Inclusive Sustainability: Harmonising Disability Law and Policy 9811907811, 9789811907814

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Ottavio Quirico   Editor

Inclusive Sustainability Harmonising Disability Law and Policy

Inclusive Sustainability

Ottavio Quirico Editor

Inclusive Sustainability Harmonising Disability Law and Policy

Editor Ottavio Quirico Law School University of New England Sydney, Australia Centre for European Studies Australian National University Canberra, Australia Law Department European University Institute Firenze, Italy

ISBN 978-981-19-0781-4    ISBN 978-981-19-0782-1 (eBook) https://doi.org/10.1007/978-981-19-0782-1 © Springer Nature Singapore Pte Ltd. 2022 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore With the support of the Erasmus+ Programme of the European Commission: 620604-EPP-1-2020-1-AUEPPJMO-PROJECT. Contents reflect the view of the Editor and Contributors only.

Disability (rectius, different ability) rights and duties have undergone a process of progressive harmonisation between the end of the twentieth century and the beginning of the twenty-first century. This process has been ‘codified’ via the United Nations Convention on the Rights of Persons with Disabilities, which is an innovative instrument in several respects. Through a critical analysis of key regulations and policies, this volume explores the architecture of global disability governance and its degree of harmonisation from an international and comparative perspective. The research shows that overcoming fragmentation requires that fundamental divides be addressed, particularly those between developed and developing countries, vulnerable groups, secularism, and different types of disability, within the context of fast progressive development fostered by the third-generation concept of ‘inclusive sustainability’.

Remember to look up at the stars Stephen Hawking

Preface

This volume commences with an apology. It addresses key questions regarding the global governance of ‘different ability’. However, for mere reasons of conformity with the current language of the United Nations Convention on the Rights of Persons with Disabilities (CRPD),1 which is the main regulatory instrument in the area, chapters rely on the substitute terminology of ‘disability’, knowing, though, that it is a definition by negation and is thus fundamentally inappropriate. May these few lines contribute to amending a fundamental misunderstanding and the international lexicon. In light of this necessary premise, what duties do the obligations to respect, protect and fulfil human rights impose on States and non-State natural and legal persons with respect to disability? How is the relationship between disability and fundamental rights structured? What is the approach of essential international and regional institutions to disability from the perspective of fundamental rights? Is disability law and policy harmonised within the imperative of sustainability? It is estimated that more than one billion people live with some form of disability, that is, about 15% of the world population, over 4 in 5 of which live in developing countries, and 93 million are children under the age of 14 with a ‘moderate or severe disability’.2 Disability has raised particular societal questions through the ages:3 disability law and policy are fundamental both internationally and domestically.4 Theoretically, disability law has experienced a shift from the medical model to a social approach, based on non-discrimination and equality in society. This imposes particular duties on the State, which is called to proactively take measures in order  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008.  World Health Organisation and World Bank, World Report on Disability (2011); UNESCO, The Right to Education for Persons with Disabilities: Overview of Reported State Measures (2015); WHO, Disability and Health, 1 December 2020, https://www.who.int/news-room/fact-sheets/ detail/disability-and-health. 3  Christina Laes (ed.), Disability in Antiquity (Routledge, 2017). 4  WHO, Disability and Health, Fact Sheet (2018) http://www.who.int/mediacentre/factsheets/ fs352/en. 1 2

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to achieve non-discrimination, often requiring differential treatment. This also imposes specific obligations on legal persons other than States, particularly non-­ governmental organisations (NGOs) and corporations, as well as natural persons. Disability thus necessarily entails a specific regulatory framework, whereby second- and third-generation fundamental rights, notably the right to sustainable development, become crucial. Internationally, the fundamental legal framework for disability was established relatively recently via the CRPD, which was adopted in 2006 and quickly entered into force in 2008: it outlines an overarching legal framework for disability. The CRPD is grounded in the assumption that persons with disabilities are active agents in society, and thus subjects of the law having full legal personality.5 The Convention combines first, second- and third-generation fundamental rights. In light of these features, it is arguable that the Convention essentially ‘harmonises’ fundamental disability rights. The CRPD has been differently implemented by State Parties,6 which currently include 164 signatories, although 18 of them, including the USA, have not yet ratified the Convention.7 Only 96 States, however, are currently parties to the Optional Protocol to the Convention on the Rights of Persons with Disabilities (CRPD Optional Protocol),8 which establishes a ‘classical’ monitoring system via the Committee on the Rights of Persons with Disabilities (CteRPD).9 The success of the CRPD in protecting disability rights depends on the extent to which State Parties enforce obligations domestically.10 For this purpose, the CRPD establishes innovative ad hoc implementation structures, notably the coordination mechanism within governments to facilitate action in different sectors and at different levels under Article 33.11 5  Gerard Quinn, ‘A Short Guide to the United Nations Convention on the Rights of Persons with Disabilities’ (2009) 1 Eur YB Disability L 89, at 90; Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 65. 6  See, for instance, Committee on the Rights of Persons with Disabilities, Concluding Observations on the Initial Report of Australia (2013), UN Doc. CRPD/C/AUS/CO/1 (2013); Id., Concluding Observations on the Initial Report of India, UN Doc. CRPD/C/IND/CO/1 (2019). 7  Convention on the Rights of Persons with Disabilities (CRPD) https://www.un.org/development/ desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. 8  Ibid. 9  Opened for signature 13 December 2006, 2518 UNTS 283, 3 May 2008. 10  OHCHR, On Enhancing Awareness and Understanding of the Convention on the Rights of Persons with Disabilities, A/HRC/10/48, 26 January 2009; Sarah Parker Harris, ‘Human Rights and Neoliberalism in Australian Welfare to Work Policy: Experiences and Perceptions of People with Disabilities and Disability Stakeholders’ (2014) 34(4) Disability Studies Quarterly (online); Arlene S. Kanter, The Development of Disability Rights under International Law: From Charity to Human Rights (Routledge, 2015) at 39. 11   OHCHR, Thematic Study on the Structure and Role of National Mechanisms for the Implementation and Monitoring of the Convention on the Rights of Persons with Disabilities, A/ HRC/13/29, 22 December 2009; Meredith Raley, ‘The Drafting of Article 33 of the Convention on the Rights of Persons with Disabilities: The Creation of a Novel Mechanism’ (2016) 20(1) International Journal of Human Rights 138.

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Given the relatively recent establishment of a supranational framework in the field, the area is still largely subject to progressive development and systematisation. The Special Rapporteurs to the United Nations Human Rights Council (HRC) on the Rights of Persons with Disabilities have underscored the necessity of supporting law reform processes, fostering capacity-building by national stakeholders and promoting the establishment of mechanisms for implementation and monitoring.12 This volume aims to contribute to the debate from the perspective of regulatory harmonisation, considering the interplay between national and international law. From a theoretical standpoint, by ‘harmonisation’ we mean the definition of a systemic framework for disability law and policy.13 From a practical perspective, by ‘harmonisation’ we refer to the adoption of uniform, or approximated, national standards in accordance with international law.14 This research ultimately addresses the question as to what extent international law, notably the CRPD, is successful in harmonising disability law and policy. The investigation aims to critically single out key substantive and procedural problems hampering harmonisation and possible ways forward, within the context of sustainability. The book ‘maps’ disability rights and duties in three sections. The first section defines a general framework for understanding disability rights and policies. In it, Ottavio Quirico explores the extent to which classical tripartite human rights apply to disability as concerns States and international organisations as sovereign entities and argues that this is a valid lens through which to understand disability rights. Timothy Fadgen contextualises the tripartite disability rights categorisation with respect to non-sovereign entities and concludes that its application varies with respect to corporations, NGOs and individuals. The second section explores the relationship between disability, key fundamental rights and regulatory regimes. Ottavio Quirico, Katarzyna Kwapisz Williams, John Morss and Xiang Gao consider the question of abortion in the case of a foetal malformation and demonstrate that achieving regulatory harmonisation is problematic, owing to persisting fundamental divides, such as the degree of laicism and development of a given State. According to Jane Kotzmann, Emily Griffith and John Morss, a certain degree of uniformity emerges in the regulation of the right to education, but critical issues remain unresolved in both developed and developing countries, notably the question of intellectual disability. An analysis of the economic implications of disability rights by Ottavio Quirico and Ciprian Radavoi reveals that firstand second-generation disability rights must be rethought as group rights within the framework of the concept of sustainable development. Concerning labour rights, Kip Werren and Guy Charlton argue that the adoption of the CRPD is not sufficient to eliminate discrimination against the disabled. Camilla Ioli analyses the right to  Catalina Devandas-Aguilar, Report of the Special Rapporteur on the Rights of Persons with Disabilities, UN Doc. A/HRC/28/58, 2 February 2015, 11; Gerard Quinn, Report of the Special Rapporteur on the Rights of Persons with Disabilities, UN Doc. A/HRC/46/27, 19 January 2021, at 4 ff. 13  Hans Kelsen, General Theory of Law and State (Russel and Russel, 1961). 14  Uwe Kischel, Comparative Law (OUP, 2019). 12

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participation as a multi-faceted construct and concludes that a new way to fulfil it is the decentralised model of ‘human rights cities’. The third section considers the law and policy approach to disability developed by the main international and regional institutional regimes. Ottavio Quirico maps mechanisms for the implementation of disability rights at the United Nations (UN) level, showing a complex web of relations from the standpoint of the UN Charter and UN treaties. Anne McNaughton demonstrates how the ‘soft’ disability policy adopted by the EU entails significant State responsibility, within the framework of a fundamental alignment between regulation under the European Union (EU) and the European Convention on Human Rights (ECHR),15 which will be reinforced by the foreseeable accession of the former to the latter.16 A multi-level analysis of disability policies across the African continent by Emmanuel Guematcha discloses inconsistencies that need to be addressed for achieving an acceptable standard of implementation of the CRPD. With respect to the Asia-Pacific, Otto Henfling and Lana Leslie show that the absence of a comprehensive human rights framework generates a set of scattered initiatives, whereby governmental action is not always adequately matched by the initiatives of civil society, with a specific focus on Indigenous people. Ottavio Quirico and Pablo Jiménez Lobeira unveil the asymmetries of the Inter-American system, where the Inter-American Commission on Human Rights (IAComHR) and the Inter-American Court of Human Rights (IACtHR) have no jurisdiction over the Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities (CIADDIS)17 and the CRPD. In sum, this volume aims to comprehensively map disability rights predominantly from a legal perspective, but including relevant political and economic insights, with a focus on the CRPD and clustered regulatory instruments. Against the background of the concept of ‘inclusive sustainability’,18 the fundamental question is whether and to what extent barriers preventing people with disabilities from fully participating in society have been overcome and what remains to be done. Ottavio Quirico

 Opened for signature 4 November 1950, 213 UNTS 221, entered into force 3 September 1953.  Council of Europe, Continuation of the Ad Hoc Terms of Reference for the CDDH to Finalise the Legal Instruments Setting Out the Modalities of Accession of the European Union to the European Convention on Human Rights, CM/Del/Dec(2020)1364/4.3, 15 January 2020. 17  OAS, AG/RES. 1608, XXIX-O/99: CIADDIS, opened for signature June 1999, entered into force 14 September 2001. 18  See OHCHR, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc A/HRC/44/30 (2020). 15 16

Contents

Part I Tripartite Disability Rights: A Theory 1 States, International Organisations, Other Sovereign Entities and the Architecture of Disability Rights: A Tripartite Approach? ��������������������������������������������������������������������������    3 Ottavio Quirico 2 Non-State Persons and Disability Rights and Duties����������������������������   27 Timothy Fadgen Part II Evolving Regulatory Areas 3 Right to Life v. Right to Health? Disability and Selective Abortion ����������������������������������������������������������������������������   51 Ottavio Quirico, Katarzyna Kwapisz Williams, John R. Morss, and Xiang Gao 4 The Right to Inclusive Education for Persons with Disabilities: A Comparative Analysis of State Progress��������������   81 Jane Kotzmann, Emily Griffith, and John R. Morss 5 Economics and Disability Rights: Inclusive Sustainability������������������  107 Ottavio Quirico and Ciprian Radavoi 6 Right to Work of Persons with Disabilities: The Public-Private Interface������������������������������������������������������������������  131 Kip Werren and Guy Charlton 7 Towards a Decentralised Model of Participation for People with Disabilities? The Case of Human Rights Cities����������������������������  153 Camilla Ioli

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Part III Universal and Regional Approaches 8 Mapping the UN Disability Rights System: A Two-Tier Pathway to Universalism ������������������������������������������������������������������������  175 Ottavio Quirico 9 European Legal Systems and Disability Rights������������������������������������  199 Anne McNaughton 10 The Need for a Comprehensive Overhaul of Disability Rights in the African Union��������������������������������������������������������������������  223 Emmanuel Guematcha 11 Disability Rights in the Asia-Pacific Region: A Fragmented Approach ������������������������������������������������������������������������  247 Otto Henfling and Lana Leslie 12 The Asymmetries of Disability Rights Protection in the Inter-American System����������������������������������������������������������������  271 Ottavio Quirico and Pablo Cristóbal Jiménez Lobeira Conclusion��������������������������������������������������������������������������������������������������������  297 Index������������������������������������������������������������������������������������������������������������������  299

About the Editor and Contributors

Editor Ottavio Quirico is an associate professor in the School of Law at the University of New England and at the Centre for European Studies of the Australian National University, and a Fernand Braudel senior fellow in the Law Department at the European University Institute. He has held positions in universities worldwide and has acted as a consultant to the United Nations.  

Contributors Guy C. Charlton is an associate professor in the Law School at the University of New England. He worked at AUT University in Auckland (New Zealand), Curtin University Law School in Perth (Australia), and City University of Hong Kong (China). He holds degrees from the Universities of Wisconsin-Madison (BA, JD), Toronto (MA), and Auckland (PhD).  

Timothy Fadgen is a senior lecturer in politics and international relations and associate director of the Public Policy Institute at the University of Auckland in New Zealand. He has extensive research experience on human rights, law, and disability.  

Xiang Gao is a lecturer in the School of Humanities, Arts and Social Sciences at the University of New England in Australia. She holds a PhD in politics and international relations from the University of Auckland. Her research interests are international relations and comparative politics.  

Emily Griffith is a research assistant in the School of Law at Deakin University in Melbourne (Australia).  

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About the Editor and Contributors

Emmanuel Guematcha is a senior lecturer at the University of French Guiana and a lecturer at the University of Paris-Nanterre in France. He has researched extensively in the areas of international law, transitional justice, and human rights.  

Otto Henfling is an experienced senior executive in the Not-For-Profit (NFP) sector and the CEO of Growing Potential Ltd in Australia. He has been in the Australian Government Public Service, including social security portfolios. He is a graduate and MBA from Western Sydney University as well as a fellow of the Governance Institute of Australia and of the Institute of Managers and Leaders.  

Camilla  Ioli is an alumnus of the Universities of Bologna and Oxford. She researched on human rights at the Australian National University Centre for European Studies in Canberra and is currently working on asylum policies in Italy on behalf of the European Union Agency for Asylum. She is the EU Focal Point of the MCGY Migration Working Group.  

Jane  Kotzmann is Alfred Deakin Postdoctoral Research Fellow at Deakin Law School in Melbourne. She has degrees in commerce and law and a PhD in human rights law from Deakin University, and a postgraduate diploma in teaching from the University of Melbourne. She has researched extensively in the areas of education and human rights.  

Lana  Leslie is a proud Kamilaroi woman with ancestral ties to Moree and Coonabarabran in North West NSW, Australia. Lana’s qualifications include a PhD in human geography/Aboriginal health and well-being, Master of Social Science, and Bachelor of Social Science. Lana is the vice-chair First Nations of the Leadership Development Community in the International Leadership Association. She is the founder and managing director of Gunnedah Hill Pty Ltd, an Aboriginal management consultancy in Sydney, Australia.  

Pablo Cristóbal Jiménez Lobeira is a research associate at the Australian National University Centre for European Studies. His research explores political philosophy topics in – or relating to – Europe.  

Anne McNaughton is the director of the ANU Centre for European Studies at the Australian National University and a senior lecturer at the ANU Law School. She researches at the intersection of international and comparative law with a focus on the European Union as a unique legal order of international law.  

John R. Morss is a senior lecturer at Deakin Law School in Melbourne. He trained in psychology at Sheffield and Edinburgh Universities in the UK and in Law at the University of Otago in New Zealand. He has published extensively in the areas of international law and human rights.  

About the Editor and Contributors

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Ciprian Radavoi is a lecturer in law at Charles Darwin University in Australia. He holds a PhD from the University of International Business and Economics (Beijing, China) and has extensive practice and research experience in the areas of international law and social justice.  

Kip Werren is a lecturer in the School of Law at the University of New England. He has experience in professional legal practice and accounting. He has practiced, taught, and published particularly in the area of commercial law, including labor law.  

Katarzyna Kwapisz Williams is deputy director and Jean Monnet research fellow at the Centre for European Studies of the Australian National University (ANU). Before joining ANU, she was assistant professor at the Faculty of International Studies and Politics at the University of Lodz (Poland). She is a cultural scholar interested in cultural history, memory, migration and Central-Eastern European identity making.  

Special thanks go to Joshua Woodyatt, research associate at the ANU Centre for European Studies, for research assistance and suggestions.

Abbreviations

ABC ACHPR ACHR AComHPR ACRWC ACteERWC ACtHPR ADF ADRDM APEC ASEAN AU AUD BMAS CDDH CEDAW

Accessible Books Consortium African Charter on Human and Peoples’ Rights American Convention on Human Rights African Commission on Human and Peoples’ Rights African Charter on the Rights and Welfare of the Child African Committee of Experts on the Rights and Welfare of the Child African Court on Human and Peoples’ Rights ASEAN Disability Forum American Declaration on the Rights and Duties of Man Asia-Pacific Economic Cooperation Association of Southeast Asian Nations African Union Australian Dollar Federal Ministry for Labour and Social Affairs Steering Committee for Human Rights Convention on the Elimination of All Forms of Discrimination against Women CEDDIS Committee for the Elimination of All Forms of Discrimination against People with Disabilities ch Chapter CIADDIS Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities CIPA Convention on International Protection of Adults CJEU Court of Justice of the European Union CRC Convention on the Rights of the Child CRPD Convention on the Rights of Persons with Disabilities CSFT Civil Society Forum of Tonga CSR Corporate Social Responsibility ComSocD Commission for Social Development CteESCR Committee on Economic, Social and Cultural Rights

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CteJDCPD

Abbreviations

Committee for the Jubilee Day of the Community with Persons with Disabilities CteRPD Committee on the Rights of Persons with Disabilities Cth Commonwealth CUFO-SM Operators Mental Health Family Users Committee DASR Draft Articles on State Responsibility DESA Department of Economic and Social Affairs doc. Document DPKO Department for Peacekeeping Operations DPO Disability Persons Organisation DSM-DP Department of Mental Health and Pathological Addictions ECA Economic and Social Commission for Africa ECE Economic and Social Commission for Europe ECHR European Convention on Human Rights ECJ European Court of Justice ECLAC Economic and Social Commission Commissions for Latin-America and the Caribbean EComHR European Commission on Human Rights ECOSOC Economic and Social Council ECteSR European Committee of Social Rights ECtHR European Court of Human Rights EDF European Disability Forum EECT Treaty Establishing the European Economic Community ESC European Social Charter ESCAP Economic and Social Commission for Asia and the Pacific ESCWA Economic and Social Commission for Western Asia EU European Union EUCFR Charter of Fundamental Rights of the EU FRA Fundamental Rights Agency GA General Assembly GATE Global Cooperation on Assistive Technology GDP Gross Domestic Product GIHR German Institute for Human Rights HCHR Office of the High Commissioner for Human Rights HRC Human Rights Council HRCom Human Rights Commission HRCte Human Rights Committee IAComHR Inter-American Commission on Human Rights IACtHR Inter-American Court of Human Rights IANWGE Network on Women and Gender Equality IASG Inter-Agency Support Group for the CRPD ICC International Criminal Court ICCPR International Covenant on Civil and Political Rights ICESCR International Covenant on Economic, Social and Cultural Rights ICT Information and Communication Technology

Abbreviations

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IDA International Disability Alliance ILC International Law Commission ILO International Labour Organization IMF International Monetary Fund IVF In Vitro Fertilisation No/n. Number NAP National Action Plan NDIA National Disability Insurance Agency NDIS National Disability Insurance Scheme NGO Non-Governmental Organisation NZ New Zealand OAS Organization of American States OAU Organisation of African Unity OECD Organisation for Economic Cooperation and Development OMC Open Method of Coordination PACHPRPD Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities PDF Pacific Disability Forum PRISM Promote and Actively Achieve Mental Health Together res. Resolution s. Section sess. Session SDGs Sustainable Development Goals SRRPD Special Rapporteur on the Rights of Persons with Disabilities SSP San Salvador Protocol on Economic, Social and Cultural Rights to the Inter-American Convention on Human Rights suppl. Supplement TAP Training in Priority Assistive Products TEC Treaty Establishing the European Community TEU Treaty on European Union TFEU Treaty on the Functioning of the European Union tr. Translation UDHR Universal Declaration of Human Rights UN United Nations UNCLOS United Nations Convention on the Law of the Sea UNCTAD United Nations Commission on Trade and Development UNDP United Nations Development Programme UNDRPD United Nations Declaration on the Rights of Persons with Disabilities UNESCO United Nations Educational, Scientific and Cultural Organization UNFCCC United Nations Framework Convention on Climate Change UNICEF United Nations Children’s Emergency Fund UNPRPD United Nations Partnership on the Rights of Persons with Disabilities UPR Universal Periodic Review US United States VCDR Vienna Convention on Diplomatic Relations

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VCLT VCLTIO VREDPC WBU WHO WIPO WNUSP YBILC

Abbreviations

Vienna Convention on the Law of Treaties Vienna Convention on the Law of Treaties between States and International Organizations or between International Organizations Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) World Blind Union World Health Organization World Intellectual Property Organization World Network of Users and Survivors of Psychiatry Yearbook of the International Law Commission

Part I

Tripartite Disability Rights: A Theory

Chapter 1

States, International Organisations, Other Sovereign Entities and the Architecture of Disability Rights: A Tripartite Approach? Ottavio Quirico

And they conducted me forthwith to the City of the Sun Tommaso Campanella, The City of Sun

Contents 1.1  I ntroduction 1.2  S  tates, International Organisations, Sovereign Entities and the Establishment of Disability Rights and Duties 1.3  State Responsibility 1.3.1  Respecting Disability Rights 1.3.2  Protecting Disability Rights 1.3.3  Fulfilling Disability Rights 1.4  Responsibility of International Organisations 1.5  Responsibility of Other Sovereign Entities 1.6  Conclusion References

   4    6  11  11  13  14  17  20  22  23

Abstract  Considering disability (or rectius, different ability) from a human rights perspective entails a review of, and thereby the progressive development of, fundamental rights. According to some scholars, disability entails a revision of the ­classical tripartite human rights architecture, based on the duties to respect, protect and fulfil first-, second- and third-generation human rights, so as to include socalled fourth- and fifth-generation fundamental rights. Particularly in light of the

O. Quirico (*) Law School, University of New England, Sydney, Australia Centre for European Studies, Australian National University, Canberra, Australia Law Department, European University Institute, Firenze, Italy e-mail: [email protected]; [email protected]; [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_1

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Convention on the Rights of Persons with Disabilities, how do fundamental rights categories apply in the area of disabilities with respect to States, international organisation and other sovereign persons? Arguably, whereas the regulation of disability entails a progressive development and pluralisation of fundamental rights, the tripartite approach to human rights still provides a valid interpretive lens to understand disability rights. Keywords  Tripartite human rights · Convention on the Rights of Persons with Disabilities · Disability (different ability) rights · Duty to respect, protect and fulfil disability rights · First-, second- and third-generation disability rights · States · International organisations · Sovereign persons

1.1  Introduction According to a ‘tripartite’ categorisation, fundamental rights include the obligations to respect, protect and fulfil fundamental duties. These are further divided into first-, second- and third-generation human rights, respectively including civil and political rights; economic, social and cultural rights; and the collective rights to environment and development. These duties apply first and foremost to States, which are the primary subjects of international law and which implement such duties domestically. States are indeed endowed with international rights and, particularly, duties, and thus also with human rights obligations. Given that human rights are primarily individual entitlements, and in light of the necessary correlation between duties and rights,1 States mostly have obligations with respect to such rights vis-à-vis individuals; therefore, this chapter essentially analyses State disability duties. The seeds of the tripartite approach to fundamental rights were planted in the 1980s, when Asbjørn Eide, Rapporteur to the United Nations (‘UN’) Sub-­ Commission on Prevention of Discrimination and Protection of Minorities, proposed a major conceptual innovation, including the duties to respect, protect, ensure and promote human rights.2 Along these lines, the political philosopher Henry Shue put forward a distinction between the duty to avoid human rights deprivation, the obligation to protect people from deprivation of human rights by others, and the duty to help persons deprived of fundamental rights.3 This view led to the definitive

1  Wesley Newcomb Hohfeld, ‘Some Fundamental Legal Conceptions as Applied in Judicial Reasoning’ (1913) 23(1) Yale Law Journal 16, at 30 and 33; Id., ‘Fundamental Legal Conceptions as Applied in Judicial Reasoning’ (1916) 26(8) Yale Law Journal 710. 2  Asbjørn Eide, The Right to Adequate Food as a Human Right, Report, UN Doc. E/CN.4/ Sub.2/1983/25 (1983). 3  Henry Shue, Basic Rights, Subsistence, Affluence, and Foreign Policy (Princeton UP, 1980) at 52.

1  States, International Organisations, Other Sovereign Entities and the Architecture…

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establishment of the tripartite approach, including the obligations to respect, protect and fulfil human rights.4 The obligation to ‘respect’ human rights is negative and compels States not to breach fundamental rights, that is, not to interfere with their full enjoyment. The obligation to ‘protect’ human rights is positive and compels States to take action against violations possibly committed by others: it obliges States to assume a pre-­ emptive and proactive approach. The obligation to ‘fulfil’ human rights is also positive and compels States to facilitate the enjoyment of human rights; therefore, States must create opportunities to allow people to enjoy human rights by adopting appropriate measures for their realisation.5 Whilst the tripartite distinction evolved together with the development from civil and political rights to economic, social and cultural rights, States have an obligation to respect, protect and fulfil all human rights.6 Within the context of disability (or rectius, different hability), the tripartite human rights architecture undergoes adaptation. Disabled persons constitute a specific group of people in society, together with other groups, such as refugees, women, children, workers and minorities. In addition, the group of persons with disabilities is ‘cross-sectoral’, to the extent that persons with disabilities include women, children, workers, refugees and minorities. This triggers a progressive evolution of human rights: studying disability in society from a law and policy perspective compels the charting of largely uncharted waters. This contribution outlines the scope of the notion of ‘disability’ and explores the disability duties owed by States and other sovereign entities, particularly international organisations, through the lens of tripartite human rights obligations, against the background of the principles of equality and non-discrimination. In light of the interdependence and indivisibility of all fundamental rights, the chapter considers how the tripartite prism applies within the context of disability rights with respect to States and other sovereign entities. First, the contribution provides a brief overview of the way in which States and other sovereign entities, particularly international organisations, have contributed to the establishment of disability rights. Second, the chapter explores the disability obligations of States and other sovereign entities, seeking to understand to what extent the tripartite paradigm applies and to what extent it needs to be reconceptualised.

4  Asbjørn Eide, The Right to Adequate Food as a Human Right, Report, UN Doc. E/CN.4/ Sub.2/1987/23 (1987). 5  Office of the High Commissioner for Human Rights, Principles and Guidelines for a Human Rights Approach to Poverty Reduction Strategies (2005) at para. 48: ‘The duty to respect requires the duty-bearer to refrain from interfering with the enjoyment of any human right. The duty to protect requires the duty-bearer to take measures to prevent violations of any human right by third parties. The duty to fulfil requires the duty-bearer to adopt appropriate legislative, administrative and other measures towards the full realization of human rights’. 6  Ibid., at para. 48: ‘All human rights – economic, civil, social, political and cultural – impose negative as well as positive obligations on States, as is captured in the distinction between the duties to respect, protect and fulfil’.

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1.2  S  tates, International Organisations, Sovereign Entities and the Establishment of Disability Rights and Duties States and international organisations have played a crucial role in the establishment of disability rights and duties under international law.7 Whilst general human rights treaties, such as the 1966 International Covenant on Civil and Political Rights (‘ICCPR’)8 and International Covenant on Economic, Social and Cultural Rights (‘ICESCR’) do not specifically address persons with disabilities,9 they do provide indirect protection. For instance, Article 3 of both the ICCPR and ICESCR acknowledges the principle of non-discrimination between men and women; Article 2 of the ICCPR and ICESR engages States to grant Covenant rights to all persons within their jurisdiction without distinction based on, for instance, religion, or ‘other status’, which is a broad concept also encompassing disability;10 ICCPR Article 26 outlines the different components of the right to non-­ discrimination; and the right to social security under ICESCR Article 9 applies to the disabled. In 1989, the Convention on the Rights of the Child (‘CRC’)11 was the first treaty to prohibit discrimination on the basis of disability and to acknowledge the right of children with disabilities to enjoy a full life as well as to have access to special care and assistance for this purpose. In 1955, the International Labour Organisation (‘ILO’) adopted the Vocational Rehabilitation (Disabled) Recommendation,12 and subsequently, in 1983, the Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159).13 These instruments aimed at promoting employment opportunities for disabled persons in the open labour market, based on the principle of equal opportunity between disabled workers and workers generally, which anticipates the social model embedded in the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’).14 The UN has been the main driving force on disability rights internationally, notably via the General Assembly. In 1971, the Assembly adopted the Declaration on the Rights of Mentally Retarded Persons15 and in 1975 the Declaration on the Rights of

7  For a summary of regulatory initiatives in the area of disability, see ILO, Decent Work for Persons with Disabilities: Promoting Rights in the Global Development Agenda (2015) at 15–62. 8  Opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976. 9  Opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. 10  Gerard Quinn and Theresia Degener, Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability (UN, 2002) at 54. 11  Opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. 12  ILO Doc. R099, adopted on 22 June 1955. 13  Opened for signature 20 June 1983, 1401 UNTS 235, entered into force 20 June 1985. 14  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. See Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 35. 15  UN GA Res. 2856 (XXVI) of 20 December 1971.

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Disabled Persons.16 The UN increasingly addressed persons with disabilities in the 1980s via the Proclamation of the 1982 World Programme of Action concerning Disabled Persons17 and the Proclamation of the 1983–1992 UN Decade of Disabled Persons.18 In 1987, participants in the first revision of the Programme recommended the drafting of a convention on the fundamental rights of disabled persons.19 In 1991, the General Assembly adopted the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care,20 addressing intrusive and irreversible treatment for mental disability, such as sterilisation and psycho-­ surgery. In 1993, the Assembly passed the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (‘Standard Rules’), aiming to promote equality and participation in society for persons with disabilities, including proactive State obligations.21 This pattern paved the way to the adoption of the CRPD and its Optional Protocol establishing the Committee on the Rights of Persons with Disabilities22 (‘the CteRPD’) as a monitoring mechanism in 2006. On 19 December 2001, the General Assembly adopted a Resolution establishing an ad hoc Committee with a view to the drafting of a Convention promoting and protecting the rights and dignity of persons with disabilities,23 based on the holistic approach taken in the fields of social development, human rights and non-­ discrimination, and considering the recommendations of the Commission on Human Rights and the Commission for Social Development.24 The mandate envisaged the application of existing human rights to the particular condition of disabled persons, excluding the development of new fundamental rights.25 However, by its very nature the CRPD entails progressive development of the area and compels a re-­ conceptualisation of fundamental rights.

 UN GA Res. 3447 (XXX) of 9 December 1975. For an early chronology of disability law at the UN, see UN Department of Economic and Social Affairs, The United Nations and Persons with Disabilities Chronology: 1945–1980, https://www.un.org/development/desa/disabilities/the-­ united-­nations-and-persons-with-disabilities-chronology-1945-1980.html. 17  UN GA Res. 37/52 of 3 December 1982. 18  UN GA Res. 37/53 of 3 December 1982. 19  UNenable, Human Rights and Persons with Disabilities, https://www.un.org/esa/socdev/enable/ rights/humanrights.htm. 20  UN GA Res. 46/119 of 17 December 1991. 21  UN GA Res. 48/96 of 20 December 1993, Annex. 22  Opened for signature 13 December 20016, 2518 UNTS 283, 3 May 2008. 23  UN GA Res. 56/168 of 19 December 2001 on a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities. 24  Ibid, at para. 1. 25  Phillip French, Human Rights Indicators for People with Disability: A Resource for Disability Activists and Policy Makers (2008) at 12. 16

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The CRPD is lex specialis, and also lex posterior with respect to general human rights treaties such as the ICCPR and ICESCR:26 it complements these general conventions, spells them out in detail and overrides them when there is inconsistency. Furthermore, it is possible to rely on the CRPD to interpret regional human rights treaties such as the European Convention on Human Rights (‘ECHR’), according to the principle of systemic integration established in Article 31(2) of the Vienna Convention on the Law of Treaties (‘VLCT’).27 The CRPD has had an important impact, providing a blueprint for action in the area of disability. Since its adoption, the General Assembly has delivered a set of Resolutions addressing different aspects of the implementation of the Convention.28 The World Health Organisation (‘WHO’) launched the World Report on Disability in 2011 as a resource for policymakers, service providers, professionals and advocates for disabled persons and their families.29 At the regional level, the Organisation of American States (‘OAS’) adopted its Inter-American Convention on the Elimination of all Forms of Discrimination against Persons with Disabilities (‘CIADDIS’), as early as 1999.30 This, however, is only a short text that embeds general provisions committing signatory governments to the elimination of discrimination vis-à-vis the disabled, in collaboration with the private sector. Within the European Union (‘EU’), twenty years ago only Sweden and Germany included persons with disabilities in constitutional regulation and no European State had passed legislation outlining measures to combat discrimination based on disability. Currently, more than thirty European States have established wide-ranging disability measures and the EU has signed and ratified the CRPD.31 In 2018, the Assembly of Heads of State and Government of the African Union (‘AU’) adopted the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa,32 along the lines of the CRPD. The UN Economic and Social Commission for Asia and the Pacific (‘ESCAP’) has adopted initiatives such as the Ministerial Declaration on the Asian and Pacific Decade of Persons with Disabilities (2013–2022) and the Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific.33

 ILC, ‘Report on Fragmentation of International Law: Difficulties Arising from the Diversification and Expansion of International Law’, UN Doc. A/CN.4.L.682 (2006) II(2) YBILC 1, at 24, para. 36. 27  Opened for signature 23 May 1969, 1155 UNTS 331, entered into force 27 January 1980. See RP and Others v. the United Kingdom, Case 38245/08, ECtHR, Judgment of 9 October 2012. 28  UN Department of Economic and Social Affairs, General Assembly Reports and Resolutions: Disability, https://www.un.org/development/desa/disabilities/resources/general-assembly.html. 29  WHO, World Report on Disability (2011). 30  Opened for signature 8 June 1999, AG/RES 1608(XXIX-O/99), in force 14 September 2001. 31  UNTC, Convention on the Rights of Persons with Disabilities, https://treaties.un.org/pages/ ViewDetails.aspx?src=TREATY&mtdsg_no=IV-15&chapter=4. 32  Adopted 19 January 2018. 33  ESCAP Res. 69/13 of 1 May 2013. 26

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The CRPD can be considered a ‘codification’ treaty, playing a role similar to that of the Vienna Convention on Diplomatic Relations (‘VCDR’)34 or the UN Convention on the Law of the Sea (‘UNCLOS’)35 in their respective areas of operation. It is a basic reference for all those who work in the field and a milestone in the development of any considerations on disability regulation, aiming to ‘harmonise’ disability law throughout the world. Via rules such as Articles 25 and 27, the CRPD contextualises with respect to persons with disabilities human rights embedded in norms such as ICCPR Article 12, on the right to health, and ICESCR Article 6, on the right to work. Unlike other international conventions, for instance, UNCLOS, which refers to ‘the Parties’, the CRPD refers to ‘States Parties’: States are therefore the primary addressees of disability duties. The CRPD does not define the concept of ‘disability’; however, Article 1 clarifies that disability must not be understood according to a medical paradigm, but rather according to a social model, considering the interaction of impaired persons with society and barriers that prevent their full and effective societal participation on an equal footing with others. Such a model triggers a non-discriminatory paradigm, which is posited in CRPD Article 3(b), embedding ‘general principles’, and is summarised in Article 5, regulating ‘equality and non-discrimination’. In line with established international treaties, such as the ICESCR (Article 2), according to CRPD Article 5(1), all persons are equal before and under the law and enjoy its equal protection and benefit without discrimination. As a consequence, Article 5(2) requires that the Parties to the CRPD prohibit any discrimination based on disability and afford equal and effective legal protection against discrimination to persons with disabilities. This view entails a proactive approach under Article 5(3), under which the State Parties are to take appropriate steps to ensure reasonable accommodation for disability. Scholars thus consider that not affording reasonable accommodation is a form of discrimination against the disabled.36 In line with these fundamental tenets, CRPD Article 1 establishes the essential aim of ‘promot[ing], protect[ing] and ensur[ing]’ human rights. These are positive commitments; in fact, disability is a differential situation which requires a proactive approach by the State, notably positive measures to exclude the difference and ensure non-discrimination as explicitly stated in CRPD Article 5(4). There is therefore a specific focus on the active role of the State and its positive obligations with respect to the fundamental rights of persons with disabilities. In this context, some provisions address non-discrimination with respect to women and children: these subjects enjoy specific protection within the context of the Convention. CRPD Article 6 (Women with disabilities) establishes that the Parties acknowledge the situation of women and girls with disabilities as subject to multiple forms of discrimination and commit to adopting appropriate measures to ensure their full development, advancement and empowerment to enjoy disability

 Opened for signature 24 April 1963, 596 UNTS 261, entered into force 19 March 1967.  Opened for signature 10 December 1982, 1833 UNTS 3, entered into force 16 November 1994. 36  Kjersti Skarstad, ‘Human Rights through the Lens of Disability’ (2018) 36(1) NQHR 24, at 31. 34 35

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rights. According to CRPD Article 7, States Parties must also take necessary measures to ensure that children with disabilities fully enjoy fundamental rights and freedoms like any other child, taking into account their best interest and the right to freely express their views. Against this backdrop, a set of principles emerge, including respect for inherent dignity, individual autonomy and independence; full participation and inclusion in society; respect for difference; equality of opportunites; accessibility; equality of gender; and respect for the evolving capacities of children with disabilities (CRPD Article 3). These are underpinned by the tenet of non-discrimination, which is inherent in the very essence of the regulation of disability rights, as particularly evidenced in CRPD Article 12(1)-(2), which acknowledges that persons with disabilities have a right to recognition as persons before the law and enjoy legal capacity on a basis of equality. This norm reverses the paradigm adopted in several legal systems, which rely on guardianship and substitute decision-making.37 Schematically, CRPD Articles 10–23 and 29 embed first-generation (civil and political) rights, such as the rights to life and freedom of movement. Articles 24–28 and 30 include second-generation, or welfare (economic, social and cultural) rights, such as the rights to education and health. Subsection (g) of the Preamble and Article 32(1)(a) incorporate third-generation (sustainable development) rights. Whereas civil and political disability rights are more basic and impose on States an immediate obligation to promote, protect and fulfil them, economic, social, cultural and development disability rights entail for States an obligation of progressive realisation, according to minimum essential standards, in light of maximum available resources.38 However, unlike the traditional distinction, whereby first-generation human rights mostly require non-interference by the State and second-generation rights require a proactive State approach, all of these rights entail positive State action in the area of disability, because of the differential situation of the disabled, in order to avoid discrimination. Furthermore, the process of codifying disability law has led to a transformation and adaptation of classical human rights categories. Thus, collective or social group rights extend the category of third-generation human rights: besides the right to development (CRPD Article 32), group rights encompass new claims, such as the right to research and development (CRPD Article 4(f)-(g)), awareness-raising (Article 8), social protection and poverty reduction (Article 28(b)). It is also considered that ‘universal’ equality measures, such as the right to accessibility (CRPD Article 9), institute fourth-generation human rights.39 In addition, recreation- and  Arlene S. Kanter, The Development of Disability Rights under International Law (Routledge, 2015) at 236; Anna Nilsson and Lucy Series, ‘Article 12: Equal Recognition before the Law’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 339. 38  CteESCR, The Nature of States Parties’ Obligations (Art.2(1) of the Covenant), General Comment No. 3, 14 December 1990, contained in UN HCHR Doc. E/1991/23, particularly at para. 9. 39  French, Human Rights (2008) at 12. 37

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leisure-related obligations (CRPD Article 30) would institute fifth-generation human rights.40 Nonetheless, these categories seem to be more an adaptation of existing fundamental rights to the specific group of persons with disabilities.41 For instance, accessibility can be seen as a second-generation human right requiring the State to act for the welfare of persons with disabilities. In any case, the proposed multiplication of fundamental human rights categories through which it is possible to understand disability shows the potential for a new conceptualisation arising from a systemic application of fundamental rights to disability.

1.3  State Responsibility States are the primary addressees of disability duties.42 Notably, the CRPD is concerned first and foremost with States: almost all the provisions of the Convention, for instance, Articles 5, 6 and 7, address ‘State Parties’. Commentators consider that ‘the State has a role to play, not just in declaring the equal rights of people with disabilities, but also in engaging in the struggle to isolate systemic inequality and finding the means to overcome it.’43 It is also acknowledged that the CRPD ‘details all human rights of persons with disabilities and clarifies the obligations of States to respect, protect and fulfil these rights’.44

1.3.1  Respecting Disability Rights The obligation to respect human rights is in principle negative and compels States not to take action in breach of fundamental rights. Attribution of unlawful conduct essentially takes place under Article 4 of the 2001 Draft Articles on State Responsibility (‘DASR’), whereby conduct of a State agent is an act of the State.45

 Ibid.  See Michelle A Travis, ‘Impairment as Protected Status: A New Universality for Disability Rights’ (2011/12) 46(4) Georgia L. Rev. 937, at 945. 42  OHCHR, Training Package on the Convention on the Rights of Persons with Disabilities: What Is Disability? (2012) at 17, https://www.ohchr.org/EN/Issues/Disability/Pages/Training materialCRPDConvention_OptionalProtocol.aspx. 43  Lee Ann Basser and Melinda Jones, ‘The DDA and the Tripartite Approach to Operationalising Human Rights’ (2002) 26(2) Melbourne University Law Review 254, at 283. 44   OHCHR, Thematic Study on the Structure and Role of National Mechanisms for the Implementation and Monitoring of the Convention on the Rights of Persons with Disabilities, UN Doc. A/HRC/13/29, 22 December 2009, at 3, para. 6. 45  ILC, ‘Report of the International Law Commission on the Work of Its Fifty-Third Session, UN Doc. A/56/10 (2001) II(2) YBILC 1, at 26. 40 41

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State responsibility is also triggered by conduct of private persons acting under State direction or control under DASR 8.46 Although the focus of the CRPD is on the obligation to ‘promote, protect and ensure’ disability rights, subsection (1)(d) of CRPD Article 4 (General obligations) establishes a duty ‘to refrain from engaging in any act or practice’ inconsistent with the Convention and ‘to ensure that public authorities and institutions act in conformity with’ it. Thus, the UN Office of the High Commissioner for Human Rights (‘OHCHR’) considers that, under the CRPD, States have an obligation to ‘respect’ disability rights, in addition to an obligation to ‘protect and fulfil’ them.47 In fact, there is a breach of the principle of non-interference when State institutions resort to practices such as electroshock therapy or cage beds for disabled persons, or impose intrusive medical treatments to correct disability against a person’s will.48 Under the Americans with Disabilities Act,49 the State commits a violation of disability rights if it denies an employment opportunity to a qualified applicant with a disability, where such denial is based on the need to reasonably accommodate the applicant’s physical or mental impairment. In Vincent v. France, the European Court of Human Rights (‘ECtHR’) held France in breach of the prohibition of inhumane or degrading treatment, provided under ECHR Article 3, for detaining a disabled person in a prison in which he could not freely move about or independently leave his cell.50 Interestingly, adapting fundamental rights to disability under the CRPD seems often to entail a ‘transformation’ of negative duties of non-interference into positive State obligations.51 Therefore, in spite of Article 4(2) of the CRPD, it is considered that the CRPD blends first- and second-generation human rights not only within its general structure, but also within specific norms.52 For instance, freedom of opinion and expression, which imposes on the State a duty of non-interference, entails under Article 21(b) of the CRPD a positive State duty to provide information in accessible format and to acknowledge sign languages, Braille and other forms of communication between disabled persons in official correspondence. This raises the question as to what extent rights such as the freedom of opinion and expression are subject to immediate rather than progressive realisation.53 The question can be answered by considering that the CRPD requires an ‘integration’ of negative human rights with positive ones, rather than a ‘transformation’, whereby

 Ibid.  UNHCHR, Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors (2010) at 13; Andrea Broderick, ‘Article 4: General Obligations’, in Bantekas, Stein and Anastasiou, The UN Convention (2018) 106, at 116. 48  Ibid., at 26. 49  1990 42 USC § 12101. 50  Vincent v. France, ECtHR, Case 6253/03, Judgment of 24 October 2006, at para. 103. 51  French, Human Rights (2008) at 12. 52  Ibid. 53  Ibid. 46 47

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negative obligations call for immediate realisation and positive duties necessitate progressive realisation.

1.3.2  Protecting Disability Rights The mechanisms governing responsibility under the duty to protect human rights establish that States have an obligation to intervene and prevent third persons from threatening human rights.54 Therefore, the State is compelled to adopt measures pre-­ empting violations of human rights by third parties. The basic principle for attribution of responsibility is ‘reasonableness’. This provides that a State shall be responsible, whenever it is reasonable to expect the adoption of a measure for preventing the violation of disability rights.55 Therefore, a State must adopt all reasonable measures that might prevent the violation of disability rights, which must be assessed on a case-by-case basis. For instance, with respect to the prohibition of torture, States must take positive measures to ensure that private institutions do not impose medical practices such as electroshock therapy against disabled persons. It is also considered that respect for dignity is infringed if an employer forces blind workers to wear a shirt with the printed word ‘blind’;56 in this respect, the State must adopt adequate legislation to prevent such conduct. If the adopted measures fail, the State is under a duty to provide effective remedies, where necessary, via compensation or other sanctions. More precisely, States must ‘prevent, punish, investigate or redress the harm caused’ by private persons or entities.57 In the first place, effective domestic remedies should afford a real opportunity for review and reparation: in Airey v. Ireland, the ECtHR held that the State duty to grant effective access to courts includes a right to free legal assistance in civil matters.58 In some States, such as Sweden and Australia, a high-ranking official known as an ‘ombudsman’ assesses informally and reports to the government on claims concerning human rights violations, acting more expeditiously than courts. If domestic remedies fail, individuals should have recourse to international procedures, including action in human rights bodies such as the UN Human Rights Committee (‘HRCte’) and the UN Committee on Economic, Social and Cultural Rights (‘CtESCR’). In Ximenes Lopes v. Brazil, the Inter-American Court of Human Rights (‘IACtHR’) considered the case of a mentally ill person who died of injuries  Human Rights Committee, Nature of the General Legal Obligation Imposed on States Parties to the Covenant, General Comment No. 31, CCPR/C/21Rev.1/Add.13 (2004) at para 8: ‘individuals are protected by the State … against acts committed by private persons or entities that would impair the enjoyment of Covenant rights in so far as they are amenable to application between private persons or entities’. 55  Olivier De Schutter, International Human Rights Law (CUP, 2014) at 462 and 478. 56  UNHCHR, Monitoring the Convention (2010) at 18. 57  Ibid. 58  Airey v. Ireland, ECtHR, Appl. 6289/73, Judgment of 9 September 1979, at para. 33. 54

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at Casa de Reposo Guararapes, a private institution operating under State license.59 In the absence of effective proceedings within six years of the death of the victim, the IACtHR considered that the victim’s relatives were ‘entitled -and the States … obliged- to have an effective investigation of the events carried out by State authorities, to prosecute the alleged perpetrators of the wrongful acts and, if applicable, to impose the appropriate punishment’.60 Given the complexity of disability, ranging from visual impairment to psychological problems, the State should establish and promote communication networks with a broad range of partners, such as intergovernmental organisations, universities, research institutions, non-governmental organisations (‘NGOs’), trade unions and professional groups, for the purpose of monitoring respect for human rights.61

1.3.3  Fulfilling Disability Rights The obligation to fulfil human rights requires States to take appropriate measures to fully realise fundamental rights, compelling the adoption of targeted policies. This duty is further disaggregated into the obligations to (1) facilitate, (2) promote and (3) provide human rights. These duties are particularly important in the context of disability rights, because disabled persons are in a specific situation that requires the adoption of positive State measures to ensure equality and exclude discrimination. In this respect, scholars speak of ‘reasonable accommodation’ and ‘appropriate affirmative action programmes’.62 The obligation to facilitate the enjoyment of disability rights compels the taking of positive measures to assist individuals and groups in enjoying human rights. This is exemplified by CRPD Article 9 (Accessibility), which establishes that, in order to enable persons with disabilities to live independently and participate fully in all aspects of life, States must take appropriate measures to grant access, on an equal basis with others, to the physical environment. This includes, for instance, transportation, information and communications in both urban and rural areas. The CteRPD pointed out that this is ‘a disability-specific reaffirmation of the social aspect of the right of access’ under the ICCPR,63 including ‘an obligation to adopt, promulgate and monitor national accessibility standards.64 A State must thus identify and eliminate obstacles and barriers hampering access to, inter alia, roads, buildings, housing, medical facilities and workplaces (CRPD Article 9(1)(a)). Furthermore, States  Ximenes-Lopes v. Brazil, IACtHR, Judgment of July 4 2006.  Ibid., at para. 246. 61  UNHCHR, Monitoring the Convention (2010) at 35. 62  Mac Darrow, ‘International Human Rights and Disability: Time for an International Convention on the Human Rights of Peoples with Disabilities?’ (1996) Austr. JHR 69, at 79. 63  CtRPD, Article 9 – Accessibility, General Comment No. 2, UN Doc. CRPD/C/GC/2, 22 May 2014, at 2, para. 4. 64  Ibid., at 8, para. 28. 59 60

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must develop, promulgate and monitor minimum standards for the accessibility of facilities and services open to the public (CRPD Article 9(2)(a)). Concerning third parties, States must also ensure that private entities offering facilities and services to the public consider accessibility for disabled persons (CRPD Article 9(2)(b)). Along the lines of the discourse on ‘digital inclusion’,65 States must promote access to new information and communication technologies and systems, such as the Internet, for the disabled (CRPD Article 9(2)(g)). These rules apply to the disabled the principles embedded in Article 18(e) of the UN Declaration on Social Progress and Development, which encourages the development and expansion of transportation systems, notably in developing countries.66 Similarly, para 11(h) of the ILO Recommendation Concerning Vocational Rehabilitation and Employment establishes that disabled persons should be afforded adequate means of transport to and from their places of rehabilitation and work. Following the same rationale, in the area of health, Japan’s Fundamental Law for Countermeasures for Mentally and Physically Handicapped Persons establishes that both the State and local public bodies must take measures to provide disabled persons with those medical benefits necessary to restore or provide vital functions (Article 10).67 In Furlan and Family v. Argentina, the IACtHR held the State in breach of the obligation to comply with its obligation to guarantee, without discrimination, the right of access to justice under Articles 1(1), 5(1), 8(1), 19, 21, 25(1) and 25 (2)(c) of the American Convention on Human Rights.68 The obligation to promote human rights requires States to ensure appropriate education about fundamental rights. CRPD Article 8 regulates awareness-raising and establishes that States must undertake to implement immediate, effective and appropriate measures to raise societal awareness concerning disabled persons and to support respect for disability rights and the dignity of disabled persons (CRPD Article 8(1)(a)). Furthermore, States have an obligation to take action against stereotypes, prejudices and harmful practices concerning disabled persons (CRPD Article 8(1)(b)), as well as to foster awareness of the capabilities and contributions of disabled persons (CRPD Article 8(1)(c)). In light of this, States are supposed to maintain effective public awareness campaigns, including an obligation to support respect for disability rights at all levels of the education system (CRPD Article 8(2) (a)). Thus, Rule 1 of the Standard Rules provides that ‘States should take action to raise awareness in society about persons with disabilities, their rights, their needs, their potential and their contribution.’ States should therefore distribute information on available services and programmes addressing not only disabled persons, but also the general public. Such information should be made available in formats that can be understood by people with communication impairments (Rule 1(a)).  Jean K.  Seale, E-Learning and Disability in Higher Education: Accessibility Research and Practice (Routledge, 2013) at 223. 66  UN GA Res 2542 (XXIV) of 11 December 1969. 67  Law No. 84 of May 21, 1970. 68  Furlan and Family v. Argentina, Case 531-01, Judgment of 31 August 2012, Preliminary Objections, Merits, Reparations and Costs. 65

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The obligation to provide disability rights compels States to ensure the enjoyment of fundamental rights whenever an individual or group is unable to enjoy them for reasons beyond their control. Within this framework, States have a wide margin of appreciation concerning the most appropriate facilitation measures where these are not explicitly determined in international instruments. An example is the impact of COVID-19 on people with disabilities. The WHO considers that pandemics have affected persons with disabilities more than the rest of the population, exposing them to a greater risk of contracting the virus in light of barriers to accessing essential hygienic measures, for instance, hand-washing.69 For States, this requires the taking of specific measures such as making COVID-19-related information for disabled persons accessible and working with industry to ensure adequate support in the emergency situation created by the virus.70 Another such emergency situation is war, whereby States have to take additional measures to ensure the enjoyment of disability rights.71 Establishing whether, and to what degree, a State is compliant with its obligation to fulfil human rights is a complex task. Fundamentally, this entails monitoring progressive realisation, whereby States must prove that they use all available resources to achieve the objective.72 In this respect, CRPD Article 4 requires that State Parties undertake to ensure and promote the full enjoyment of disability rights and freedoms without discrimination. To achieve this aim, States must adopt all necessary regulatory measures, considering disability rights in all their policies and programmes (CRPD Article 4(1)(a)–(c)). Rule 14 of the Standard Rules further affirms this obligation, which includes the taking of measures at the national, regional and local levels. States must also ensure that public authorities act in accordance with disability rights under the CRPD, take necessary measures to eliminate discrimination by private natural and legal persons, foster the development of universal goods, services and technologies that can be used by disabled and non-­ disabled persons alike, and train professionals and staff working with disabled persons (CRPD Article 4(1)(d)–(f)). In this regard, Rule 19 of the Standard Rules provides that States are responsible for ensuring the adequate training of personnel involved in programmes and services concerning disabled persons. More specifically, CRPD Article 4(2) establishes that States must take measures with a view to the full realisation of second-generation fundamental rights, based on all available resources and international cooperation, and without prejudice to duties that are

 WHO, Disability Considerations during the COVID-19 Outbreak (2020) at 8.  Ibid. 71  Fabricio E Balcazar and Daniel Balcazar, ‘War and Disability: Stories of Dread and Courage’, in Edurne Garcia Iriarte, Roy McConkey and Robbie Gilligan, Disability and Human Rights: Global Perspectives (Palgrave, 2016) 98. 72  CteESCR, The Nature of States Parties Obligations (Art 2(1) of the Covenant), General Comment No. 3, UN Doc. E/1991/23 (1990) at paras 9–10: ‘In order for a State party to be able to attribute its failure to meet at least its minimum core obligations to a lack of available resources it must demonstrate that every effort has been made to use all resources that are at its disposal in an effort to satisfy, as a matter of priority, those minimum obligations.’ 69 70

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immediately applicable under the CRPD.  In so acting, States must consult with disabled persons via their representative organisations. Along these lines, Rule 18 of the Standard Rules provides that States recognise the right of organisations to represent persons with disabilities at the national, regional and local level. Scholars agree that the State and the community need to work together to effectively implement disability rights.73 Data collection is of crucial importance to understanding the situation of disabled persons and to the fulfilment of their rights, affording policy-makers and legislators the necessary background to adopt effective policies.74 Thus, Rule 13 of the Standard Rules establishes State responsibility for the collection of information on the living conditions of persons with disabilities. Monitoring individual experiences should be as inclusive as possible, involving women, men, elderly people and children from urban and rural areas, as well as persons from different socioeconomic and ethnic backgrounds, with intellectual, physical, mental and sensory disabilities.

1.4  Responsibility of International Organisations Scholars consider that, ‘under international law, governments are obliged to provide human rights protection to all’, particularly ‘the most vulnerable’, including ‘persons with disabilities’.75 In addition, ‘the international community’, including ‘intergovernmental organizations, transnational corporations and the global civil society’ is ‘called upon in its responsibility to promote and protect human rights and fundamental freedoms’.76 For the purpose of this contribution, such a broad approach raises the question of the responsibilities of international organisations and other sovereign entities with respect to disability rights. Whilst the provisions of the CRPD refer to ‘States Parties’, Article 44 of the Convention establishes for ‘regional integration organisations’ the possibility of acceding to it. In fact, under CRPD Article 44(2) a reference to ‘State Parties’ in the Convention applies to regional economic organisations within the limits of their competence. A similar provision is embedded in Articles 12 and 13 of the Optional Protocol to the Convention on the Rights of Persons with Disabilities (‘CRPD Optional Protocol’). Thus far, the EU is the only international organisation that is a party to both the CRPD and the CRPD Optional Protocol. Given that both the EU and its constituent Member States are parties to the CRPD, in matters of exclusive

 Basser and Jones, ‘The DDA and the Tripartite Approach’ (2002) at 283.  Paola Pinto, ‘Monitoring Human Rights: A Holistic Approach’, in Marcia H Rioux, Lee Ann Basser and Melinda Jones (eds.), Critical Perspectives on Human Rights and Disability Law (Brill, 2011) 451, at 455. 75  Ibid., at 452. 76  Ibid. 73 74

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EU competence the Union is to be considered the sole party to the Convention and vice-versa; otherwise, the CRPD is concluded as a mixed agreement.77 Outside the scope of the CRPD, international organisations are bound by disability rights in the exercise of their functions according to their constitutive treaties. For instance, Article 1(3) of the UN Charter establishes that one of the objectives of that organisation is ‘promoting and encouraging respect for human rights and for fundamental freedoms for all’. Thus, in addition to the obligation to respect human rights, which concerns all subjects, the UN has an obligation to protect and fulfil disability rights, notably to promote them. The UN has indeed played a crucial role in this area, with several initiatives culminating in the adoption of the CRPD.78 The CRPD and CRPD Optional Protocol institute the CteRPD as a UN body of 18 experts meeting biannually in Geneva to consider the reports of the parties and shadow reports from civil society for the purpose of monitoring the implementation of the CRPD and issuing recommendations in the form of ‘concluding observations’.79 The Committee also receives individual communications and has a power to enquire proprio motu (CRPD Optional Protocol Article 6(2)). This is an example of the way in which the UN, as an international organisation, fulfils its obligations to protect human rights with respect to third parties, notably States. For instance, in 2019 Australia submitted to the CteRPD the combined Second and Third Reports under the CRPD and the Committee provided concluding observations, underscoring, inter alia, a lack of nationally consistent measures for the collection and public reporting of disaggregated data on the obligations under the CRPD, as well as the need for adequate funding and monitoring mechanisms.80 A shadow report was submitted in 2019 by the Australian Disabled People’s Organisations (‘DPOs’), Disability Representative Organisations (‘DROs’) and Disability Advocacy Organisations.81 Furthermore, by means of ‘General Comments’, the CteRPD provides an authoritative interpretation of rights and duties under the CRPD.82 In September 2006, the UN Chief Executives Board for Coordination established the Inter-Agency Support Group on the Convention on the Rights of Persons with Disabilities: the Group encompasses UN departments, such as the UN Secretariat,  See EU, Declaration, CRPD, UN Treaty Collection, https://treaties.un.org/pages/ViewDetails. aspx?src=TREATY&mtdsg_no=IV-15&chapter=4#EndDec. 78  See Chap. 8 on the UN system by Quirico in this volume. 79  OHCHR, State Parties Reports under the Convention on the Rights of Persons with Disabilities, https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID= 4&DocTypeID=29; Id, Concluding Observations, https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=5. 80  Australia, Combined Second and Third Periodic Reports under Article 35 of the Convention, UN Doc. CRPD/C/AUS/2-3, 5 February 2019; CtRPD, Concluding Observations on the Combined Second and Third Reports of Australia (Advance Unedited Version), UN Doc. CRPD/C/AUS/ CO/2-3, 15 October 2019, at paras 58 and 62. 81  Australian Civil Society, Disability Rights Now: Shadow Report to the United Nations Committee on the Rights of Persons with Disabilities (2019), https://dpoa.org.au/wp-content/uploads/2019/08/ CRPD-Shadow-Report-2019-English-PDF.pdf. 82  CtRPD, General Comments, https://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx. 77

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agencies, such as the WHO, funds, such as the UN Development Programme, and observers, such as the World Bank, with a view to coordinating UN work under the CRPD.83 For example, the WHO has a crucial role to play in fulfilling ‘the right to the enjoyment of the highest attainable standard of health’ under CRPD Article 25. Thus, the WHO launched the World Report on Disability on 9 June 2011, collaborates on disability with the World Bank according to the CRPD, and supports the work of the CteRPD.84 The WHO also established a Task Force on Disability to ensure accessibility for the disabled and the mainstreaming of disability rights in technical programmes.85 The ILO is another UN Specialised Agency and promotes disability labour standards, including a set of initiatives, ranging from wage employment for persons with disabilities to labour market statistics.86 At the regional level, there are several examples of organisations taking initiatives that fulfil disability rights, in accordance with general international law as established, for instance, in the Universal Declaration of Human Rights (‘UDHR’).87 In implementing disability policies, the Association of South-East Asian Nations (‘ASEAN’) has established the ASEAN Disability Forum, providing an interface with organisations representing peoples with disabilities.88 The League of Arab States has played an important role in the implementation of initiatives such as the Arab Decade for Persons with Disabilities 2004–2013.89 The OAS fulfils disability rights particularly via the Department of Social Inclusion and monitors the implementation of the CIADDIS via the Committee for the Elimination of All Forms of Discrimination against Persons with Disabilities (‘CEDDIS’).90 The AU declared 1999–2009 the first African Decade of Persons with Disabilities, focusing on partnerships throughout society and assisting vulnerable groups, such as persons with intellectual disabilities; the AU also proclaimed 2009–2019 the second African Decade of Persons with Disabilities, addressing disability in the context of disaster

 Department of Economic and Social Affairs, Inter-Agency Support Group for the Convention on the Rights of Persons with Disabilities, https://www.un.org/development/desa/disabilities/about­us/inter-agency-support-group-for-the-convention-on-the-rights-of-persons-with-disabilities.html. 84  WHO and World Bank, World Report on Disability (2011). 85  Ala Din Alwan (WHO Assistant Director-General for Non-communicable Diseases and Mental Health), Entry into force of the Convention on the Rights of Persons with Disabilities, https:// www.who.int/disabilities/conventionstatement/en. 86   ILO, Disability and Work, https://www.ilo.org/global/topics/disability-and-work/ lang%2D%2Den/index.htm. 87  UN GA Res. 217/A of 10 December 1948. 88  ASEAN Disability Forum, https://www.aseandisabilityforum.com. 89  UN Enable, Arab Decade of Disabled Persons 2003–2012, https://www.un.org/esa/socdev/ enable/disarabdecade.htm. 90  OAS Department of Social Inclusion and Disability (2020) http://www.oas.org/en/sedi/ddse/ pages/index-4_dsde.asp; OAS, The Committee for the Elimination of all Forms of Discrimination against Persons with Disabilities (2020) http://www.oas.org/en/sedi/ddse/pages/index-­4_committee.asp. 83

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management, refugees and displaced persons.91 The European Commission has adopted an articulate 2021–2030 Strategy for the Rights of Persons with Disabilities, aiming to achieve full social and economic inclusion under the CRPD.92 By means of international organisations, Member States fulfil their human rights obligations under the CRPD and other international instruments. For instance, under CRPD Article 33 States must establish focal points and coordination mechanisms at the governmental level to implement disability rights under the Convention, as well as mechanisms to promote, protect and monitor implementation. At the same time, States may remain bound by disability duties, given that, particularly depending on the division of power, the responsibility of an international organisation does not necessarily exclude State responsibility, as codified in Article 48 of the 2011 International Law Commission’s (‘ILC’) Draft Articles on the Responsibility of International Organisations.93

1.5  Responsibility of Other Sovereign Entities No ‘atypical’ sovereign entity is currently a party to the CRPD.  However, the Vatican City State, as well as the Holy See, as the highest level of its government, have been significantly proactive in promoting disability rights, particularly in order to reconcile the Church leadership with past negative attitudes vis-à-vis the disabled. Thus, in preparation for the Jubilee of 3 December 2000, an ad hoc Committee adopted a document underscoring the position of the disabled as a ‘privileged interlocutor of society and the Church’.94 The Jubilee Document meaningfully establishes a set of positive duties for the Church and its components, with an emphasis on the obligation to fulfil disability rights. It states that the civil and ecclesial communities must work to make every environment of society accessible to all, identify essential disability policy models for attaining equal opportunities, and propose cooperation mechanisms between governments, UN bodies and other inter-governmental organisations and associations of disabled persons, enabling States to achieve equal opportunities for the disabled.95 In light of the concept of ‘charity’, the document establishes that, inter

 Aïda Sarr and Kudakwashe Dube, ‘Second African Decade of Persons with Disabilities’ (2010) 35 Forced Migration Review 7. 92  European Commission, Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030, COM(2021) 101 final. 93  ILC, ‘Report to the UN General Assembly on the Work of its Sixty-third Session’ (2011) II(2) YBILC 1, at 44. 94  CteJDCPD, Preparation for the Jubilee Day 3 December 2000, Part Five, The Person With Disabilities: The Duties of the Civil and Ecclesial Community, July 2000, http://www.vatican.va/ jubilee_2000/jubilevents/jub_disabled_20001203_scheda5_en.htm. 95  Ibid., at I – Disability in International Documents – In Brief. 91

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alia, the Church should propose a positive image of the disabled and support health-­ assistance, with particular regard to the right to life.96 It also fosters the removal of physical barriers and promotion of education for the disabled within the Church, including the assignment of adequate resources to the disability sector and the monitoring of the implementation of disability rights in State policies.97 The Church is also requested to act when the State does not afford the means for a dignified life, and to prompt missionary Congregations, Catholic NGOs as well as Diocesan Mission Offices to be attentive to the needs of persons with disabilities.98 Given that it emanates from the Committee for the Jubilee Day of the Community with Persons with Disabilities (‘CteJDCPD’), an official Vatican organ, in light of the ILC’s Guiding Principles Applicable to Unilateral Declarations of States Capable of Creating Legal Obligations, it might be argued that the Jubilee Document creates binding legal duties for the Vatican City State and the Holy See vis-à-vis third persons.99 On the UN-sponsored international day of disabled persons, Pope Francis, who is the sovereign of both the Holy See and the Vatican City State, urged a recognition that ‘every person with a disability’ offers a ‘unique contribution to the common good.’100 On a more practical ground, the Vatican Museums allow free entrance for all disabled visitors with a certified invalidity over 74%.101 The Sovereign Order of Malta has also taken practical initiatives to support disability rights, notably by organising holiday camps, residential homes and day centres for people with disabilities.102 However, ‘atypical’ sovereign entities are only bound to respect, protect and fulfil disability duties under human rights treaties to which they are parties, such as the CRC, as concerns the Vatican City State, as well as customary international law, as codified, for instance, in the UDHR. Notably, the Vatican City State has decided not to sign and ratify the CRPD because of concerns about Article 25, which requires States to develop ‘reproductive health and population-based public health programs’, and could be interpreted as fostering abortive practices.103

 Ibid.  Ibid. 98  Ibid. 99  ILC, ‘Report to the UN General Assembly on the Work of Its Fifty-Eight Session’ (2006) II(2) YBILC 1, at 161. 100  Inés San Martín, ‘On Day of the Disabled, Pope Calls for ‘Full Integration’ in Society’, Crux, 3 December 2019. 101  Vatican Museums, Accessibility, http://www.museivaticani.va/content/museivaticani/en/visita-­ i-­musei/servizi-per-i-visitatori/accessibilita.html. 102  Order of Malta, Upholding Human Dignity by Reaching Out to the Excluded (2020) http:// www.orderofmalta.int/humanitarian-medical-works/social-assistance. 103  Christina James, ‘Catholicism and Disability: Sacred and Profane’, in Darla Schumm and Michael Stoltzfus, Disability in Judaism, Christianity and Islam (Palgrave, 2011) 167, at 168. See Chap. 3 by Quirico, Williams, Morss and Gao in this volume. 96 97

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1.6  Conclusion Applying human rights to disability (or rectius, different hability) compels a review of, and thereby the progressive development of, fundamental rights. Some scholars have argued that disability rights entail a revision of the classical tripartite human rights architecture, based on the obligations to respect, protect and fulfil first-, second- and third-generation human rights. In their view, new categories including so-called fourth- and fifth-generation fundamental rights should be established.104 States are the main subjects of disability duties: they are the primary addressees of provisions under the CRPD and they particularly have to take a proactive approach under the duty to fulfil disability rights. Regional economic organisations are equated to States under CRPD Article 44(2): this is notably the case of the EU as the only international organisation that is currently a party to the CRPD. Other international organisations are bound by their constitutive instruments to respect, protect and fulfil human rights, and thus also disability rights, as in the case of the UN Charter. States also fulfil their duties under the CRPD by means of international organisations; for instance, the UN CteRPD is a vehicle for compelling States to achieve the objectives of the Convention. Other sovereign entities are bound by disability duties under specific human rights treaties to which they are parties, such as the CRC, customary international law and possibly unilateral declarations: the Holy See and Vatican City State are particularly active in the area of disability. Whereas the regulation of disability requires a progressive development of fundamental rights and underscores the need for a ‘pluralisation’ of human rights addressing specific categories of persons,105 the classical tripartite approach to fundamental rights still seems to provide a valid interpretive framework to understand disability rights. At least for the time being, disability rights do not challenge the distinction between the obligations to respect, protect and fulfil first-, second- and third-generation fundamental rights, but entail a revision of existing human rights within these general categories. Fundamentally, CRPD Articles 10–23 and Article 29 regulate civil and political (first-generation) rights, Articles 24–28 and 30 set out economic, social and cultural (second-generation, or welfare) rights, whilst subsection (g) of the Preamble and Article 32(1)(a) incorporate sustainable development (third-generation) rights. Because of the differential situation of disabled persons, and in order to avoid discrimination, all of these rights entail not only a negative obligation of non-interference, but also a particular emphasis on positive State action to protect and fulfil such rights, at the pace of immediate or progressive implementation, in order to implement a social approach to disability. Within the tripartite framework, regulatory instruments on disability rights complement general human rights treaties and other general conventions, adding

 French, Human Rights (2008) at 12.  Frédéric Mégret, ‘The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights?’ (2008) 30(2) Human Rights Quarterly 494, at 515.

104 105

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substantial ‘semantic texture’ as lex specialis.106 This is particularly so in the case of the CRPD, which is a ‘codification’ convention that aims to ‘harmonise’ disability law. Thus, CRPD Article 12 explicitly posits the concept of ‘autonomy’, which is only an implicit notion underpinning general human rights treaties.107 Whereas UDHR Article 6 and ICCPR Article 16 refer to the ‘recognition’ of anyone ‘everywhere as a person before the law’, CRPD Article 12(3) adds specific ‘support’ for persons with disabilities in exercising their legal capacity. Similarly, the right to health under CRPD Article 25 is formulated in such a way as to specifically point out the needs of the disabled, as compared to UDHR Article 25 and ICESCR Article 12. Arguably, if it were formulated today, ICESCR Article 12 would explicitly include the rights of the disabled, in addition to those of the child. Furthermore, the CRPD outlines, often in detail, procedures to implement disability rights. For instance, CRPD Article 4(1)(c) compels States to mainstream concerns for persons with disabilities and Article 8(2)(d) fosters the training of specialised personnel.108

References109 Documents Australia. 2019. Combined Second and Third Periodic Reports under Article 35 of the Convention. UN Doc. CRPD/C/AUS/2-3. Australian Civil Society. 2019. Disability Rights Now: Shadow Report to the United Nations Committee on the Rights of Persons with Disabilities. Convention on the Law of the Sea, opened for signature 10 December 1982, 1833 UNTS 3, entered into force 16 November 1994. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. CteESCR. 1990. The Nature of States Parties Obligations (Art 2(1) of the Covenant). General Comment No. 3, UN Doc. E/1991/23. CteESCR. 1990. The Nature of States Parties’ Obligations (Art.2(1) of the Covenant). General Comment No 3 contained in UN HCHR Doc. E/1991/23. CtJDCPD. 2000. Preparation for the Jubilee Day 3 December 2000, Part Five, The Person with Disabilities: The Duties of the Civil and Ecclesial Community. http://www.vatican.va/ jubilee_2000/jubilevents/jub_disabled_20001203_scheda5_en.htm. CtRPD. 2014. Article 9 – Accessibility, General Comment No. 2, UN Doc. CRPD/C/GC/2. CtRPD. 2019. Concluding Observations on the Combined Second and Third Reports of Australia (Advance Unedited Version). UN Doc. CRPD/C/AUS/CO/2-3. CtRPD. 2020. General Comments. https://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx.

 Ibid., at 503.  Ibid., at 513. 108  Ibid., at 503–507. 109  Websites accessed 18 January 2022. 106 107

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Eide, A. 1983. The Right to Adequate Food as A Human Right. Report. UN Doc. ­E/CN.4/ Sub.2/1983/25. Eide, A. 1987. The Right to Adequate Food as A Human Right. Report. UN Doc. E/CN.4/ Sub.2/1987/23. ESCAP. 2013. Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific. Resolution 69/13. European Commission. 2021. Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030, COM(2021) 101 final. HRCte. 2004. Nature of the General Legal Obligation Imposed on States Parties to the Covenant, General Comment No. 31, UN Doc. CCPR/C/21Rev.1/Add.13. ILC. 2001. Report of the International Law Commission on the Work of Its Fifty-Third Session. UN Doc. A/56/10. Yearbook of the International Law Commission II(2): 1. ILC. 2006. Report on Fragmentation of International Law: Difficulties Arising from the Diversification and Expansion of International Law. UN Doc. A/CN.4.L.682. YBILC II(2): 1. ILC. 2006. Report to the UN General Assembly on the Work of Its Fifty-Eight Session. YBILC II(2): 1. ILC. 2011. Report to the UN General Assembly on the Work of Its Sixty-Third Session. YBILC II(2): 1. ILO. 1955. Vocational Rehabilitation (Disabled) Recommendation. Doc R099. ILO. 2015. Decent Work for Persons With Disabilities: Promoting Rights in the Global Development Agenda. Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities, opened for signature 8 June 1999, AG/RES. 1608 (XXIX-O/99), entered into force 14 September 2001. International Covenant on Civil and Political Rights, opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976. International Covenant on Economic, Social and Cultural Rights, opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. Japan. 1970. Fundamental Law for Countermeasures for Mentally and Physically Handicapped Persons. Law No. 84. OHCHR. 2005. Principles and Guidelines for a Human Rights Approach to Poverty Reduction Strategies. https://www.ohchr.org/EN/Issues/Poverty/DimensionOfPoverty/Pages/ Guidelines.aspx. OHCHR. 2009. Thematic Study on the Structure and Role of National Mechanisms for the Implementation and Monitoring of the Convention on the Rights of Persons with Disabilities. UN Doc. A/HRC/13/29. OHCHR. 2012. Training Package on the Convention on the Rights of Persons with Disabilities: What Is Disability? Optional Protocol to the Convention on the Rights of Persons with Disabilities, opened for signature 13 December 20016, 2518 UNTS 283, 3 May 2008. Order of Malta. 2020. Upholding Human Dignity by Reaching Out to the Excluded. http://www. orderofmalta.int/humanitarian-­medical-­works/social-­assistance. Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa, adopted 19 January 2018. UN General Assembly. 1948. Universal Declaration of Human Rights. Res. 217/A. UN General Assembly. 1969. Declaration on Social Progress and Development. Res. 2542(XXIV). UN General Assembly. 1971. Declaration on the Rights of Mentally Retarded Persons. Res. 2856(XXVI). UN General Assembly. 1975. Declaration on the Rights of Disabled Persons. Res. 3447(XXX). UN General Assembly. 1982. World Programme of Action Concerning Disabled Persons. Res 37/52. UN General Assembly. 1991. The Protection of Persons with Mental Illness and the Improvement of Mental Health Care. Res. 46/119.

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UN General Assembly. 1993. Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Res. 48/96, Annex. UN General Assembly. 2001. Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities. Res. 56/168. UNenable. 2007. Human Rights and Persons with Disabilities. https://www.un.org/esa/socdev/ enable/rights/humanrights.htm. UNHCHR. 2010. Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors. US. 1990. Americans with Disabilities Act. Vienna Convention on Diplomatic Relations, opened for signature 24 April 1963, 596 UNTS 261, entered into force 19 March 1967. Vienna Convention on the Law of Treaties, opened for signature 23 May 1969, 1155 UNTS 331, entered into force 27 January 1980. Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159), opened for signature 20 June 1983, 1401 UNTS 235, entered into force 20 June 1985. WHO. 2011. World Report on Disability. WHO. 2020. Disability Considerations during the COVID-19 Outbreak. World Bank Group. 2018. Disability Inclusion and Accountability Framework.

Cases Airey v. Ireland, ECtHR, Appl 6289/73, Judgment of 9 September 1979. Furlan and Family v. Argentina, IACtHR, Case 531-01, Judgment of 31 August 2012. RP and Others v. the United Kingdom, ECtHR, Case 38245/08, Judgment of 9 October 2012. Vincent v. France, ECtHR, Case 6253/03, Judgment of 24 October 2006. Ximenes-Lopes v. Brazil, IACtHR, Ser. C, No. 149, Judgment of July 4 2006.

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Chapter 2

Non-State Persons and Disability Rights and Duties Timothy Fadgen

Contents 2.1  2.2  2.3  2.4 

Introduction Non-State Persons under the Convention on the Rights of Persons with Disabilities NGOs and CRPD Corporations 2.4.1  A Duty to Respect and Fulfil Disability Rights: General Initiatives 2.4.2  Initiatives Specifically Addressing People with Disabilities 2.4.3  Enforcement Mechanisms 2.5  Individuals and Disability Rights and Duties 2.5.1  Individuals and Disability Rights 2.5.2  Individuals and Duties to Those with Disabilities 2.6  Conclusion References

 28  29  31  35  35  38  40  41  41  43  45  46

Abstract  The tripartite disability (different ability) rights categorisation, which was initially established for States, undergoes adjustments when it is applied to non-­ State persons. In fact, as they exercise sovereign power, States and international organisations are the primary addressees of the duty to implement human rights. NGOs, corporations and individuals have different functions in society, given that they are legally able to act exclusively by means of ‘contractual’ power, that is, in their private capacity, and attract disability duties to a different extent. The chapter argues that individual disability rights primarily entail for NGOs, corporations and natural persons correlated duties to respect such rights and progressively expanding obligations to fulfil them. Keywords  Tripartite human rights · Disability (different ability) rights · Obligation to respect, protect and fulfil disability rights · First-, second- and third-generation disability rights · Natural persons · NGOs · Corporations

T. Fadgen (*) Politics and International Relations and Public Policy Institute, University of Auckland, Auckland, New Zealand e-mail: [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_2

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2.1  Introduction Considerable attention has been paid to the roles and responsibilities of States and international organisations in securing the human rights of individuals with disabilities (more properly, different abilities). Non-sovereign entities, such as non-­ governmental organisations (‘NGOs’), corporations and individuals, however, remain critically important to the effective enforcement of these principles. There is therefore an emphasis for NGOs, corporations and individuals on the duty to fulfil disability rights, rather than on the duty to respect them. Within this general framework, NGOs, businesses and individuals have different functions in society. Therefore, whilst they share the feature of being legally able to act only by means of ‘contractual’ power, that is, in their private capacity, NGOs attract disability duties to a different extent, because of their specific societal functions. Businesses have disability duties principally within the context of the scope of their economic activity. Different types of NGOs exercise different functions; whilst some are specialised in the area of disability and are thus integral to the action necessary to make disability rights effective, others are not and attract disability rights and duties due to their social aims and functions. Similarly, individuals with disabilities can be the addressees of disability rights but they also have a general duty to respect disability rights and may, depending on their particular social role, such as when they stand in the position of a medical professional or an employer, have additional duties of care to individuals with disabilities. This chapter analyses the way in which disability rights apply to different non-­ State actors. The chapter first considers the role of the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’)1 in establishing the roles and responsibilities of non-state actors within the domain of disability rights. Second, the chapter considers the role of NGOs with respect to disability rights. Third, this section considers the role of employers and the recognition of certain labour rights. This is an important venue for disability rights recognition because corporations employ people with disabilities. Finally, the contribution considers the position of individuals with respect to disability rights and duties. In this regard, the chapter first considers individuals with disabilities as the addressees of disability rights and second assesses the position of individuals as the addressees of obligations vis-à-vis people with disabilities.

 Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008.

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2.2  N  on-State Persons under the Convention on the Rights of Persons with Disabilities The CRPD marked a paradigm shift in how people with disabilities were viewed and how they would be able to participate in domestic policymaking and advocacy functions. The CRPD advances a social model of disability rights that, among other innovations, not only requires the full participation of individuals with disabilities in these domestic processes but also secures a place for disability rights and advocacy organisations as members of civil society in Article 33 of the CRPD.2 This shift has not only taken place at the international and governmental level but also in those NGOs, both national and international, dedicated to the rights of persons with disabilities.3 Some argue that the Convention goes beyond all previous human rights instruments by creating ‘an explicit positive legal obligation on States to see their input in all levels of development monitoring and implementation of disability rights’ in Article 43.4 Indeed, these principles of participation are a constant theme throughout the CRPD and constitute a pinnacle of disability rights advocacy that have been building across many countries, particularly those in the Organization for Economic Cooperation and Development (‘OECD’). It is also well established that the CRPD is the first human rights convention to include an explicit role for national human rights institutions and civil society, in particular persons with disabilities and their representative organisations, to promote, protect and monitor national policy implementation. These latter measures to ensure participation have been viewed as necessary to create and support the preconditions necessary to ensure the realisation of the Convention at a domestic level. Sabatello and Schulze have also observed that the CRPD has entrenched the Vienna Declaration and Programme of Action in that it ‘builds a bridge between the national and international levels’ of governance and re-emphasizes the ‘growing importance of civil society involvement’ and ‘the participation of persons with disabilities and their representative organizations’ in that process.5 Just what the nature of participation means, and how to ensure that it is meaningful, has been an area of disagreement. The CRPD is seen to embody the disability rights movement’s mantra: ‘nothing about us, without us’.6 While under the CRPD

2  Valentin Aichele, ‘Article 33: National Implementation and Monitoring’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 978, at 1007. 3  Gauthier De Beco and Alexander Hoefmans, ‘National Structures for the Implementation and Monitoring of the UN Convention on the Rights of Persons with Disabilities’, in Gauthier De Beco (ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities (Brill, 2013) 9. 4  Maya Sabatello and Marianne Schulze (eds.), Human Rights and Disability Advocacy (University of Pennsylvania Press, 2013). 5  Ibid., at 220. 6  See Chap. 7 by Ioli on the right to participation in this volume.

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the State maintains a central role in its position as a primary guarantor and implementer of human rights,7 Article 4 states in unambiguous terms that each ‘State party shall closely consult with and actively involve persons with disabilities including children with disabilities through their representative organizations.’ Furthermore, the Paris Principles also guarantee the participation of civil society and independent mechanisms, although there is no single uniform definition for the term ‘civil society’.8 The intention here is to go beyond merely disability rights NGOs to include trade unions, professional associations and any organisation or entity within a society. Moreover, merely ensuring a seat at the table would be insufficient. The CRPD recognises that people with disabilities must be able to express their opinions and otherwise participate fully in deliberations and debate about disability policies and practices that affect them. Since the very nature of disability might limit their ability to participate meaningfully in these deliberations, States have an obligation to provide the means for their full participation, including an affirmative obligation to support capacity building in some circumstances.9 Others have argued that CRPD Article 33(3), which establishes a formal monitoring role for civil society generally and civil society organisations for people with disabilities and their advocacy organisations in particular, should be read in conjunction with Article 4(3), which states that, when a State is developing new legislation or policies around the Convention and in all other decision-making related to persons with disabilities, they ‘shall closely consult with and actively involve’ individuals with disabilities in the process from the beginning.10 This wording transcends mere consultation by including the more definite language establishing active involvement as a requirement for the monitoring (and by extension formation) of policies which impact individuals with disabilities. Recent work has affirmed the CRPD’s normative criteria of direct participation of those with disabilities.11 Moreover, a significant proportion of countries report being in compliance with the CRPD, unlike many other human rights treaties. One view on why there is such a high degree of compliance is that the CRPD contains a high degree of delegation of regulatory functions to a wide range of actors.12 The regulatory regime created in the wake of the CRPD is tripartite in nature, including the State as the regulator and individual firms as the addressees of regulation, and a third group of actors consisting of public interest groups, consumer groups and NGOs. The resultant creation of a meta-regulatory framework, it is argued, evidences the withdrawal of State control over regulatory activities. This movement has at its heart the principle of direct  De Beco and Hoefmans, ‘National Structures’ (2013) at 19.  Ibid., at 57. 9  Ibid., at 58. 10  See Meredith Raley, ‘The Drafting of Article 33 of the Convention on the Rights of Persons with Disabilities: The Creation of a Novel Mechanism’ (2016) 20(1) Int’l J. Human Rights 138. 11  Sarah Arduin, ‘Taking Metaregulation to the United Nations Human Rights Treaty Regime: The Case of the Convention on the Rights of Persons with Disabilities’ (2019) 41(4) Law & Policy 411. 12  Ibid. 7 8

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community participation by those individuals and entities affected by the regulatory regime. Such community engagement serves to empower those engaged in the process and educate stakeholders about how these policies impact those affected by them.13 In the end, it is abundantly clear that since the adoption of the CRPD in 2006 the international expectation has been that individuals with disabilities, their organisations and other individual civil society entities, and other community members such as corporations, should each play a part in advancing the full integration of individuals with disabilities into all facets of community and civic life. The remainder of this chapter will consider the various implications of these provisions first for NGOs, then for corporations and finally for individuals.

2.3  NGOs and CRPD NGOs often play the role of both stakeholders in advocacy and policy development as well as of implementers of disability rights. These twin roles are particularly prominent within the social model of disability where their engagement is often necessary to overcome barriers and deter discrimination. Prior to the adoption of the CRPD, the International Disability Alliance (‘IDA’), a federation including different organisations of people with disabilities, ranging from Disabled Peoples’ International to the World Blind Union, was the reference point for NGOs within the United Nations (‘UN’). The IDA participated in monitoring the non-binding UN Standard Rules on the Equalization of Opportunities for People with Disabilities (‘Standard Rules’).14 NGOs played a vital role in the CRPD drafting and adoption process and are, for this reason, perhaps unsurprisingly ubiquitous throughout the Convention text: NGOs are key focal points under the CRPD and fundamental to the Convention’s implementation mechanisms. In fact, the CRPD is the most significant case of a convention that was adopted not only by means of inter-State diplomats, but also with the active participation of civil society.15 According to Gráinne de Búrca, the experimentalist nature of the CRPD is mostly rooted in the prominent role played by people with disabilities and NGOs during the negotiation process.16 NGOs had ample rights of participation, including in presenting written statements and oral  Ibid., at 415.  UN GA Res. 48/96 of 20 December 1993, Annex. 15  For an overview of the intervention of NGOs in negotiating international conventions, see George Edwards, ‘Assessing the Effectiveness of Human Rights Non-Governmental Organizations (NGOs) from the Birth of the United Nations to the 21st Century: Ten Attributes of Highly Successful Human Rights NGOs’ (2010) 18(2) Michigan State Journal of International Law 165, at 212–213. 16  Gráinne de Búrca, ‘Human Rights Experimentalism’ (2017) 111(2) American Journal of International Law 277. 13 14

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contributions to the proceedings. These groups produced joint statements and a daily Disability Negotiations Bulletin, which provided fundamental input in the progress of negotiations. NGOs brought disability activists from around the world to New York, thus extending participation in negotiations.17 Several provisions of the CRPD establish the fundamental role of civil society generally and NGOs in particular, in the implementation of disability rights. Article 4 of the CRPD, for example, indicates that States must develop and implement legislation and policies under the Convention in close consultancy with, and actively involving, persons with disabilities ‘through their representative organizations.’ Clearly, under CRPD Article 29(b), in order to implement the right to participation of people with disabilities, States must promote, inter alia, the participation of individuals with disabilities in non-governmental organisations. Another example is provided in Article 32, which concerns international cooperation. This Article demands that States act ‘in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities.’ Furthermore, Article 33(3) requires that civil society, including persons with disabilities and representative organisations, must be fully involved in the monitoring process for the implementation of the CRPD. In sum, NGOs should be viewed as playing an essential role in implementing the State duty to fulfil disability rights. At the national level, NGOs that are specialised in the area of disability have managed to make themselves essential in the process of implementation of the CRPD in different countries and under different political conditions. For instance, in Russia, NGOs implement the CRPD by shaping their activities following international paradigms of social inclusion and the Western approach to fundamental rights. Whilst this triggers the perception that they aim to reverse the status quo, NGOs have managed to avoid repression by involving official authorities in their activities.18 In Nepal, a developing country where the disabled are seen as outcasts, NGOs play a crucial role in filling the governmental gap in fulfilling disability rights to which the State has committed under international human rights treaties, including the CRPD.  Scholarly work shows that local NGOs, such as the Karuna Foundation in Kathmandu, promote disability rights in rural Nepal in a sustainable and efficient way by affording training, inclusiveness in employment, healthcare, rights advocacy and lobbying for governmental action. NGOs are thus considered ‘key to the implementation of disability laws because of their direct action within the communities they serve.’19 For instance, the Karuna Foundation made a health insurance scheme available to most people with disabilities in the rural areas of

 Janet E Lord, ‘Ngo Participation in Human Rights Law and Process: Latest Developments in the Effort to Develop an International Treaty on the Rights of People with Disabilities’ (2004) 10 ILSA Journal of International & Comparative Law 311, at 314. 18  Christian Fröhlich, ‘Civil Society and the State Intertwined: The Case of Disability NGOs in Russia’ (2012) 28(4) East European Politics 371, at 383. 19  Sristee Acharya, ‘Disability Law Implementation: The Role of NGOs and INGOs in Nepal’ (2017) 11 National Judicial Academy Law Journal 253, at 254. 17

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Kathmandu.20 In Brazil, NGOs started to advocate disability rights in the early 1980s and had a fundamental role in negotiating the CRPD at the sessions of the UN General Assembly ad hoc Committee established via Resolution 56/168 in 2001.21 Brazilian NGOs representing the disabled are mostly organised around different forms of impairment (physical, intellectual, and sensorial) and have played an important function in implementing the CRPD. Another example is provided by the Kingdom of Tonga, which has made strides in supporting disability rights NGOs. Tonga uses an NGO umbrella organisation to coordinate advocacy across a range of social issues including domestic violence, suicide prevention and mental health and physical disabilities through the Civil Society Forum of Tonga (‘CSFT’). Notable advocacy has been achieved both by individuals engaged in mental health and by disability policy organisations.22 However, scholars note that a significant limitation is that NGOs have excluded non-disabled persons from their decision-making processes, thus restricting the power of NGOs in their political struggle to advance disability rights.23 Some NGOs operate at the international level, where the IDA is still a key player. The IDA encompasses global and regional networks and currently comprises over 1100 organisations of persons with disabilities worldwide. Via member organisations, such as the International Federation for Spina Bifida and Inclusion International, the IDA claims to represent around one billion people with disabilities, that is, the largest and most marginalised vulnerable group. The IDA Board is comprised of full Members, with all Members mostly composed of persons with disabilities and their families. Based on the CRPD, the IDA promotes the rights of the disabled and supports organisations of persons with disabilities. An essential part of the activity of the IDA is the 2030 Sustainable Development Goals:24 the organisation promotes inclusive sustainable development.25 The IDA has headquarters in New York and Geneva and works across the UN to ensure that human rights and sustainable development processes uphold the highest standards under the CRPD. For instance, an IDA Task Force on Accessibility for Persons with Disabilities regularly reports to the Human Rights Committee.26 Some NGOs focusing on disability have a regional scope of operation. For instance, the IDA includes several NGOs active at the regional level, such as the European Disability Forum (‘EDF’), the African Disability Forum, the ASEAN  Ibid., at 278.  UN GA Resolution 56/168 of 19 December 2001, Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. 22  Timothy Fadgen, Mental Health Public Policy in Global Context: A Comparative Study of Policy Transfer in Samoa and Tonga (Springer Nature, 2020). 23  Lyusyena Kirakosyan, ‘Promoting Disability Rights for a Stronger Democracy in Brazil: The Role of NGOs’ (2016) 45(1) Non-profit and Voluntary Sector Quarterly 114, at 119. 24  UN DESA, The Seventeen Goals, https://sdgs.un.org/goals. 25  IDA, Who We Are (2020) https://www.internationaldisabilityalliance.org/about. 26  See further Chap. 8 on disability rights and the UN by Ottavio Quirico in this volume. 20 21

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Disability Forum and the Pacific Disability Forum (‘PDF’). The EDF is an umbrella NGO run by persons with disabilities and their families that claims to promote the rights of 100 million persons with disabilities in Europe.27 It has made the 2030 Agenda for Sustainable Development a key part of its programme in pursing the realisation of rights under the CRPD, as it commits to empowering people with disabilities as a vulnerable group. Concretely, for instance, the EDF reviews and assists States in the implementation of inclusive policies according to the Agenda for Sustainable Development.28 The PDF is a regional institution that partners with organisations of individuals with disabilities in the Pacific region to build their capacity and advocate the rights of people with disabilities.29 Full members include organisations such as the Australian Federation of Disability and the Fiji Association of the Deaf. Inclusive sustainability is a tenet for the organisation, which, among other initiatives, has initiated two projects in the Fiji to provide income and job opportunities for disabled women.30 With respect to NGOs that are not specialised in the area of disability, there is often a lack of focus on disability. Mainstream NGOs active in areas such as employment opportunities, education and healthcare do not consider people with disabilities stakeholders in their activities.31 Whilst some NGOs seem to pay attention to inclusiveness with respect to gender issues, they are not equally aware of inclusiveness with respect to disability. This is not the case of all NGOs, but, where they are aware of the relevance of disability to their activities, NGOs often consider inclusiveness to be excessively expensive.32 However, studies show that the costs of exclusion are much higher than those of inclusion.33 An inquiry among NGOs in Africa shows that several organisations assume that they cannot become inclusive if the State lags behind in terms of disability policies.34 In addition to the role they can play in fulfilling disability rights, NGOs must also respect disability duties, whether or not they operate specifically in the field of disability. Studies reveal that NGOs are often unaware of existing norms in the area of disability. For instance, field research shows that an organisation providing maternal healthcare in Southeast Asia had little knowledge that accessing the ground floor of

 EDF, Welcome to EDF (2020) https://www.edf-feph.org.  EDF, Sustainable Development Goals (2020) https://www.edf-feph.org/sustainable-developmentgoals-sdgs. 29  Pacific Disability Forum: A Partnership of Pacific Organisations of and for Persons with Disabilities, http://www.pacificdisability.org/Home.aspx. 30  PDF, What We Do: Women (2020) http://www.pacificdisability.org/What-We-Do/Women.aspx. 31  Jessica Niewohner, Shannon Pierson and Stephen J Meyers, ‘Leave No One Behind’? The Exclusion of Persons with Disabilities by Development NGOs’ (2020) 35(7) Disability and Society 1171, at 1174. 32  Ibid., at 1175. 33  Lena Banks and Sarah Polack, The Economic Costs of Exclusion and Gains of Inclusion of People with Disabilities (2014). 34  Niewohner Pierson and Meyers, ‘Leave No One Behind’? (2020) at 1175. 27 28

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a building via stairs is inconsistent with rules on accessibility.35 There is also a lack of knowledge about the relevance of the sustainable development goals to the disabled and the necessity of making information available to people with disabilities. Coordinators for programmes on the prevention of malaria reportedly have little knowledge of the CRPD.36

2.4  Corporations 2.4.1  A  Duty to Respect and Fulfil Disability Rights: General Initiatives One of the central aims of disability rights legislation and indeed the CRPD is the overcoming of social barriers to inclusion for individuals with disabilities. One of the central aspects of adult interpersonal and civic engagement is in the workplace and it is for that reason that efforts to secure equal access to work for those with disabilities has been one of the core aims of these initiatives. For some of the same reasons that the transition from a medical disability model that focused attention on the perceived deficits and limitation of individuals with disabilities to a social model that views social barriers to inclusion as the limitations to their full participation in civic life, securing full access to the workforce has posed ongoing challenges to the disability rights movement in reaching its full potential. Despite some positive developments, such as Microsoft reporting that slightly more than 6% of its workforce identified as having a disability, barriers remain for many people with disabilities.37 One of the barriers is the stubborn view held by many employers that individuals with disabilities are either uninterested in or unable to work. There is also a perception that engaging individuals with disabilities in the workplace will pose an undue burden in terms of costs for additional training or other accommodations. These beliefs are underscored by the fact that, while 182 countries have signed or ratified the CRPD, only 45 countries have sought to codify the principle that individuals with disabilities should have fair access to the workplace.38 Even where such policies are meant to ameliorate barriers to entry, numerous studies have found that a significant gap ‘between policy design and firm implementation persists’ for individuals with disabilities resulting in often insurmountable obstacles for entry to the

 Ibid., at 1174.  Ibid. 37  Microsoft Global Diversity & Inclusion Report (2020) https://aka.ms/2020DIReport. 38  UN Enable: Factsheet on Persons with Disabilities, https://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html. 35 36

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labour market.39 This is where attention to the corporate responsibility to eliminate such barriers and to create opportunities for individuals with disabilities to participate fully in the working life of their communities is crucial if the aspirations of the CRPD are to be realised. There are a number of voluntary instruments that encourage corporations to observe and uphold human rights in the conduct of their business, such as the Caux Round Table for Moral Capitalism’s Principles for Responsible Business (1994),40 the UN Global Compact (2000),41 the Guidelines for Multinational Enterprises of the Organisation for Economic Co-operation and Development (OECD: 2000)42 and the Tripartite Declaration of Principles Concerning Multinational Enterprises of the International Labour Organisation (ILO: 2000).43 Of particular significance is the Guiding Principles for Business and Human Rights (‘Guiding Principles’), which were adopted by the UN in 2011,44 replacing the Norms on the Responsibilities of Transnational Corporations and Other Business Enterprises with Regard to Human Rights (2003).45 Although they do not have binding effect, the Guiding Principles are the most comprehensive international instrument on corporate social responsibility (‘CSR’). These initiatives show that there is growing consensus on the need for transnational corporations to operate in an ethical and sustainable manner, beyond the need of positive returns for shareholders. The Guiding Principles, which establish an obligation to ‘protect, respect and remedy’ human rights, undergird these instruments.46 Some regulatory instruments support the integral application of the obligations to respect, protect and fulfil human rights to corporations.47 According to the Ruggie Report, the State bears the

 Nadeem Khan, Nada Korac-Kakabadse, Antonis Skouloudis and Andreas Dimopoulos, ‘Diversity in the Workplace: An Overview of Disability Employment Disclosures among UK Firms’ (2019) 26 Corporate Social Responsibility and Environmental Management 170; Mukta Kulkarni and Mark Lengnick-Hall, ‘Obstacles to Success in the Workplace for People with Disabilities: A Review and Research Agenda’ (2014) 13(2) Human Resource Development Review 158; Katharina Vornholt, Patrizia Villotti, Beate Muschalla, Jana Bauer, Adrienne Colella, Fred Zijlstra and Marc Corbière, ‘Disability and Employment: Overview and Highlights’ (2018) 27(1) European Journal of Work and Organizational Psychology 40. 40  https://www.cauxroundtable.org/principles. 41  https://www.unglobalcompact.org. 42  https://www.oecd.org/corporate/mne. 43  Fifth edition 2017. 44  John Ruggie, Guiding Principles on Business and Human Rights: Implementing the United Nations ‘Protect, Respect and Remedy’ Framework, A/HRC/17/31 (2011). 45  Pini Pavel Miretski and Sascha-Dominik Bachmann, The UN ‘Norms on the Responsibility of Transnational Corporations and Other Business Enterprises with Regard to Human Rights’: A Requiem (2012) 17 Deakin Law Review 5. 46  Ruggie, Guiding Principles (2011). 47  See, for instance, the Commonwealth of Australia, National Human Rights Consultation Report (2009) at 93: ‘individuals, corporations, non-government organisations and other social groups [are] responsible for respecting and refraining from breaching the rights of others, protecting the rights of others, and promoting human rights’. 39

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primary duty to protect against human rights abuses by third parties, including business enterprises, via policies, regulation and adjudication.48 This requires the taking of appropriate measures to prevent, investigate, punish and redress abuses. Corporations, by contrast, have a responsibility to respect human rights, which, according to the Ruggie Report, requires that they exercise due diligence to avoid fundamental rights infringement and to ameliorate the adverse impacts of any fundamental rights’ violations.49 This also entails greater access for victims to effective judicial and non-judicial remedies.50 Guiding Principle 2 establishes that States outline the expectation that all businesses domiciled in their jurisdiction respect human rights, including disability rights. Whilst the focus of this Principle is on the duty to ‘respect’ fundamental rights, it seems to also encompass more broadly an obligation to ‘fulfil’ them. Under Guiding Principle 4, where it is owned, controlled or substantially supported by a State, a company should take additional measures to protect the right-holder from human rights violations, including disability rights. Notably, under Guiding Principle 11, businesses must respect fundamental rights by not infringing upon them and by addressing impacts in which they are involved. These include, as a minimum, rights under the Universal Declaration on Human Rights (‘UDHR’),51 International Covenant on Civil and Political Rights (‘ICCPR’),52 International Covenant on Economic, Social and Cultural Rights (‘ICESCR’)53 and the ILO Declaration on Fundamental Principles and Rights at Work.54 Whilst none of these instruments directly include disability rights, general references to the obligation not to discriminate on ‘any grounds’ certainly encompass disability rights. Furthermore, rights under these instruments (lex generalis) are spelled out in detail with respect to the disabled by instruments such as the CRPD (lex specialis), which must be read harmoniously under Article 31(2) of the Vienna Convention on the Law of Treaties (‘VCLT’)55 and the Vienna Convention on the Law of Treaties between States and International Organizations or between International Organizations (‘VCLTIO’).56 The obligation to respect fundamental rights, and thus disability rights, applies to all companies, regardless of the size (Guiding Principle 14), in their operation and related conduct (Guiding Principle 13). Naturally, complex enterprises are more likely to have a bigger impact on disability rights, but this does not excuse smaller

 Ruggie, Guiding Principles (2011) at para. 6.  Ibid. 50  Ibid. 51  UN GA Res. 217/A of 10 December 1948. 52  Opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976. 53  Opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. 54  Adopted in 1998. 55  Opened for signature 23 May 1969, 1155 UNTS 331, entered into force 27 January 1980. 56  Opened for signature 21 March 1986, UN Doc. A/CONF.129/15, not yet into force. 48 49

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enterprises from their responsibilities in the case of a breach of disability rights. Guiding Principle 15 establishes that businesses must have a policy commitment to meeting their responsibility under the obligation to respect human rights; a due diligence process for identifying, preventing, mitigating and accounting for the ways in which they address their impact on human rights; and processes enabling remediation. Among other initiatives, the UN Global Compact provides that businesses should not only ‘support’, but also ‘respect’ the ‘protection’ of internationally proclaimed fundamental rights (Principle 1). Furthermore, Principle 6 demands the ‘elimination of discrimination in respect of employment and occupation’. Because of the nature of disability as a differential situation, whereby equal treatment entails indirect discrimination, these provisions entail for businesses a specific focus on the obligation not only to respect disability rights, but also to fulfil them. Of particular relevance is also Principle 8, which establishes that companies ‘promote greater environmental responsibility’; it is indeed interesting to see how businesses will implement this duty under the concept of ‘inclusive sustainability’, whereby the green revolution entails an obligation to include the disabled in the process of ‘greening’ the economy.57

2.4.2  I nitiatives Specifically Addressing People with Disabilities Within the framework outlined by general regulatory instruments, the ILO Guide for Business on the Rights of Persons with Disabilities specifies that respecting human rights is ‘a priority’.58 Technically speaking, there are situations that are straightforward and which can entail a breach of the obligation to ‘respect’ disability rights. This would be the case, for instance, if a company did not recruit a person with disabilities who had more qualifications than a non-disabled person, exclusively on the ground of their disability. Other examples are those of a company that impedes an employee with a disability from associating with trade unions or that forces labour, for instance, beyond legally scheduled time, by means of threat or violence. These are forms of direct discrimination that do not require the taking of specific action and could also take place against non-disabled persons. However, the specificity of disability makes businesses fundamentally responsible under the duty to fulfil disability rights, because action must be taken in order to exclude indirect discrimination. In fact, the scope of fundamental rights obligations

 HRCte, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc. A/HRC/44/30, 22 April 2020. 58  ILO, Guide for Business on the Rights of Persons with Disabilities (2017) at 19. 57

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for businesses depends on the context in which a corporation operates.59 According to the ILO Guide, the Guiding Principles and the UN Global Compact, businesses must not only ‘respect’ but also ‘support’ fundamental rights. Thus, corporations are required to design and adopt policies to respect human rights that include explicit references to persons with disabilities, notably to provide grounds for non-­ discrimination.60 Businesses must also establish complaint mechanisms that are accessible to persons with disabilities.61 The ILO Guide establishes, for instance, that businesses must advertise in their job publicity that a company is an equal opportunity and inclusive employer welcoming applications from all societal groups. Another obligation for business is that of affording the disabled reasonable accommodation. These are duties that include at the same time an obligation to respect disability rights and to fulfil them. This approach is consistent with CRPD Article 27, which regulates the right to work in the context of disability. Together with the freedom of association and the right to family life, the right to work is a central obligation within the Ruggie Review framework for corporations.62 Business is the primary source of investment and jobs, triggering economic growth, reducing poverty, and improving the rule of law. It is therefore with respect to the right to work that corporations have major disability rights obligations.63 CRPD Article 27 requires States to, inter alia, ‘[p]romote the employment of persons with disabilities in the private sector through appropriate policies and measures’; it is clear that this indirectly imposes duties on corporations as well. For example, States often establish employment quotas for people with disabilities, which entail for corporations a duty to effectively outline such quotas in their recruitment campaigns. Under this scheme, a corporation not designating a percentage of its employment quota for employees with disabilities would be in breach of the right to employment under Article 27 of the CRPD.  According to some scholars, disability labour rights would spawn new forms of fundamental rights, notably, the right to accessibility under CRPD Article 9 would institute fourth-generation human rights, whilst recreation- and leisure-related obligations under CRPD Article 30 would institute fifth-generation human rights.64

 John Ruggie, Protect, Respect and Remedy: A Framework for Business and Human Rights, A/ HRC/8/5, 7 April 2008, at 8, paras 23–25: ‘The corporate responsibility to respect human rights is the second principle. It is recognized in such soft law instruments as the Tripartite Declaration of Principles Concerning Multinational Enterprises and Social Policy, and the OECD Guidelines for Multinational Enterprises … to respect rights essentially means not to infringe on the rights of others – put simply, to do no harm … The scope of human rights-related due diligence is determined by the context in which a company is operating, its activities, and the relationships associated with those activities’. 60  ILO, Guide for Business (2017) at 19. 61  Ibid. 62  See John Ruggie, Protect, Respect and Remedy (2008) at para. 52. 63  John Ruggie, ‘Protect, Respect and Remedy’ (2008) Innovations, at 189. 64  Phillip French, Human Rights Indicators for People with Disability: A Resource for Disability Activists and Policy Makers (2008) at 12. 59

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It is worth noting that there have been some corporate and regulatory initiatives to disrupt the normal corporate mindset vis-à-vis disability from one of charity to one of CSR and, more importantly, to one that views disability as a more central part of the business operating model. For example, in 2019, New York State Comptroller Thomas P. DiNapoli began a call for corporations to begin to measure and report disability inclusion data.65 DiNapoli framed the call to action for corporations acting in New York State to see the disability rights question as part of a larger discourse that saw corporations embrace and advance other important social causes, including the fight against LGBTQI+ discrimination. This initiative is aimed at directing the investment practices of the New York State Pension Fund, which has considerable leverage in influencing corporate behaviour due to its substantial financial clout. While this effort is still underway, it could serve as a model for incentivising corporate conduct in relation to people with disabilities and in achieving the larger social and economic objectives of the disability rights movement.

2.4.3  Enforcement Mechanisms As concerns enforcement mechanisms, there are no effective international procedures for regulatory instruments addressing corporations.66 In fact, businesses are under ‘soft’ disability obligations:67 regulatory instruments rely primarily on good will and naming and shaming. Some scholars, have, indeed, gone as far as to invoke the jurisdiction of the International Criminal Court (‘ICC’) over corporations to make CSR effective.68 However, the ICC only has jurisdiction over the most serious offences in the international community and the responsibility of corporations for breaching disability rights does not fit squarely within this framework. Furthermore, attempts to include the responsibility of businesses within the Statute of the ICC failed during the travaux préparatories. More fundamentally, violations of disability rights trigger tortious responsibility more often than criminal liability. Therefore, the Ruggie Review framework considers it essential that corporations establish internal monitoring mechanisms.69 The perspective for enforcing international CSR initiatives should not be that of a supranational court, but rather coordination between domestic jurisdictions.  Denise Brodey, ‘How Business Leaders Are Introducing Disability Rights as a CSR Issue’, Forbes, 21 January 2019. 66   See, for instance, the International Council for Human Rights Policy, Human Rights Organisations: Rights and Responsibilities (2009). 67  See, in general, Ilias Bantekas and Lutz Oette, International Human Rights: Law and Practice (Cambridge University Press, 2013) at 661–673. 68  Jonathan Clough, ‘Not so Innocents Abroad: Corporate Criminal Liability for Human Rights Abuses’ (2005) 11 Australian Journal of Human Rights  – Current Approaches  – International Criminal Law. 69  John Ruggie, Protect, Respect and Remedy (2008) at paras 93–95. 65

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Whereas there is currently no international treaty for this purpose, existing initiatives such as the Guiding Principles already serve the purpose of establishing a ‘matrix’ that inspires domestic regulation, which is, in turn, binding and enforced via domestic adjudication. In this respect, for instance, Guiding Principle 25 establishes that ‘as part of their duty to protect against business-related human rights abuse’, States ‘must take appropriate steps to ensure, through judicial, administrative, legislative or other appropriate means, that when such abuses occur within their territory and/or jurisdiction those affected have access to effective remedy.’70 This rule complements Guiding Principles 2 and 3, which provide that States should ensure that all businesses domiciled in their jurisdiction respect human rights throughout their operations.

2.5  Individuals and Disability Rights and Duties 2.5.1  Individuals and Disability Rights Individuals are the addressees of disability rights: these have been conferred on people with disabilities to avoid discrimination and allow their full participation in society, along the lines of the social approach to disability. Such rights are currently codified in the CRPD.71 Essentially, CRPD Articles 10–23 and 29 embed civil and political rights, that is, ‘first-generation’ disability rights. Note, though, that classical first-generation human rights, which usually require the State to take a negative stance so as not to infringe upon them, outline a different relationship between the individual and the State. For instance, CRPD Article 10 establishes that every human being has an inherent right to life and the State must take the necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with other people. The State must thus take a specific proactive approach that is not required under the corresponding Article 6(1) of the ICCPR, which negatively provides that all human beings have an inherent right to life protected by law, which cannot be subjected to arbitrary deprivation. Furthermore, ICCPR Article 12 establishes the freedom of movement and of choosing residence within the territory of a State. Correspondingly, a State must not unduly restrict such freedom. Under the CRPD, this is outlined in Article 18, but also entails a set of additional claims. Thus, CRPD Article 19 establishes that the State must ‘take effective and appropriate measures to facilitate full enjoyment’ of the right to live independently and be included in the community.  This rule builds on the UN Norms on the Responsibilities of Transnational Corporations and Other Business Enterprises with Regard to Human Rights, which provide that, in addition to their primary responsibility to promote and protect human rights, under the duty to protect fundamental rights, States would have had an obligation to ensure that transnational corporations and other business enterprises respect human rights. 71  See Chap. 1 by Ottavio Quirico on sovereign entities and tripartite disability rights in this volume. 70

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CRPD Article 20 requires the State to facilitate personal mobility for a person with a disability and access to quality mobility aids and live assistance. It can thus be said that, because of the different situation of the disabled, first-generation human rights require a proactive approach by the State, which must positively fulfil such rights, rather than negatively respecting them. Despite these clear mandates, discrimination persists, often at the hand of individual state actors. For example, in Samoa in 2020 there was wide public condemnation of a police officer who told a wheelchair-bound man that he should not be issued a driver’s license due to his disability.72 The combination of this discriminatory act being done in public and the presence of social media to capture it and spread it amongst the small Pacific island community led to a formal government response and a firm statement in support of Samoa’s adherence to the CRPD, in so doing aligning the mandates of Article 6 with the Samoan value of va fealoa’i (‘respect with relationship’). The Ombudsman became involved, and the event helped to draw attention to individuals as the addressees of these rights as well as to the responsibility of those in government and the community in ensuring these rights are affirmed. Moreover, the act of aligning a traditional Samoan cultural value with an international human rights principle helped to further localise the disability human rights principles within local cultural norms and practices. CRPD Articles 24–28 and 30 outline economic, social and cultural rights, that is, ‘second-generation’ disability rights. Whilst rights under the ICESCR also require a proactive State approach, second-generation disability rights have a much more complex architecture. For instance, the right to health under ICESCR Article 12 establishes the claim of everyone to the ‘highest attainable standard of physical and mental health’ and medical services for all. CRPD Article 25 is much more articulate: it provides that persons with disabilities have the right to ‘the highest attainable standard of health without discrimination on the basis of disability’. States must provide people with disabilities the range, quality and standard of free or affordable health care and programmes that are given to other persons and exclude discrimination against people with disabilities as concerns health and life insurance. This provision is augmented by CRPD Article 26, on habilitation and rehabilitation, which compels States to take appropriate measures enabling people with disabilities to attain and maintain ‘maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.’ Building on the third-generation human rights to development and environmental protection, subsection (g) of the Preamble to the CRPD emphasises ‘the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development’. Furthermore, in the context of international cooperation, CRPD Article 32(1)(a) establishes that international development programmes must be ‘inclusive of and accessible to persons with disabilities’. These provisions thus build on the concept of ‘sustainable development established since the

  Ombudsman of Samoa (2020) https://www.samoagovt.ws/2020/04/respecting-the-rights-ofpersons-with-disabilities.

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Brundtland Report73 and establish the further concept of ‘inclusive sustainability’.74 The UN Human Rights Committee (‘HRCte’) has indeed explained that climate change negatively affects basic rights of persons with disabilities, such as the rights to life, health, sanitation, housing, decent work and development. This imposes upon States a duty to create ‘disability-inclusive climate policies’, ensuring the ‘full and effective participation in climate action at all levels.’75 Thus, for instance, States must ensure that people with disabilities and their representative organisations are consulted in the development of climate policies.76 States must also make sure that emergency information is made available to the disabled in accessible formats.77 Such policies must pay particular attention to the situation of developing countries.78 For example, recent scholarship has examined how in many developing countries, disability discourses are often meshed with anti- and de-colonisation discourses.79 South African scholars have tended to view disability rights through a concept known as ubuntu (‘shared collective humanness’). There is a sense that linking Indigenous concepts such as ubuntu, much as the Samoan concept of va fealoa’i, to the social lived experiences of individuals with disabilities, and then again to broader government and global policy objectives such as the Sustainable Development Goals (SDGs), is more likely to lead to the successful attention of disability rights goals. These provisions are still general, however, and it is yet to be seen how inclusiveness will develop in the context of sustainable development policies.

2.5.2  Individuals and Duties to Those with Disabilities Individuals are not only the primary addressees of disability rights, but also have obligations with respect to those with disabilities. Such obligations are fundamentally established at the State level via domestic legislation, whereby the CRPD provides a model and exercises a harmonising function. Depending on their societal status, individuals owe disability duties to different extents. For instance, an individual working for a corporation that employs persons with disabilities according to a quota-scheme has specific obligations to fulfil disability rights, according to their role, vis-à-vis the disabled. Among other duties, the employer has an obligation to adjust the workplace so as to provide reasonable accommodation; it also has an  World Commission on Environment and Development, Our Common Future, Brundtland Report (1987). 74  HRCte, Analytical Study (2020) at 8, para. 24. 75  Ibid. 76  Ibid., at 12, para. 41. 77  Ibid., at para. 43. 78  Ibid., at 13, para. 46. 79  Maria Berghs, ‘Practices and Discourses of Ubuntu: Implications for an African Model of Disability?’ (2017) 6 African Journal of Disability 292. 73

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obligation to outline an ad hoc working schedule, for example, via part-time arrangements.80 An ombudsman owes specific duties to protect the disabled from the infringement of their rights to non-discrimination. When an individual acts in their functional capacity for a corporation, the State, an NGO or an international organisation, their conduct triggers the responsibility of the organisation that they represent under both international and domestic law.81 For instance, in Aotearoa New Zealand, protections against discrimination on the grounds of disability are provided in the Human Rights Act 1993 (NZ). Section 22 of that Act provides that ‘[i]t shall be unlawful for an employer, or any person acting or purporting to act on behalf of an employer’ to ‘refuse or omit to employ’ (22(a)) or ‘to offer or afford the applicant or the employee less favourable terms of employment, conditions of work, superannuation or other fringe benefits, and opportunities for training, promotion, and transfer’ (22(b)) or ‘to terminate the employment of the employee, or subject the employee to any detriment’ (22(c)) or otherwise force the employee to resign (22(d)) on the basis of disability. This is similar to Section 15 of the Disability Discrimination Act 1992 (Cth), which provides that ‘[i]t is unlawful for an employer or a person acting or purporting to act on behalf of an employer to discriminate against a person on the ground of the other person’s disability: (a) in the arrangements made for the purpose of determining who should be offered employment’ or ‘(c) in the terms or conditions on which employment is offered.’ Section 22 of the same Act (Education) establishes that ‘[i]t is unlawful for an educational authority to discriminate against a person on the ground of the person’s disability: (a) by refusing or failing to accept the person’s application for admission as a student; or (b) in the terms or conditions on which it is prepared to admit the person as a student.’ Section 29 (Administration of Commonwealth Laws and Programs) establishes that it is unlawful for a person performing functions under a Commonwealth law or for the purposes of a Commonwealth program, ‘to discriminate against another person on the ground of the other person’s disability’ in the performance of Commonwealth functions. In both Aotearoa New Zealand and Australia, as in other jurisdictions, enforcement mechanisms for misconduct vary from administrative remedies, such as Ombudsmen, to domestic courts and administrative remedial mechanisms. For instance, prior to commencing judicial procedures, a person who is discriminated because of disability can bring a complaint with the Human Rights Commission, which will investigate the matter and seek to conciliate it. The Disability Discrimination Act 1992 (Cth) also establishes under Section 67 (Functions of the Australian Human Rights Commission) that the Commission, inter alia, assesses whether enactments are inconsistent with the objects of the Act, reports to the Minister on the results of any such examination, and intervenes in proceedings that involve issues of discrimination on the ground of disability. Similar provision is

 See further the chapter on the right to work in this volume.  See, for instance, Article 4 of the 2001 ILC’s Draft Articles on the Responsibility of States for Internationally Wrongful Acts, UN Doc. A/56/10.

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made in Section 5 of the New Zealand Human Rights Act (NZ) (5(1)(e), which establishes specific employment-related protections for people with disabilities). Finally, unlike corporations, which are wholly accountable under domestic law, thanks to the Rome Statute of the ICC adjudication at the international level for gross human rights violations against people with disabilities cannot be excluded. Serious human rights violations, such as torture and biological experiments committed against persons with disabilities, which cannot be excluded in situations of war, are within the jurisdiction of the Court. However, the jurisdiction of the ICC is extrema ratio, as it complements primary adjudication via domestic courts. Furthermore, the competence of the ICC is limited to crimes committed on the territory of a State party or by nationals of a State Party to the Rome Statute of the ICC (Article 12) and it is only activated when a State is ‘unable’ or ‘unwilling’ to prosecute (Article 17). In this regard, the International Committee of the Red Cross has recently underscored that after World War II Nazi doctors and administrators were prosecuted for crimes committed against vulnerable civilians, including people with disabilities, in breach of the fundamental principles of the law of peace and war.82 Similarly, crimes against vulnerable groups and those with disabilities emerge from the jurisprudence of ad hoc international criminal tribunals.83 Whilst crimes against humanity must be committed on a systematic scale to be subjected to the jurisdiction of the ICC (Article 8), war crimes do not need to fulfil such a requirement (Article 7).

2.6  Conclusion The tripartite disability rights framework, which was initially established for States, necessarily undergoes adjustments when it is applied to non-State entities. This is particularly due to the fact that States, and, to a certain extent, international organisations, are the primary addressees of the obligation to protect human rights, exactly because this is linked to the exercise of sovereign power. NGOs include a variety of different subjects. NGOs that are specialised in the area of human rights are active both internationally and nationally. They have played an important role in the negotiations that led to the adoption of the CRPD and have a critical function in fulfilling disability rights. For instance, IDA brings together a myriad of organisations around the world and constantly interacts with the HRCte for the purpose of advocating disability rights. Other NGOs have a regional scope of action, as in the case of the EDF and PDF. All of these organisations take into account the concept of ‘inclusive sustainability’ as a primary purpose of their action. At the national level, NGOs are essential to advocate disability rights, particularly  William Pons, An Argument for the Prosecution of Crimes against Persons with Disabilities, 11 May 2017, https://intercrossblog.icrc.org/blog/an-argument-for-the-prosecution-of-crimesagainst-persons-with-disabilities. 83  Ibid. 82

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in developing countries and rural areas. For those NGOs that are not specialised in the area of disability, it is important to become acquainted with the disability framework, otherwise, they are at risk of breaching disability rights and hampering their implementation in areas such as education, employment and health. Within the tripartite human rights categorisation, corporations usually have an obligation to respect human rights, as emphasised by the Ruggie Review framework. However, disability, or ‘different ability’, entails a differential situation that requires positive measures to exclude discrimination. Therefore, the obligation to ‘respect’ human rights must be interpreted extensively and in a teleological way, rather than literally, so as to encompass a duty to fulfil disability rights. As the key engines of the economy, businesses particularly have a duty to make it possible for the disabled to enjoy labour rights in the context of the employer-employee relationship. Individuals are, first and foremost, the addressees of disability rights. The CRPD, which codifies the evolution of legislation in the area, seeks to establish a set of claims in favour of the disabled and eliminate discrimination against them. Persons with disabilities thus benefit from a set of rights that the State and other legal persons must proactively fulfil, spanning the rights to life, education, work and participation. In this regard, the tripartite categorisation, including first-, second- and third-generation human rights applies; however, even civil and political rights require a positive approach, particularly by the State, to fulfil such rights. Economic, social and cultural disability rights are much more complex than classical second-­ generation human rights. The third-generation disability right to sustainable development entails a shift from the individual to a collective dimension, but it remains to be seen how this will unfold. Individuals are also the addressees of duties vis-à-­ vis persons with disabilities, which particularly depend on their role and function in society. Employers, for instance, have a duty not to discriminate against the disabled in recruitment processes and public administrators cannot implement discriminatory policies. Breaches of disability rights are mostly adjudicated at the domestic level, but there are cases of extreme violations, such as biological experiments, which have triggered criminal adjudication at the supranational level.

References84 Documents Commonwealth of Australia. 2009. National Human Rights Consultation Report. EDF. 2020. Sustainable Development Goals. https://www.edf-­feph.org/sustainable-­developmentgoals-­sdgs. EDF. 2020. Welcome to EDF. https://www.edf-­feph.org.

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French, P. 2008. Human Rights Indicators for People with Disability: A Resource for Disability Activists and Policy Makers. HRCte. 2020. Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc. A/HRC/44/30. IDA. 2020. Who We Are. https://www.internationaldisabilityalliance.org/about. ILC. 2001. Draft Articles on the Responsibility of States for Internationally Wrongful Acts, UN Doc. A/56/10. ILO. 1998. Declaration on Fundamental Principles and Rights at Work. ILO. 2017. Guide for Business on the Rights of Persons with Disabilities. International Council for Human Rights Policy. 2009. Human Rights Organisations: Rights and Responsibilities. International Covenant on Civil and Political Rights. Opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976. International Covenant on Economic, Social and Cultural Rights. Opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. Microsoft. 2020. Global Diversity & Inclusion Report. https://aka.ms/2020DIReport. Ombudsman of Samoa. 2020. Respecting the Rights of Persons with Disabilities. https://www. samoagovt.ws/2020/04/respecting-­the-­rights-­of-­persons-­with-­disabilities. PDF. 2020. What We Do: Women. http://www.pacificdisability.org/What-­We-­Do/Women.aspx. Ruggie, J. 2008. Protect, Respect and Remedy: A Framework for Business and Human Rights, UN Doc. A/HRC/8/5. UN Enable. 2021. Factsheet on Persons with Disabilities, https://www.un.org/development/desa/ disabilities/resources/factsheet-­on-­persons-­with-­disabilities.html. UN GA. 1948. Universal Declaration of Human Rights. Res. 217/A. UN GA. 1993. Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Res. 48/96. UN GA. 2001. Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Res. 56/168. Vienna Convention on the Law of Treaties between States and International Organizations or between International Organizations. Opened for signature 21 March 1986, A/CONF.129/15. Vienna Convention on the Law of Treaties. Opened for signature 23 May 1969, 1155 UNTS 331, entered into force 27 January 1980. World Commission on Environment and Development. 1987. Our Common Future, Brundtland Report.

Bibliography Acharya, S. (2017). Disability law implementation: The role of NGOs and INGOs in Nepal. NJA Law Joumal, 11, 253. Aichele, V. (2018). Article 33: National implementation and monitoring. In I.  Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN convention on the rights of persons with disabilities: A commentary (p. 978). Oxford University Press. Arduin, S. (2019). Taking meta-regulation to the United Nations human rights treaty regime: The case of the Convention on the Rights of Persons with Disabilities. Law & Policy, 41(4), 411. Banks, L. & Polack, S. 2014. The economic costs of exclusion and gains of inclusion of people with disabilities. Bantekas, I., & Oette, L. (2013). International human rights: Law and practice. Cambridge University Press. Bantekas, I., Stein, M. A., & Anastasiou, D. (Eds.). (2018). The UN Convention on the Rights of Persons with Disabilities: A commentary. Oxford University Press.

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Berghs, M. (2017). Practices and discourses of Ubuntu: Implications for an African model of disability? African Journal of Disability, 6, 292. Brodey, D. (2019). How business leaders are introducing disability rights as a CSR issue. Forbes. Clough, J. (2005). Not so innocents abroad: Corporate criminal liability for human rights abuses. Australian Journal of Human Rights, 11. De Beco, G., & Hoefmans, A. (2013). National structures for the implementation and monitoring of the UN Convention on the Rights of Persons with Disabilities. In G. De Beco (Ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities (pp. 9–Brill). Leiden. De Búrca, G. (2017). Human rights experimentalism. American Journal of International Law, 111(2), 277. Edwards, G. (2010). Assessing the effectiveness of human rights non-governmental organizations (NGOs) from the birth of the United Nations to the 21st century: Ten attributes of highly successful human rights NGOs. Michigan State Journal of International Law, 18(2), 165. Fadgen, T. (2020). Mental health public policy in global context: A comparative study of policy transfer in Samoa and Tonga. Springer. Fröhlich, C. (2012). Civil society and the state intertwined: The case of disability NGOs in Russia. East European Politics, 28(4), 371. Khan, N., Korac-Kakabadse, N., Skouloudis, A., & Dimopoulos, A. (2019). Diversity in the workplace: An overview of disability employment disclosures among UK firms. Corporate Social Responsibility and Environmental Management, 26, 170. Kirakosyan, L. (2016). Promoting disability rights for a stronger democracy in Brazil: The role of NGOs. Non-profit and Voluntary Sector Quarterly, 45(1), 114. Kulkarni, M., & Lengnick-Hall, M. (2014). Obstacles to success in the workplace for people with disabilities: A review and research agenda. Human Resource Development Review, 13(2), 158. Lord, J. E. (2004). Ngo participation in human rights law and process: Latest developments in the effort to develop an international treaty on the rights of people with disabilities. ILSA Journal of International & Comparative Law, 10, 311. Miretski, P. P., & Bachmann, S. D. (2012). The UN ‘norms on the responsibility of transnational corporations and other business enterprises with regard to human rights’: A requiem. Deakin LR, 17, 5. Niewohner, J., Pierson, S., & Meyers, S. J. (2020). ‘Leave no one behind’? The exclusion of persons with disabilities by development NGOs. Disability and Society, 35(7), 1171. Pons, W. (2017). An argument for the prosecution of crimes against persons with disabilities. https://intercrossblog.icrc.org/blog/an-­a rgument-­f or-­t he-­p rosecution-­o f-­c rimes-­a gainst-­ persons-­with-­disabilities. Raley, M. (2016). The drafting of article 33 of the convention on the rights of persons with disabilities: The creation of a novel mechanism. International Journal of Human Rights, 20(1), 138. Ruggie, J. (2011). Guiding principles on business and human rights: Implementing the United Nations ‘protect, respect and remedy’ framework, UN Doc. A/HRC/17/31. Sabatello, M., & Schulze, M. (Eds.). (2013). Human rights and disability advocacy. University of Pennsylvania Press. Vornholt, K., Villotti, P., Muschalla, B., Bauer, J., Colella, A., Zijlstra, F., & Corbière, M. (2018). Disability and employment: Overview and highlights. European Journal of Work and Organizational Psychology, 27(1), 40.

Part II

Evolving Regulatory Areas

Chapter 3

Right to Life v. Right to Health? Disability and Selective Abortion Ottavio Quirico, Katarzyna Kwapisz Williams, John R. Morss, and Xiang Gao

Contents 3.1  I ntroduction 3.2  ‘ Pro-life’ v. ‘Pro-choice’ 3.2.1  The Question of the Beginning of Life: Comparative Dilemmas 3.2.2  Disability-Based Abortion 3.2.3  Case Study: The Situation in Poland 3.3  The Convention on the Rights of Persons with Disabilities and the ‘Pro-life’ v. ‘Pro-choice’ Debate 3.4  The Stance of International Human Rights Bodies and Representative Organisations 3.4.1  International Institutions 3.4.2  The View of Representative Organisations 3.5  Conclusion References

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Abstract  Should an impaired foetus be treated on the same footing as a non-­ impaired one? In light of the strong and divergent views on abortion across different religious and ideological perspectives, the right to life of persons with disabilities O. Quirico (*) Law School, University of New England, Sydney, Australia Centre for European Studies, Australian National University, Canberra, Australia Law Department, European University Institute, Firenze, Italy e-mail: [email protected]; [email protected]; [email protected] K. K. Williams Centre for European Studies, Australian National University, Canberra, Australia e-mail: [email protected] J. R. Morss Law School, Deakin University, Melbourne, VIC, Australia e-mail: [email protected] X. Gao School of Humanities, Arts, and Social Sciences, University of New England, Sydney, NSW, Australia e-mail: [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_3

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generates tension between the ‘pro-life’ and ‘pro-choice’ camps. This conflict is reflected in tensions between Articles 10 (Right to life) and 25 (Health) of the Convention on the Rights of Persons with Disabilities and the debate cuts across the disability rights and reproductive rights movements. Arguably, even assuming that life and personhood begin after birth (or at some earlier prenatal time or state) raises profound ethical and legal dilemmas that make it difficult to achieve harmonisation throughout different countries. Keywords  Foetus · Disability (different ability) · Right to life · Right to health · Pro-life · Pro-choice

3.1  Introduction This chapter considers an important and sensitive issue concerning the rights of persons with disabilities, rectius, different abilities, notably, the debate on abortion in relation to those pregnancies in which the unborn child is anticipated to have a disability as she or he grows up. The aim of this chapter is to clarify our understanding of the right to life of the unborn child in these circumstances. To what extent, if at all, does the right to life have to be treated differently in this situation in order to avoid discrimination? Article 6 of the International Covenant on Civil and Political Rights (‘ICCPR’)1 provides that ‘[e]very human being has the inherent right to life’, which ‘shall be protected by law’, so that no one shall be arbitrarily deprived of his life.’ According to Article 10 of the United Nations (‘UN’) Convention on the Rights of Persons with Disabilities (‘CRPD’),2 ‘States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.’ In the case of abortion, different countries adopt different practices concerning the right to life of persons with disabilities. Some are quite liberal (UK and Sweden have the most liberal abortion law in Europe), some allow abortion in the case of a serious health risk to the mother, some restrict access to abortion, while others prohibit it entirely (for instance, Malta, Andorra, San Marino, Vatican, El Salvador and Chile, among others). Some countries permit abortion for what are defined as health purposes, others prohibit abortion even on such grounds. ‘Health purposes’ may sometimes be understood to refer to the health of the mother only, although this concept again encompasses a range of definitions in both medical and policy terms. Given the strong and divergent views on abortion in the community and across different religious and ideological perspectives, the right to life of persons with disabilities inevitably generates tension between the ‘pro-life’ and ‘pro-choice’

 Opened for signature 16 December 1966, 991 UNTS 171, in force 23 March 1976.  Opened for signature 13 December 2006, 2515 UNTS 3, in force 3 May 2008.

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camps. This conflict is to some extent reflected in tensions between Articles 10 (Right to life) and 25 (Health) of the CRPD. The debate cuts across the disability rights and reproductive rights movements. The policy and legal sanction of abortion on the basis of anticipated disability is in many ways deeply conditioned by a narrow medical approach. Yet this approach is clearly inadequate and the fact that it is outdated is shown by the text of the CRPD itself, which emerged from, and contributes to, the consolidation of a social approach to disability.3 In view of the above, the contribution first outlines the evolution of the debate on the pro-life v. pro-choice debate in national legal systems. Second, the chapter explores the evolution of the debate in the travaux préparatoires for the CRPD. Third, the chapter explores the stance of key international institutions on this issue, particularly the Human Rights Committee (‘HRCte’) and the Committee on the Rights of Persons with Disabilities (‘CteRPD’).

3.2  ‘Pro-life’ v. ‘Pro-choice’ 3.2.1  T  he Question of the Beginning of Life: Comparative Dilemmas Different States take different approaches to disability and abortion.4 The approach to the question of abortion, including disability-based abortion, is influenced not only by medical issues, but also by differences in worldviews, religious perspectives, moral approaches, traditions and cultures. Initially, restrictions on abortion aimed to grant, first and foremost, protection, because abortion puts the life of a woman at risk.5 Nowadays, abortion has become safer: research conducted by the World Health Organisation (‘WHO’) shows that broader legal grounds for abortion reduce the possibility of unsafe abortion.6 Therefore, it is not medical grounds, but rather moral grounds which are the main focus of the debate between the ‘pro-life’ and ‘pro-choice’ approaches to abortion and disability. Some countries still criminalise abortion. In 2015, Sierra Leone, formerly a British colony, sought to revoke the Offences against the Person Act 1861 by passage of the Safe Abortion Act 2015. However, following protests by religious leaders, President Ernest Bai Koroma declined to sign the Act into law. Sierra Leone is 3  Women Enabled International, Abortion and Disability: Towards an Intersectional Human Rights-­ Based Approach (2020) at 27. 4  For an overview, see Marge Berer, ‘Abortion Law and Policy around the World: In Search of Decriminalization’ (2017) Health Hum Rights 13; Louise Finer and Johanna B Fine, ‘Abortion Law around the World: Progress and Pushback’ (2013) 103(4) American Journal of Public Health 585. 5  See Marge Berer, Abortion Law and Policy around the World (2017). 6  World Health Organization, Primary Health Care: Now More than Ever, World Health Report (2008) at 65, http://www.who.int/whr/2008/whr08_en.pdf.

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one of twenty-six countries that prohibit abortion altogether, including when the woman’s life or health is at risk. Thirty-nine countries allow abortion when the woman’s life is at risk, and another fifty-six on the basis of health or therapeutic grounds – this includes twenty-five which ‘explicitly permit abortion to preserve the woman’s mental health’.7 Laws are generally interpreted liberally to permit abortion under a broad range of circumstances. Countries often consider a woman’s actual or reasonably foreseeable environment and her social or economic circumstances in determining the potential impact of pregnancy and childbearing. Some allow abortion under broad social and economic circumstances, or upon request. Abortion upon request is permitted in around 65 per cent of developed countries and 14 per cent of developing countries.8 For example, since 1965, Cuba has allowed abortion upon request via the national health system and in 1987 the Criminal Code established that abortion is only a crime when practiced for profit, outside health institutions, by non-medical staff or against the will of a woman.9 Canada has allowed unrestricted abortion since 1988, when abortion was decriminalised and publicly funded as a medical procedure under the Canada Health Act 1984.10 Prior to that, inducing abortion was a crime under Section 251 of the Criminal Code of Canada, with penalties for operating doctors of anywhere up to life imprisonment and two years for participating women. There are gestational age limits which vary in different countries with the most common being twelve weeks. In several countries, abortion on disability grounds, notably serious foetal impairment, is allowed, besides situations that pose a risk to a woman’s life or physical or mental health. The regulatory framework is often unclear. In Tanzania, for example, it is uncertain whether the 1981 revision of the Penal Code allows abortion to preserve physical or mental health and life.11 In Kenya and Uganda, constitutional and criminal regulation does not clarify whether abortion is lawful; in 2012 and 2015, these countries adopted guidelines on the prevention of unsafe abortion to shed light on the situation, which were nonetheless withdrawn respectively in 2012 and 2016, owing to religious and political resistance.12 Since the 1990s, there has been a growing and accelerating global trend toward the liberalisation of abortion laws. Many

7  Centre for Reproductive Rights, The World Abortion Laws, https://maps.reproductiverights.org/ worldabortionlaws. 8  United Nations Population Division, Updated Study on Abortion Policies, 14 June 2002, POP/830. 9  Ivet Gonzalez, Abortion Rights in Cuba Face New Challenges, Havana Times, 4 September 2017; International Campaign for Women’s Right to Safe Abortion, Cuba – Abortion Has Been Safe and Free in Cuba for Over Half a Century, 19 September 2017. 10  Linda Long, Abortion in Canada, The Canadian Encyclopaedia (2020) https://www.thecanadianencyclopedia.ca/en/article/abortion. 11  Richard Sambaiga, Haldis Haukanes, Karen Marie Moland and Astrid Blystad, ‘Health, Life and Rights: A Discourse Analysis of a Hybrid Abortion Regime in Tanzania’ (2019) 18 International Journal for Equity in Health 1. 12  Amanda Cleeve et al., ‘Time to Act – Comprehensive Abortion Care in East Africa’ (2016) 4(9) Lancet Global Health e601.

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countries have expanded the grounds under which abortion is legal, with eighteen overturning complete bans on abortion and allowing abortion under specific circumstances.13 However, restrictive practices persist in various parts of the world, with new restrictions being introduced in spite of the growing global commitment to liberalisation of abortion laws. For instance, while Latin-American States have progressively liberalised abortion, Brazil has adopted regulation restricting the use of medicaments with abortive effects, particularly misoprostol, which is available on the market for common use and is employed for self-induced abortion. Poland has also recently tightened regulation on abortions: the Constitutional Court held a 1993 law allowing abortion in cases of severe and irreversible foetal defects to be unconstitutional, with effect from 28 January 2021.14 Within the framework of both the prohibition or permission of abortion and its criminalisation or decriminalisation, the question of abortion on disability grounds raises issues of constitutionality. Notably, these concern competing arguments in favour of the right of the foetus to be brought into life, that is, personhood, versus the right of the mother to abortion based on her interests and choice.15 In the case of Poland, the Constitutional Court justified its pro-life decision on the grounds that ‘an unborn child is a human being’ and therefore deserves protection under the Konstytucja Rzeczypospolitej Polskiej (‘Polish Constitution’), which ensures ‘the legal protection of the life of every human being’ (Article 38).16 The fundamental question at issue is when exactly life commences: is it prior to or after birth? Can a foetus be considered ‘life’? Therefore, is there discrimination when an impaired foetus is suppressed?17 The answer to these questions is not clear. In Roe v. Wade, the United States (‘US’) Supreme Court did not attempt to resolve ‘the difficult question of when life begins’, on which there is no consensus in medicine, philosophy, or theology. Instead, the Court based its judgment on the fact that, historically, under English and American common law and statutes, ‘the unborn have never been recognized ... as persons in the whole sense’, such that a foetus is not legally entitled to the right to life under the Fourteenth Amendment to the US Constitution.18 The Court’s 7-2 decision held that the Due Process Clause of the Fourteenth Amendment to the US Constitution establishes a ‘right to privacy’ that protects the interest of a pregnant woman to choose whether or not to abort, at the

13  Centre for Reproductive Rights, Accelerating Progress: Liberalization of Abortion Laws since ICPD, https://reproductiverights.org/sites/default/files/documents/World-Abortion-Map-­ AcceleratingProgress.pdf. 14  Polsh Constitutional Court, Ruling in Case K/120, 22 October 2020. 15  Tsehai Wada, ‘Abortion law in Ethiopia: A Comparative Perspective’ (2010) 2(1) Mizan Law Review 1. 16  Polish Constitutional Court, Ruling in Case K/120 (2020). 17  Lynn Gillam, ‘Prenatal Diagnosis and Discrimination against the Disabled’ (1999) 25(2) Journal of Medical Ethics 163. 18  Roe v. Wade, 410 US 113 (1973).

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same time considering that this right must be balanced against the government interest in protecting both a woman’s health and prenatal life.19 Since there is no consensus on when life begins, this has become the central issue in disagreements over abortion. Constitutions across the world for the most part do not provide a clear definition, so that other regulation and court decisions can specify this issue. For instance, in 1983, Ireland passed the Eighth Amendment of the Constitution Act, which recognised the equal right to life of the pregnant woman and the unborn, restricting permissive legislation and judicial interpretation to cases where the life of a pregnant woman was at risk. However, the Thirty-Sixth Amendment of the Constitution Act 2018 repealed this, allowing the Parliament to pass permissive legislation, and thus shifting the beginning of life to the natal phase. The Polish Constitution does not define when life begins, but the Constitutional Court clarified in a judgement of 28 May 1997 that ‘every human being is eligible for the protection of his/her life from the moment of conception … including the prenatal stage.’20 This position was upheld in a judgement of 2004: ‘[a]ll possible doubts as to the protection of human life should be resolved in favour of this [life] protection (in dubio pro vita humana).’21 An analogy with religious interpretations can be seen here. While a constitutional democracy model is based on pluralism, the law cannot be axiologically neutral, and a system of values is both part of, and contributes to, legal traditions and heritage. As such, the legal determination may be more strongly informed by religious and national identity, as in Poland, or be more consonant with an individual conception of fundamental rights.22 Thus, in Poland and other Catholic countries, The Catechism of the Catholic Church (1992) is the exposition of both religious doctrine and accepted human morality. Points 2270–2275 of the Catechism directly concern termination of pregnancy and state that human life begins at, and is protected from, conception; thus, abortion is unquestionably immoral. Other major religions similarly assume the beginning of human life at conception.23 Among documents of broader application is the UN Convention on the Rights of the Child (‘CRC’),24 an international human rights treaty that deals with child-­ specific needs and rights. As of 3 February 2021, 196 countries are parties to the CRC (some with stated reservations or interpretations).25 The Preamble to the Convention restates what was embedded in the 1959 UN Declaration of the Rights of the Child: ‘the child, by reason of his physical and mental immaturity, needs  Id.  Polish Constitutional Court, Decision in Case K 26/96, 28 May 1997. 21  Id., Decision in Case K 14/03, 7 January 2004. 22  Stanisław Wójcik, ‘Religia chrześcijańska, prawo, państwo’ (2020) 2(250) Zeszyty Naukowe KUL 64,. 23   William Neaves, ‘The Status of the Human Embryo in Various Religions’ (2017) 144 Development 2541. 24  Opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. 25  UN Treaty Collection, Convention on the Rights of the Child, https://treaties.un.org/Pages/ ViewDetails.aspx?src=TREATY&mtdsg_no=IV-11&chapter=4&clang=_en. 19 20

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special safeguards and care, including appropriate legal protection, before as well as after birth’.26 The Convention does not define clearly the point at which a child’s life begins, but the provision on legal protection before birth is a sufficient condition to recognise that a child’s life is subject to protection from the moment of conception (invoking the principle in dubio pro vita humana).27 Irrespective of pro-life arguments, it is generally agreed that the ‘beginning of human life’ is rather arbitrary. Pro-choice supporters often refer to a scholarly knowledge that the majority of embryos are incapable of developing and are removed spontaneously by a woman’s body in the first weeks after conception,28 and thus cannot be treated as children. Various social experiments show that the majority of people do not treat life equally and are able to identify differently what or whose life is more important to them. In a legal context, the European Commission on Human Rights (‘EComHR’) and European Court of Human Rights (‘ECtHR’) have reached a common position, although each EU Member State regulates legal issues related to abortion independently. Article 2 of the European Convention on Human Rights (‘ECHR’),29 states that ‘[e]veryone’s right to life shall be protected by law.’ However, the EComHR and ECtHR have refused to extend absolute protection of the right to life to the foetus. The first such judgement was made in X v. the United Kingdom,30 where the Commission ruled out the interpretation that ECHR Article 2 grants an absolute right to life to the foetus, because ‘the “life” of the foetus is intimately connected with, and cannot be regarded in isolation from, the life of the pregnant woman.’31 and ‘the “unborn life” of the foetus’ should not ‘be regarded as being of a higher value than the life of the pregnant woman’.32 Therefore, the general usage of the term ‘everyone’ (‘toute personne’) in the ECHR and the context in which this term is employed in Article 2 ‘tend to support the view that it does not include the unborn.’33 In 1989, in Tysiac v. Poland the ECtHR considered that, by preventing a woman from performing abortion, ‘the [Polish] authorities failed to comply with their positive obligations to secure to the applicant the  UN GA, Res 1386 (XIV), 20 November 1959, Preamble.  The two most cited philosophical texts on the subject of abortion are a thought experiment with violinist Judith Jarvis Thomson, part of the work ‘A Defense of Abortion, https://spot.colorado. edu/~heathwoo/Phil160,Fall02/thomson.htm, and ‘On the Moral and Legal Status of Abortion’ by Mary Anne Warren, http://www.douglasficek.com/teaching/phil-2222/warren.pdf. 28  Scientists estimate that, within 5–6 days after conception, about 1/3–1/2 of embryos die (Gavin E. Jarvis, ‘Early Embryo Mortality in Natural Human Reproduction: What the Data Say’ (2016) 5 F1000Res 2765). 29  Convention for the Protection of Human Rights and Fundamental Freedoms, opened for signature 4 November 1950, entered into force 3 September 1953. 30  X v. the United Kingdom, EComHR, Appl No 8416/79, Admissibility Decision of 13 May 1980, at para 19. 31  Douwe Korff, The Right to Life. A Guide to the Implementation of Article 2 of the European Convention on Human Rights, Directorate General of Human Rights, Council of Europe (2006) at 10. 32  X v. the United Kingdom (1980) at para. 19. 33  Korff, The Right to Life (2006) at 10. 26 27

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effective respect for her [the applicant’s] private life’.34 The issue remains controversial, however, as various considerations of ECHR Article 2 show. Korff concludes that, while unborn life is given a measure of protection under the ECHR, much is left to the discretion of the States.35

3.2.2  Disability-Based Abortion Disability-based abortion debates bring additional complexities, so much so that some authors point to the paradox of disability in abortion debates.36 On the one hand, it is argued that people with disabilities, that is, an important part of the population, are content with their life and do not express the opinion that they would prefer not to be born. Therefore, abortion on disability grounds suppresses the individual choice of the person with a disability: considering disability a ground for abortion implies that the lives of disabled people are somehow less worthy. In terms of moral philosophy, it might be argued that a living person with a disability must be thought of as having a preference (an interest) for being alive as compared with the counterfactual scenario of having been terminated in utero. This argument would simply represent the application of a general claim as concerns the interests of any living person. Thought of in this way, as the shuttering of a future life, albeit one characterised by some form of disability, abortion on disability grounds might be said to suppress individual choice. If so, future predicted disability as a ground for abortion would seem to imply a value judgment that the life of a person with a disability is less worthwhile than a non-disabled one. This would, in turn, suggest a form of eugenics.37 Aborting impaired foetuses would revive the idea of ‘proper people’ and New Medicine, placing emphasis on preventive care, aiming at eliminating sickness and disability, such that those who do not meet the standards of a healthy and able body are deemed to have lives ‘not worth living’ and must therefore be programmatically eliminated from society. It certainly needs to be given careful consideration that the abortion of foetuses defined as ‘impaired’ perpetuates existing discrimination. It seems unavoidable to draw some connection, however qualified, between selective abortion, for example, based on genetic analysis, and societal discrimination against people with disabilities.38 On the other hand, the argument promoted by both anti-abortion and disability activists that the termination of pregnancy due to foetal impairment is an implicit  Tysiąc v. Poland, ECtHR, Case n. 5410/03, Judgment of 20 March 2007, at para. 135.  Korff, The Right to Life (2006) at 16. 36  Sujatha Jesudason and Julia Epstein, ‘The Paradox of Disability in Abortion Debates: Bringing the Pro-Choice and Disability Rights Communities Together’ (2011) 84 Contraception 541. 37  Nils Holtug, ‘Against Human Gene Therapy’ (1997) 6 Cambridge Quarterly of Healthcare Ethics 159. 38  Gillam, ‘Prenatal Diagnosis’ (2020) at 164. 34 35

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statement that life with disability is worthless (as mentioned above) often centres on the ‘“healthy disabled” who [do] not need constant medical attention’ and can live autonomous lives. Such an argument leads to the equating of abortion for non-lethal foetal impairment with ‘eugenic abortion’.39 This situates supporters of disability rights on the same side as anti-choice and pro-life supporters (usually associated with conservative political positions).40 It is also worth noting that in societies where technology, law and medical infrastructure allow termination to be offered on the basis of prenatal diagnosis, parents who choose not to terminate pregnancy after positive prenatal diagnosis, or who decline to use prenatal diagnosis at all, might themselves face censure. At least assuming that disability does not justify abortion as a differential treatment, they might be considered by some members of their community to be irresponsible and there might even be an increase in discrimination against the disabled in such situations. For instance, the State may view with less favour the provision of specific educational and vocational programmes for children with disabilities born despite pre-natal diagnosis or without that screening having been carried out.41 In practice, most women who experience a severe anomaly during pregnancy decide to terminate the foetus42 and are often compelled to travel and abort abroad if their State of residence prohibits abortion. This is shown by the case of Sherri Finkbine, a woman living in Arizona, who, during pregnancy with her fifth child, discovered that the foetus might have had serious deformity, following her ingestion of sleeping pills that contained Thalidomide. At that time, Arizona only allowed abortion in case of danger to a woman’s life, which prompted Finkbine to travel and abort legally in Sweden.43 Studies of termination decisions after prenatal diagnosis demonstrate that, for a diagnosis of anencephaly, spina bifida or thalassaemia, between 73 and 100 per cent of women opt for termination, and most studies report 100 per cent. The rate of abortion for chromosome abnormality ranges from 38 per cent to 79 per cent, while Down’s syndrome leads to abortion in 81 per cent of

 Ilana Löw, ‘Abortion for Fetal Anomaly: How to Speak about a Difficult Topic’ (2020) 36 Cadernos de Saúde Pública, DOI: 10.1590/0102-311x00188618, interestingly noting:

39

[T]he woman who wants a “perfect child” and is willing to terminate a pregnancy for a minor fetal anomaly seems to exist mainly in bioethicists’ theoretical debates. Empirical studies indicate that women who ask a permission to terminate a pregnancy for a fetal indication nearly always have very serious arguments to support their plea. 40  Löw ‘Abortion for Fetal Anomaly’ (2020). 41  Ibid, at 165. 42  Caroline Mansfield et al, ‘Termination Rates after Prenatal Diagnosis of Down Syndrome, Spina Bifida, Anencephaly, and Turner and Klinefelter Syndromes: A Systematic Literature Review’ (1999) 19 Prenatal Diagnosis 808, at 811; Dov Fox and Christopher L Griffin J, ‘Disability-­ Selective Abortion and the Americans with Disabilities Act’ (2009) 3 Utah Law Review 846, at 873 ff. 43  ‘The Finkbine Case’, Chicago Tribune, 19 June 1992.

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cases.44 Prenatal diagnosis provides an advantage of affording increased reproductive autonomy to this end. Although opting for abortion is not an easy choice,45 mothers decide on disability-­ based abortion for different reasons, such as the type of life that the future child might have, concerning, for example, life expectancy, pain and suffering, hospitalisation and prospects for social interaction and education. Concerns also address the life of the parents themselves, their careers, and the impact on other children in the family.46 Returning to the hypothetical comparisons entertained by moral philosophy, abortion in the case of foetal impairment may be said to be a matter of choice by the parent, in the sense that it is considered preferable to potentially give birth to a ‘healthy’ child in the future than to give birth to a disabled child now. In this case, abortion would not only be a right, but might also be said to be a moral obligation.47 It has been argued in opposition that persons who are severely ill, for instance, people with terminal cancer, have a low quality life, but this does not in itself justify discriminatory treatment and the proactive termination of their lives.48 However, aside from the fact that certain countries allow euthanasia in cases of terminal illness,49 the situation can be compared with the termination of an impaired foetus only by assuming that a foetus has full personality and is therefore full ‘life’, which is a highly contested and debated proposition.50 Whilst not being possibly discriminatory vis-à-vis the disabled foetus, however, aborting an impaired foetus may be considered highly discriminatory against those already born with disabilities, since the underpinning idea is that the life of a disabled person is not worth living: abortion on disability grounds intrinsically entails the risk of discrimination. Partly as a consequence of the controversial and unresolved status of questions such as the legal beginning of life, the common law, civil law and Islamic law approach them differently.51 Abortion for reasons of foetal anomaly or impairment is currently allowed in around 39 per cent of jurisdictions worldwide: prenatal testing for foetal anomalies has largely become a standard practice across developed countries.52 In the UK, abortion was criminalised under sections 58 and 59 of the Offences against the Person Act 1861; subsequently, the Abortion Act 1967  Mansfield et al., ‘Termination Rates’ (1999) 808; Fox and Griffin, ‘Disability-selective Abortion’ (2009) 846. 45  See Marianne Kjelsvik, ‘Women’s Experiences When Unsure about Whether or Not to Have an Abortion in the First Trimester’ (2018) 39(4) Health Care For Women International 784. 46  Lynn Gillam, ‘Prenatal Diagnosis’ (1999) at 168. 47  Ibid, at 168–169. 48  Ibid, at 169. 49  Nicola Davis, ‘Euthanasia and Assisted Dying Rates Are Soaring. But Where Are They Legal?’, The Guardian, 15 July 2019. 50  ‘Treating a Foetus as a Person’, The New York Times, 5 January 2019. 51  United Nations Population Division, Abortion Policies: A Global Review, UN Doc. ST/ESA/ SER.A/196 (2002); UN ECOSOC, Abortion Policies and Reproductive Health around the World (2014). 52  United Nations Population Division, Abortion Policies (2020). 44

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legalised abortion on specific grounds and further relaxation has been granted via the Human Fertilisation and Embryology Act (of 1990 and then 2008). Fundamentally, the Abortion Act 1967 allows doctors to perform abortions within the first 24 weeks of pregnancy if there is proof of impairment to mental or physical health. In cases of Down’s syndrome, ‘foetal abnormalities’ or ‘serious handicap’, women can also terminate pregnancy beyond 24  weeks. In Africa, the Maputo Protocol has provided a basis for the African Commission on Human and Peoples’ Rights (‘AComHPR’) to request the decriminalisation of abortion, particularly when pregnancy endangers the mental and physical health of the mother or the foetus,53 also placing abortion in a human rights context.54 Japan allowed abortion on the basis of eugenics from 1948, but reference to eugenics was withdrawn in 1996.55 In the US, following Roe v. Wade, according to State legislation, abortion is mostly lawful in the first trimester of pregnancy, including on grounds of foetal impairment, whilst subsequently the State has a right to limit abortion on health grounds, particularly based on the woman’s health. For instance, in Alabama, the Human Life Protection Act 2019 allows abortion in case of foetal anomaly, but only if this is lethal. Among Latin American States, in Chile, El Salvador, Honduras, and Peru, abortion is severely restricted and calls have been made to decriminalise it in cases of severe or fatal foetal impairment.56

3.2.3  Case Study: The Situation in Poland Poland is the most recent example where disability-based abortion has been significantly restricted, leading to social protests and political tensions as well as raising fundamental issues of discrimination against women that are implicit in the abortion debate under the rights of persons with disabilities. The Law on Family Planning, Protection of the Human Foetus and Conditions for Termination of Pregnancy, in force since 1993 (along with subsequent amendments),57 was seen as a compromise because it tried to offer a middle ground satisfying both supporters and opponents of abortion. Any attempts to either liberalise or tighten abortion law had until recently been unsuccessful. An attempt by the conservative government to tighten abortion law in 2016 failed due to nationwide protests. Now the government has  African Commission on Human and Peoples’ Rights, Statement by Honourable Commissioner Lucy Asuagbor during Launch of ACHPR Campaign for the Decriminalisation of Abortion in Africa, 18 January 2016. 54  International Campaign for Women’s Right to Safe Abortion, The African Leaders’ Declaration on Safe, Legal Abortion as a Human Right, 20 January 2017. 55  Thomas Burch, ‘Induced Abortion in Japan under Eugenic Protection Law of 1948’ (1955) 2(3) Eugenics Quarterly 150. 56  Human Rights Watch, International Human Rights Law and Abortion in Latin America, 2 July 2005. 57  Adopted 7 June 1993. 53

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turned to a different solution: on 22 October 2020, the Constitutional Court ruled that abortion due to foetal defects is unconstitutional.58 This decision covers most cases of abortion in Poland: according to the Ministry of Health official reports, there were 1110 abortion procedures performed in 2019, most of which (1074) were due to the high probability of a severe and irreversible foetal impairment or an incurable life-threatening disease.59 In response to a new wave of protests following the decision of the Constitutional Court, President Andrzej Duda prepared a compromise bill. The proposal restores the possibility of terminating a pregnancy in a manner consistent with the principles of the Polish Constitution, but only in the event of so-called ‘lethal defects’. The bill considers that these defects exist, ‘when prenatal tests or other medical indications reveal a high probability that the child will be born still or burdened with an incurable disease or defect that will lead to the death of the child inevitably and directly, regardless of the therapeutic measures used’.60 To date, this proposal has not been enacted. As of February 2021, abortion is allowed in the case of rape, incest or a threat to the mother’s health and life (such cases constitute two per cent of legal terminations conducted in recent years). In all other cases, abortion is punishable by up to three years imprisonment for both a consenting pregnant woman and the person who helped her. If an illegal abortion were to be performed at the moment when the foetus is able to live independently, the penalty is up to eight years imprisonment.61 Support for a restrictive interpretation of abortion results not only from the influence of the Catholic Church, but also from historical circumstances. Unlimited abortion was legal and encouraged during the German occupation, when harsh measures were taken ‘to keep the conquered from reproducing, particularly in the Slavic east, most particularly in Poland.’62 Abortion law, restricted after the Second World War, was relaxed again during the Soviet occupation and communist terror. These circumstances have often been referred to by pro-life advocates in recent debates. During the period of the ‘abortion compromise’ (1993–2020), pro-life groups supported restricted abortion through regulations, fostering, for instance, ‘conscientious objection’ to abortion, that is, the right of medical staff to refuse participation in abortion owing to their ideological or religious views.63 The criminalisation of abortion in Poland aims to prevent access to abortion, but it may also, as pro-choice advocates claim, discourage medical consultations or

 Polish Constitutional Court, Ruling in Case K/120 (2020).  Statista, Number of Legal Abortions by Reason in Poland: 1994–2019, https://www.statista.com/ statistics/1111281/poland-legal-abortions-number-by-reason. 60  Andrzej Duda przygotował ustawę ws. aborcji, Wiadomości, 2 November 2020. 61  Poland: Thousand Protest as Abortion Law Comes into Effect, https://www.dw.com/en/ poland-thousands-protest-as-abortion-law-comes-into-effect/a-56363990. 62  John Hunt, ‘Out of Respect for Life: Nazi Abortion Policy in the Eastern Occupied Territories’ (1997) 1(3) Journal of Genocide Research 379. 63  Paola Tamma, ‘Even Where Abortion Is Legal, Access Is Not Granted’, 24 May 2018, https:// www.europeandatajournalism.eu. 58 59

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pre-­natal testing, as well as endanger women’s health and life. Doctors will fear criminal liability in the event that the law enforcement bodies, which some scholars claim to be politicised,64 find that their medical assessment of the conditions for abortion is incorrect. For the same reason, they may refrain from assessments ­leading to the conclusion that foetal impairments can endanger a woman’s health and life (in which case abortion would be legally allowed), even if carrying a pregnancy with foetal defects is undeniably associated with the risk of complications and a threat to the life of the woman. Here, the problems of discrimination against women come to the fore: the Committee on the Elimination of Discrimination against Women, in its ‘General recommendation No. 35 on Gender-Based Violence against Women, Updating General Recommendation No. 19,’ states: Violations of women’s sexual and reproductive health and rights, such as…[the] criminalisation of abortion, denial or delay of safe abortion and post-abortion care, forced continuation of pregnancy, abuse and mistreatment of women and girls seeking sexual and reproductive health information, goods and services, are forms of gender-based violence that, depending on the circumstances, may amount to torture or cruel, inhuman or degrading treatment.65

The decision of the Polish Constitutional Court to ban abortion in the case of a foetal impairment has been subject to severe criticism. According to one of the judges, Jarosław Wyrembak, who supports the disability-based abortion ban, but does not agree with the reasoning, the arguments presented in the decision are insufficient, incoherent and inconsistent, and there is ‘a serious and blatant breach of adequacy between the announced oral justification and the written justification.’66 Most importantly, however, the problem is – as the former Ombudsman for Civic Rights, Adam Bodnar, stressed – a lack of balance between the conflicting interests of the mother and the child, as primacy is given to ‘the protection of the conceived life, without considering the rights and freedoms of a woman, who is treated like an object.’67 Consensus seems difficult to reach because of the controversies and disagreements that arise from, among other issues, debates on the rights of an unborn child versus the rights of a woman, the degree of impairment justifying termination of pregnancy, difficulties in defining the notion of a ‘woman’s intolerable suffering’

 See, for instance. Katarzyna Granat, ‘Political and Legal Enforcement of the Rule of Law in Poland’ (2018) 4 Quaderni Costituzionali 924. 65  HRCte, Report of Special Rapporteur on Torture, 5 January 2016, UN Doc A/HRC/31/57; CEDAW Cte, LC v. Peru, Communication 22/2009, UN Doc. CEDAW/C/50/D/22/2009, at para. 8.18; HRCte, Whelan v. Ireland, Communication 2425/2014, UN Doc. CCPR/C/119/D/2425/2014; HRCte, Mellet v. Ireland, Communication 2324/2013, UN Doc. CCPR/C/116/D/2324/2013, at para. 7.4. 66  Lukasz Woznicki, ‘Uzasadnienie bez dyskusji’, Gazeta Wyborcza, 2 January .2021, at 7; tr. by the author. 67  Przesuwamy się w niebezpieczną stronę. Oświadczenie Rzecznika Praw Obywatelskich w związku z wyrokiem TK, January 2021, https://www.rpo.gov.pl/pl/content/oswiadczenierpo-trybunal-aborcja. 64

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versus the suffering of disabled people who are discriminated against through selective abortions, as well as a diversity of views among disabled people themselves.68 The decision of 22 October 2020 of the Polish Constitutional Court refers directly to the previous decision of 1997, when ‘social premises’ were excluded as legal grounds for abortion. Yet, the 1997 decision adopts the principle of differentiating the level of protection: The statement that human life at every stage of its development constitutes a constitutional value subject to protection does not mean that the intensity of this protection in every phase of life and in all circumstances is to be the same’.69

Conversely, the 2020 decision does not include such a reference, radically changing the line of argument.70 Indeed, one of the major problems in debates on disability-­ based abortion is lumping together very different conditions and degrees of impairment. The situation is, however, dynamic and legal ramifications are changing. The same day the Polish Constitutional Court published its decision on the disability-­ based abortion ban, Honduras, one of the few countries worldwide implementing a complete ban on abortion, introduced changes in the Constitución Política de la República de Honduras to prevent the legalisation of abortion in the future.71 These actions followed the significant liberalisation of access to abortion introduced in conservative Argentina in the mid-2020s.72

3.3  T  he Convention on the Rights of Persons with Disabilities and the ‘Pro-life’ v. ‘Pro-choice’ Debate The difference in moral and legal approaches to the question of abortion on grounds of disability in the context of different States is replicated in the travaux préparatoires for the CRPD, which reveal an intense and contrasted debate. The main provision of the CRPD governing the right to life is Article 10, which is the reference

 Referring to a diversity of views on disability, Löwy concluded that disabled people may find it easier to express their views ‘in the absence of visible and active patients’ associations’ that frequently promote strong opinions (ibid.). 69  Polish Constitutional Court, Decision in Case K 26/96 (1997), also specifying: 68

The intensity and type of legal protection is influenced – apart from the value of the protected good – by a number of factors of a different nature that must be taken into account by the ordinary legislator when deciding on the type and intensity of legal protection. 70  Wojciech Sadurski, ‘Kicz konstutucyjny mgr Przyłębskiej’, Gazeta Wyborcza, 29 jan 2021, at 16. 71  Amy Booth, ‘Honduras Changes Constitution to Ban Abortion’, The Lancet, 30 January 2021. 72  ‘Argentina Liberalises Abortion, Joining a Small Group of Latin American States’, The Economist, 30 December 2020.

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norm as concerns abortion.73 However, also CRPD Article 25 is relevant, to the extent that it ensures equality in health care services and governs ‘sexual and reproductive health’.74 The negotiations for the CRPD unfolded via eight sessions of the ad hoc Committee, which were complemented by the sessions of a working group as informed by regional expert meetings and workshops.75 In fact, General Assembly Resolution 56/168 of 19 December 2001 mandated the ad hoc Committee ‘to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’.76 A preliminary draft presented by the Working Group Chair in 2003, based on Article 6(1) of the ICCPR, outlined the right to life for persons with disabilities under Article 12 as the ‘right to life and survival’ of ‘[e]very person with disability’, of which ‘no one shall be arbitrarily deprived’.77 This was followed by debate in the context of the work of the ad hoc Committee, including the opportunity of excluding a provision on the right to life from the CRPD, which reveals a fundamental division between pro-life and pro-choice delegations. The NGO Inclusion International asserted a ‘right to be born’ and ‘to be different’ and stated that the lives of a future person with a disability, particularly intellectual disability, are endangered because of developments in bioethics and prenatal testing.78 The South African Human Rights Commission pointed out that the CRPD right to life provision should have been formulated as ‘[e]very person with a disability has the inherent right to life and survival’, including the expression ‘irrespective of his/her disability.’79 The World Network of Users and Survivors of Psychiatry (‘WNUSP’) supported the inclusion of a right to life provision in the CRPD, considering the practice of euthanising foetuses with anomalies in light of the extent of their suffering, but preserving women’s reproductive rights.80 People  See Smitha Nizar, ‘Article 10: Right to Life’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 287, particularly at 305–311. 74  See Penelope Weller, ‘Article 25: Health’, in Bantekas, Stein and Anastasiou, The UN Convention (2018) 705, particularly at 714–716. 75  Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, https://www.un.org/development/desa/disabilities/resources/ad-hoc-committee-on-a-comprehensive-and-integral-­ international-­convention-on-the-protection-and-promotion-of-the-rights-and-dignity-of-personswith-­disabilities.html. 76  Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, UN GA Res. 56/168, 19 December 2001. 77  Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), https:// www.un.org/esa/socdev/enable/rights/wgcontrib-chair1.htm. 78  Landmine Survivors Network, Daily Summary Related to Draft Article 8, 13 January 2004. 79  Ibid. 80  Ibid. 73

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with Disabilities Australia advocated the framing of CRPD Article 10 for at least actively discouraging abortion aimed at avoiding children with disabilities. These groups also raised concerns of ‘genetic engineering’.81 Among States, India underscored that the right to life as drafted in Article 12 of the Chair’s proposal, whereby ‘no one shall be arbitrarily deprived of his or her life’, should have been qualified by the expression ‘because of disability and/or gender.’82 Colombia also pointed out the necessity of including a provision on genetic discrimination.83 China, which implements family planning, adopted a ‘pro-choice’ stance, considering that, whilst a child who is not yet born has the right to see life, also a mother has a right to a free choice.84 China thus challenged the inclusion of Article 10 in the CRPD, considering that different States take a different stance on abortion in the case of foetal anomalies.85 Ireland urged that the text of Article 12 be sent to the ad hoc Committee with a footnote stipulating on ‘the different views expressed within the Working Group as to whether the Convention should include an article on the right to life.’86 Germany concurred and underscored that it had a strong interest in including an article on the right to life in the CRPD.87 Sierra Leone requested that the footnote in question reflects the disagreement on the content of the right to life and whether it should be included in the CRPD.88 The Coalition of Individuals, Organisations and Agencies of the People, for the People and by the People with Disabilities in Eastern Europe (‘the Coalition’), which includes Ukraine, Russia, Belarus, Moldova and Poland, stressed the need to highlight in the Convention the core rights for people with disabilities that are guaranteed under the Universal Declaration of Human Rights, including ‘the right to life, liberty and security of person’ to be secured for ‘any person with disabilities’.89 At the same time, the Coalition observed that there is inadequate medical, social, educational, cultural and economic support for people with disabilities in Eastern Europe. It also drew attention to considerable stigma and discrimination against people with disabilities in the region, the institutional discrimination resulting from Soviet policies and the further marginalisation of people with disabilities following the post-Soviet economic transition. Among problems specific to the region, the fact was highlighted that some of the Eastern European countries, Ukraine and Belarus in particular ‘are still suffering from the impact of the Chernobyl nuclear disaster

 Ibid.  Ibid. 83  Ibid. 84  Ibid. 85  Ibid. 86  Ibid. 87  Ibid. 88  Ibid. 89  Ibid. 81 82

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that took place in April 1986 and [which] resulted in a dramatic increase in congenital birth defects.’90 In 2004, the ad hoc Committee crystallised the right to life in the proposal for provisional CRPD Article 8, providing that ‘States Parties reaffirm the inherent right to life of all persons with disabilities’ and ‘take all necessary measures to ensure its effective enjoyment’.91 The expression ‘effective enjoyment’ reflects the ambiguity of the underpinning debate and leaves it open to doubt whether disability allows the ‘effective enjoyment’ of life.92 A negative answer would suggest the possibility of abortion in the case of a foetal anomaly, whilst a positive answer would reduce or exclude it. In the following debate, the ad hoc Committee included in its Compilation of Proposals for Elements of a Convention the observations of NGOs that ‘prenatal diagnosis aiming to prevent the birth of persons with disabilities and dangerous developments in the field of euthanasia’ would ‘require a special attention in the future convention.’93 The WNUSP pointed out the necessity that ‘no person’ be ‘deprived of the right to life or the right to reproductive choice on account of actual .or perceived disability’.94 In light of this debate, the Committee established that the right to life ‘shall be protected by law’ and ‘[n]o one shall be arbitrarily deprived of his or her life’, with such a claim being conceived of as the ‘inherent right’ of ‘every person’ to ‘life and survival’.95 The provision left again room for disagreement as concerns the possibility of termination, particularly because of the adjective ‘arbitrarily’ – can it be said that abortion in the case of foetal anomaly is arbitrary? In the subsequent discussion that took place in the Working Group, positions on the right to life were still divided. The NGO People with Disability Australia suggested that the right to life, based on ICCPR Article 6, should have addressed the

 Ibid. Among specific provisions on the implementation process of the rights of people with disabilities, the Coalition included the ‘[r]ight to a life without stigma and discrimination’, which entails the exclusion of ‘inappropriate terminology such as defective, deficient people’, as ‘it is the duty of State parties to educate the public about people with special or different needs, people with disabilities, thereby focusing on the person first and then the differences s/he has’ (UN Enable, Ad Hoc Committee on an International Convention, Compilation of Events, Coalition of Individuals, Organisations and Agencies of the People, for the People and by the People with Disabilities in Eastern Europe (Ukraine, Russia, Belarus, Moldova and Poland), 13 December 2003 (Coalition Eastern Europe); https://www.un.org/esa/socdev/enable/rights/wgcontrib-EastEurope.htm). The Coalition indeed stressed that people who experience demeaning or humiliating treatment must be compensated either by the government or by the perpetrators (ibid.). 91  Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Report to the Ad Hoc Committee, UN Doc. A/AC.265/2004/WG.1, 27 January 2004, at 14. 92  See Bret Shaffer, ‘The Right to Life, the Convention on the Rights of Persons with Disabilities, and Abortion’ (2009) Penn State Law Review 265, at 279. 93  Compilation of Proposals for Elements of a Convention, 15 January 2004, http://www.un.org/ esa/socdev/enable/rights/comp-element6.htm. 94  Ibid. 95  Ibid. 90

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specific situation of the disabled.96 The NGO underscored that pre-natal genetic testing to detect chromosome variations resulting in impairment is mostly used to support selective termination and concluded that the CRPD should be used to ‘erect an ethical constraint’ against the use of genetic information for preventing the life of children with disability.97 People with Disability Australia stressed the importance of free choice for women, but also advocated for reducing overwhelmingly inaccurate genetic test results and not excluding children born with a disability from governmental support schemes.98 The International Disability Caucus opposed compulsory abortion and stressed that disability is not a justification for terminating life, without specifying, however, when life begins. Among States, Kenya suggested that the right to life includes ‘the right for persons with disabilities to survive and to develop on an equal basis with other persons.’99 The EU, on the other hand, supported a general provision, whereby ‘States Parties reaffirm the inherent right to life of all persons with disabilities’ and ‘take all necessary measures to ensure its effective enjoyment by them.’ Chile suggested to include in the right to life provision a reference to ‘the various stages’ in the life of a person.100 In the Fifth ad hoc Committee Daily Summaries Report, Costa Rica underscored that the inherent right to life of people with disabilities is not different from the right to life of anyone else.101 Based on the perception that the quality of life of infants with disabilities might be treated differently from other children, the US suggested the inclusion in the CRPD of a provision establishing that ‘States Parties reaffirm the inherent right to life of all persons with disabilities’ and ‘shall ensure that disability, or perceived quality of life, shall not serve as a basis for infringement of the right to life.’102 The Russian Federation also expressed concerns that CRPD Article 10 should include specific safeguards for persons with disabilities.103 El Salvador put forward the view that the ‘right to life’ commences at conception, thus supporting a restrictive approach to abortive practices with respect to impaired foetuses.104 This proposal was supported by the Holy See.105 A proposal by New Zealand in favour of mentioning that States must take action to fulfil the right to life of persons with disabilities, ‘on an equal basis with others’ was favourably supported by the Coordinator,

  Enable, Article 8 Fourth Session Comments, Proposals and Amendments Submitted Electronically, https://www.un.org/esa/socdev/enable/rights/ahcstata11fscomments.htm. 97  Ibid. 98  Ibid. 99  Ibid. 100  Ibid. 101  Fifth Ad Hoc Committee Daily Summaries, 24 January 2005) 10 (El Salvador), http://www. un.org/esa/socdev/enable/rights/ahc5docs/ahc5sum24jan.doc. 102  Ibid. 103  Ibid. 104  Ibid. 105  Daily Summary of Discussion at the Fifth Session, 25 January 2005, https://www.un.org/esa/ socdev/enable/rights/ahc5sum25jan.htm. 96

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as was their suggestion to substitute the concept of a ‘human being’ with that of a ‘person’, so as to match the language of ICCPR Article 6.106 In the ensuing comments, proposals and amendments, the International Disability Caucus again expressed the view that the right to life provision, by then Article 10, should apply ‘in all stages of life’, also suggesting to include the wording that ‘[d]isability is not a justification to terminate life’.107 India expressed concern that the language of Article 10 could be interpreted so as to allow the termination of life as a foetus.108 The Final Report of the ad hoc Committee, which was prepared at the Eighth Session,109 includes the definitive version of CRPD Article 10 (Right to Life): Article 10 Right to life States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

This text was later adopted in 2006 as an integral part of the CRPD. It is quite broad and thus leaves a margin of interpretation that summarises the uncertainties of the debate that accompanied the evolution of the provision on the right to life in the context of the CRPD. The Convention reflects tensions underpinning the debate, as it accommodates differing views and the allocation of rights regarding the pro-­ choice versus anti-abortion debate. Article 10 does not embed a definitive stance on abortion: the debate on the right to life is far from coming to an end. Notably, the final reference to the life of a ‘human being’ rather than ‘a person’ might be interpreted as a way to expand the right to life to the unborn. It is nonetheless unclear whether the expression ‘effective enjoyment’ should be interpreted in the sense that a person with disabilities cannot ‘effectively’ enjoy life. When the CRPD was adopted in 2006, thirteen State delegations, and particularly the Holy See, expressed the view that CRPD Article 25 does not establish a right to abortion, overlooking the historic tension that underpins Article 10.110 According to the Holy See, the reference to ‘sexual and reproductive health’ embedded in Article 25 of the CRPD, on the right to health, establishes a holistic concept that ‘does not consider abortion or access to abortion as a dimension of those

 Ibid.   Enable, Article 8 Seventh Session Comments, Proposals and Amendments Submitted Electronically, https://www.un.org/esa/socdev/enable/rights/ahcstata10sevscomments.htm. 108  Ibid. 109  Final Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, UN Doc. A/61/611, 6 December 2006. 110  Intervention by the Holy See at the 76th Plenary Meeting of the General Assembly of the United Nations on Human Rights and Fundamental Freedoms, Address by HE Msgr Celestino Migliore, 13 December 2006, https://www.vatican.va/roman_curia/secretariat_state/2006/documents/ rc_seg-st_20061213_un-rights-persons_en.html. 106 107

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terms’.111 The travaux préparatoires should thus not be interpreted so as to create the right to abortion in the case of foetal abnormality, but would only aim to ensure that disability is not used as a basis for denying health services. In any case, the reference to ‘sexual and reproductive health’ would not be welcome in the CRPD, because ‘in some countries reproductive health services include abortion, thus denying the inherent right to life of every human being’, in contrast with Article 10 of the Convention.112 Thus, it is considered ‘surely tragic’ that, when a ‘foetal defect is a precondition for offering or employing abortion’, the ‘same Convention created to protect persons with disabilities from all discrimination in the exercise of their rights may be used to deny the very basic right to life of disabled unborn persons.’113 This is the reason why the Holy See eventually decided not to sign the CRPD.114

3.4  T  he Stance of International Human Rights Bodies and Representative Organisations 3.4.1  International Institutions UN treaty bodies have identified minimum grounds for legalising abortion via recommendations to States, fundamentally expressing favour for the abortion of an impaired foetus. This is particularly the case of the Human Rights Committee (‘HRCte’) and the Committee on Economic, Social and Cultural Rights (‘CteESCR’). For instance, in its Concluding Observations on the Dominican Republic, the CteESCR invited the fast-tracking of the discussion on the decriminalisation of abortion when necessary, for example, in cases of ‘foetal non-viability’ for the purpose of safeguarding women’s fundamental rights.115 The HRCte has been particularly active in the area, in light of several provisions of the ICCPR. In its case law, the Committee has specified that States must ensure access to abortion in cases of fatal foetal damage. In the key dispute of Whelan v. Ireland, the Committee dealt with the situation of the petitioner, who, on 4 January 2010, was in the twentieth week of her second pregnancy when an ultrasound scan at Wexford General Hospital in Ireland revealed that the foetus was affected by holoprosencephaly, a congenital brain malformation entailing disfunctioning of the heart, kidney and other vital organs and leaving little chance of survival. The petitioner felt she could not continue pregnancy only to see the baby suffer and die. Due to severe restrictions to abortion in Ireland, she was forced to abort in Liverpool,  Ibid.  Ibid. 113  Ibid. 114  Ibid. 115  ESCR Committee, Concluding Observations: Dominican Republic, UN Doc. E/C.12/DOM/ CO/4, 21 October 2016, at 10, para 60(a). 111 112

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where she had to abandon the remnants of the foetus. The Committee considered that the case raised the ‘profound moral question of the extent to which the interests of a foetus should be protected and balanced against the rights of women’.116 It held Ireland in violation of the petitioner’s rights under Articles 7 (prohibition of torture, cruel, inhuman or degrading treatment or punishment), 17 (right to privacy) and 26 (equal protection before the law). In its 2018 General Comment on the right to life, the HRCte underscored that ‘[p]ersons with disabilities, including psychosocial or intellectual disabilities’ are ‘entitled to specific measures of protection so as to ensure their effective enjoyment of the right to life on an equal basis with others’.117 The Committee also specified that State Parties ‘should develop strategic plans for advancing the enjoyment of the right to life’, including ‘measures to fight the stigmatization associated with disabilities’.118 Despite this egalitarian approach, the HRCte pointed out that ‘States parties must provide safe, legal and effective access to abortion’, including when pregnancy ‘is not viable’.119 In its input to General Comment 36, the UN Working Group on the Issue of Discrimination against Women in Law and in Practice expressed the view that a narrow list of grounds for abortion, including fatal foetal impairment, was excessively restrictive.120 Abortion restrictions should not affect ‘the right of a woman or girl to make autonomous decisions about her own body and reproductive functions’, which is ‘at the very core of her fundamental right to equality and privacy, concerning intimate matters of physical and psychological integrity, as protected under Articles 3 and 17 of the ICCPR.’121 Accordingly, States should simply allow ‘women to terminate a pregnancy on request during the first trimester.’122 The pro-choice approach has nonetheless attracted critiques. The CteRPD espoused a pro-life approach. Commenting on a preliminary draft of HRCte General Comment 36, the CteRPD expressed concern about allowing abortion ‘when the foetus suffers from fatal impairment’, a formulation that is more restrictive than that

 HRCte, Whelan v Ireland, Comm No 2425/2014, at 14, para. 7.2.  HRCte, General Comment No. 36 (2018) on Article 6 of the International Covenant on Civil and Political Rights, on the Right to Life, UN Doc. CCPR/C/GC/36 (2018) at 5, para. 24. 118  Ibid, at 6, para. 26. 119  Ibid, at 2, para. 8. See also HRCte, Concluding Observations: Ireland, UN Doc. CCPR/C/IRL/ CO/4 (2014) at para 9; Id., Concluding Observations: Great Britain and Northern Ireland UN Doc. CCPR/C/GBR/CO/7 (2015) at para 17; Id., Concluding Observations: Honduras, UN Doc. CCPR/C/HND/CO/2 (2017) at para. 17. 120  Working Group on the Issue of Discrimination against Women in Law and in Practice, Inputs on the Human Rights Committee Draft General Comment No. 36 on Article 6 of the International Covenant on Civil and Political Right, on the Right to Life, October 2017, at 1–2. 121  Ibid. 122  Working Group on the Issue of Discrimination against Women in Law and in Practice, Women’s Autonomy, Equality and Reproductive Health in International Human Rights: Between Recognition, Backlash and Regressive Trends, October 2017, at 1. 116 117

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finally adopted by the HRCte.123 The CteRPD proposed to delete the proposed ‘foetal impairment’ language, arguing that laws that permit abortion on grounds of impairment are in breach of CRPD Article 4 (General Obligations), 5 (Equality and Non-discrimination) and 8 (Awareness-raising). According to the CteRPD, it is often difficult to establish when impairment is fatal and, even when the condition of the foetus is considered so, ‘there is still a decision [to be] made on the basis of impairment’.124 In any case, the assessment on fatal foetal impairment ‘perpetuates notions of stereotyping disability as incompatible with a good life.’125 This stance is particularly significant, because, as we have seen,126 CRPD Article 10 on the right to life builds on its ‘twin’, ICCPR Article 6. The interpretation of the CteRPD therefore departs from the ICCPR as interpreted by the HRCte. The approach illustrated by the CteRPD in its view on General Comment 36 is consistent with the predominant case law of the Committee. In its Concluding Observations on the initial report of Hungary under the CRPD, the CteRPD recommended the abolishment of any distinction under the law on ‘the protection of the life of the fœtus in the period allowed under law within which a pregnancy can be terminated, based solely on disability’, thus extending the right to life to the time of conception, according to the stance of the Holy See.127 Even more explicitly, in the concluding observations on the initial report of the UK, the CteRPD underscored that ‘[w]omen’s rights to reproductive and sexual autonomy should be respected without legalizing selective abortion on the ground of foetal deficiency.’128 In its Concluding Observations on Austria, whilst explicitly acknowledging ‘women’s right to reproductive autonomy’,129 the Committee noted that Austrian law allows foetal abortion up to the onset of birth in the case of serious damage to the health of the foetus and expressed concern about a possible link between this provision and OECD statistics, which revealed a 60 per cent decrease in births of children with Down’s syndrome in Austria between 1995 and 2006.130 As in the case of Hungary, the Committee recommended that Austria abolish ‘any distinction in the period allowed under law within which a pregnancy can be terminated based solely on disability.’131 Nonetheless, in its 2018 concluding observations on Poland, which at  Committee on the Rights of Persons with Disabilities, Comments on the Draft General Comment No. 36 of the Human Rights Committee on Article 6 of the International Covenant on Civil and Political Rights (2018) at para. 1. 124  Ibid. 125  Ibid. 126  Section 3. 127  See, for instance, CteRPD, Concluding Observations: Hungary, CRPD/C/HUN/CO/1, 22 October 2012, at 3, para. 18. 128  CteRPD, Concluding Observations: United Kingdom, UN Doc CRPD/C/GBR/CO/1, 3 October 2017, at para. 13. 129  CteRPD, Concluding Observations: Austria, CRPD/C/AUT/CO/1, 13 September 2013, at para. 14. 130  Ibid, at para. 14. 131  Ibid, at para. 15. 123

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the time allowed abortion on grounds of foetal impairment, the Committee took a more permissive stance and simply required the taking of measures necessary to grant that the autonomy of women with disabilities be respected, including safe abortion.’132

3.4.2  The View of Representative Organisations In the midst of abortion debates, voices of disabled people and their families are often drowned out. Strong pro-life trends are often not supported by concrete action. Discussion on disability-based abortion leads directly to debates on social inclusion; they disclose immense challenges that disabled people and their families face at different stages of their life. For many, inclusion starts with pregnancy: the mother of a 20-year-old daughter with Down syndrome described this first phase saying ‘the most important thing for me is how we were told about her illness.’133 An important first step of social inclusion seems to be the creation of a supportive environment for the parents to understand the situation and their responsibilities, and due preparation for the birth of their child. Parents’ experience, both positive and negative, is important too: by listening to them individually one can better understand what changes are necessary.134 Even if governmental efforts to protect life are ambitious – as they seem to be in Poland, where the government’s abortion ban is to be followed by building perinatal hospices, providing high one-off benefit payments and high monthly subsidies, and regulating carers’ job entitlements (for instance, retirement rights) – the reality is different: priorities are difficult to meet and the approach is not sufficiently comprehensive. As a mother notes: ‘Poland has not developed a system that would help parents in caring for a disabled child. It’s the parents who fight the system.’135 Most importantly: [T]here is no culture of working together. The theme of disability centres on two types of narrative. The first one with a predominant sense of tragedy, the second one that is infantile, it treats the disabled as big children.’136

Thus, it seems that problems with inclusion start at the very basic level of communication and understanding of disability, which is shaped by professed hierarchies of values, myths and stereotypes. Challenges multiply when disabled people grow up and want to live independently and participate in social life. Social acceptance is  CteRPD, Concluding Observations: Poland, UN Doc CRPD/C/POL/CO/1, 29 October 2018, at para. 44. 133  Marta Bergier, ‘Szkola rodzicow’, Tygodnik Powszechny, 14 February 2021, at 16–17. 134  Wojciech Bonowicz, ‘Życie trudne, życie piękne’, Tygodnik Powszechny, 14 February 2021, at 12–15. 135  Bergier, ‘Szkola rodzicow’ (2021) at 16–17. 136  Ibid. 132

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only an initial basic step and its significance can be ambiguous.137 The pro-life movements should thus first and foremost focus on creating a supportive living environment for people with disabilities and their families. Instead, as Bonowicz argues: ‘[p]eople with intellectual disabilities have become a bargaining chip in the conflict over abortion laws. But it hasn’t changed much for them.’138 Consistent with the CRPD, in a recent report, Women Enabled International has advocated the inclusion of women and women with disabilities in the ‘pro-life’ versus ‘pro-choice’ debate, given that women bear the consequences of abortion, restrictions and disability-related stigma.139 The report also highlights the necessity of involving the disability rights movement and women’s rights movement as representative organisations to foster advocacy efforts. Accordingly, the reproductive rights movement should support either fully decriminalised abortion or legal abortion without restriction, instead of advocating minimum grounds for legalising abortion.140 The movement should also abandon the distinction between ‘foetal impairment’ and ‘severe or fatal foetal impairment’, which strengthens the stigma about the ‘quality of life’ of the disabled. The report recommends inclusion by ensuring accessibility to material concerning reproductive health and rights for the community of disabled people, for instance, via large print information available for women with visual impairments or plain language for women with intellectual disabilities. With respect to the disability rights movement, the report recommends recognising that not every foetal impairment diagnosis leads to a disability after birth and that miscarriage, stillbirth, and the death of an infant cause trauma for the pregnant woman.141 The report also recommends that the reproductive rights community develop a better understanding of questions relating to informed consent and supported decision-making and advocates for legal abortion without restriction. However, the involvement of disability rights movements or disease-advocacy organisations in the pro-life and pro-choice debate is not beyond reproach. Löwy and Paul argue that the views of people with disabilities or parents of disabled children should not be conflated with organisational standpoints, which may be ‘unrepresentative of what is a wide range of individual experiences, perceptions and viewpoints.’142 They thus stress that individuals with the same disability may have different opinions on selective abortion in cases of foetuses with the same condition, for example, a hereditary condition. Furthermore, some disability rights movements typically do not support disability-based abortion and tend to promote the view that people with a disability, such as Down Syndrome, can be, and usually are, satisfied

137  Wojciech Bonowicz draws attention to the importance of the social context and climate, referring to the paradox that higher social acceptance of people with Down’s syndrome and other types of intellectual disability corresponds to a higher number of abortions performed after it is diagnosed that a child may be disabled (Bonowicz (2021) at 12–15). 138  Ibid. 139  Women Enabled International, Abortion and Disability (2020) at 26. 140  Ibid., at 26. 141  Women Enabled International, Abortion and Disability (2020) at 27. 142  Löwy, ‘Abortion for Fetal Anomaly’ (2020) and Diane Paul and Ilana Löwy, ‘On Objectivity in Prenatal Genetic Care’ (2018) 2(2) OBM Genetics 22.

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with their life. Therefore, representative organisations see their mission as correcting what they consider misinformation of health practitioners about the challenges of living with a disability, with a view to reducing the number of disability-based abortions. Paul and Löwy stress that ‘if providers exaggerate burdens’, some ‘patient/parent advocacy groups tend to focus exclusively … on the most positive outcomes, ignoring the heterogeneity of patient and parent circumstances’;143 therefore, objectivity in prenatal care is hardly possible. The authors claim that experiential knowledge should always be privileged above organisational viewpoints, since what parents want to know is – as Saul and Meredith identified (2016) – ‘what life is like for people living with specific genetic conditions in the real world.’144 Unfortunately, research and statistics to this end are in short supply.145 These arguments show that international pro-life and pro-choice debates are often far from reaching objectivity: while pro-life advocates are typically seen as allies of disabled people, insistence on a pro-life approach can result in discrimination against those disabled persons, who do not share the same view. In this regard, the pro-choice stance of Women Enabled International is particularly meaningful.

3.5  Conclusion Concerning abortion, there is a tendency to recognise the right of persons with disabilities, rectius, different abilities, to equal treatment with other people and overcome the medical approach to disability, implement the social model and avoid direct discrimination against the disabled. This postulates that an impaired foetus should be treated on the same footing as a non-impaired foetus. However, the debate is fraught with several unresolved moral and legal issues. By nature, this is an area where achieving harmonisation will prove quite difficult, despite the adoption of the CRPD. Fundamentally, it remains problematic to establish when life and personhood exactly begin. If life and personhood begin at conception, then an impaired foetus should be treated in the same way as a normal one – to act differently would be discriminatory. Yet, surprisingly, it is not entirely unambiguous what such an argument really means. The assumption that life begins at conception is the major argument against disability-based abortion. However, it is not systemically applied in cases of pregnancy resulting from rape or incest, which can be legally terminated in countries such as Poland. Many critics of abortive restrictions, as well as pro-life advocates, claim that, if the exception for rape and incest is acceptable, the ‘life begins at conception’ argument should not be considered generally applicable and only makes sense in the case of a total abortion ban.

 Paul and Löwy, ‘On Objectivity” (2018) 22.  Robert A. Saul and Stephanie Hall Meredith, ‘Beyond the Genetic Diagnosis: Providing Parents What They Want to Know’ (2016) 37 Pediatr Rev 269. 145  Paul and Löwy, ‘On Objectivity’ (2018) at 22. 143 144

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However, even assuming that life and personhood begin after birth (or at some earlier pre-natal time or state such as the third trimester or the point of ‘viability’) raises several ethical and legal problems. In particular, it is necessary to balance indirect discrimination and stigmatisation vis-à-vis the disabled who is already born with the necessity of avoiding excessive suffering in life that disability might entail: is the life of a disabled person worth living? Whilst the question raises deep ethical dilemmas, most women who learn that their foetus is impaired choose to abort.146 From a legal standpoint, most developed countries allow abortion on grounds of foetal impairment, but not all States have taken the same approach. National fragmentation is reflected at the international level in the CRPD, where the right to life is subject to evasive regulation under Article 10 and the right to health under Article 25 discloses room for allowing abortion for purposes of ‘sexual and reproductive health’. Key human rights bodies, notably the HRCte, have interpreted fundamental instruments, particularly the ICCPR, in terms that are essentially pro-choice. Conversely, the CteRPD has adopted a much more restrictive stance, which goes towards a pro-life approach. It is interesting to note that human rights bodies and representative organisations with a focus on women, such as the UN Working Group on the Issue of Discrimination against Women in Law and Women Enabled International, mostly express a pro-choice approach, along the lines of the determination of women who experience foetuses affected by disability. This pro-choice emphasis does not necessarily mean a choice against life, and thus against the disabled, but often the beginning of a complex process of choice-making. According to Bertha Alvarez Manninen, ‘affirming the existence of this right [a woman’s right to decide] in no way ends the debate about the moral dimensions of abortion choice. Foetuses matter.’147 The pro-choice stance rather shifts the debate to include considerations on the need for both the foetus’ and women’s rights to be free from discrimination and on the necessity for social inclusion for disabled individuals.

References148 Documents Ad Hoc Committee on the CRPD, Working Group Chair. 2003. Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, https://www.un.org/esa/socdev/enable/rights/wgcontrib-­chair1.htm.

 Caroline Mansfield et  al., ‘Termination Rates after Prenatal Diagnosis of Down Syndrome’ (1999) at 811. 147  Bertha Alvarez Manninen, ‘The Replaceable Fetus: A Reflection on Abortion and Disability’, Disability Studies Quarterly Vol 35, No 1 (2015). 148  Websites accessed 18 January 2022. 146

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Ad Hoc Committee on the CRPD. 2004. Compilation of Proposals for Elements of a Convention, http://www.un.org/esa/socdev/enable/rights/comp-­element6.htm. Ad Hoc Committee on the CRPD. 2004. Report to the Ad Hoc Committee, UN Doc. A/ AC.265/2004/WG.1. Ad Hoc Committee on the CRPD. 2005. Daily Summary of Discussion at the Fifth Session, https:// www.un.org/esa/socdev/enable/rights/ahc5sum25jan.htm. Ad Hoc Committee on the CRPD. 2006. Final Report. UN Doc A/61/611. African Commission on Human and Peoples’ Rights. 2016. Statement by Honourable Commissioner Lucy Asuagbor during Launch of ACHPR Campaign for the Decriminalisation of Abortion in Africa. Committee on the Rights of Persons with Disabilities. 2018. Comments on the Draft General Comment No. 36 of the Human Rights Committee on Article 6 of the International Covenant on Civil and Political Rights. Convention for the Protection of Human Rights and Fundamental Freedoms, opened for signature 4 November 1950, entered into force 3 September 1953. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, in force 3 May 2008. CteRPD. 2012. Concluding Observations: Hungary, CRPD/C/HUN/CO/1. CteRPD. 2013. Concluding Observations: Austria, CRPD/C/AUT/CO/1. CteRPD. 2017. Concluding Observations: United Kingdom, UN Doc CRPD/C/GBR/CO/1. CteRPD. 2018. Concluding Observations: Poland, UN Doc CRPD/C/POL/CO/1. Douwe Korff. 2006. The Right to Life. A Guide to the Implementation of Article 2 of the European Convention on Human Rights, Directorate General of Human Rights, Council of Europe. Enable, Article 8 Seventh Session Comments, Proposals and Amendments Submitted Electronically, https://www.un.org/esa/socdev/enable/rights/ahcstata10sevscomments.htm. Enable. 2006. Article 8 Fourth Session Comments, Proposals and Amendments Submitted Electronically, https://www.un.org/esa/socdev/enable/rights/ahcstata11fscomments.htm. ESCR Committee. 2016. Concluding Observations: Dominican Republic, UN Doc. E/C.12/ DOM/CO/4. Fifth Ad Hoc Committee on the CRPD. 2005. Daily Summaries (El Salvador), http://www.un.org/ esa/socdev/enable/rights/ahc5docs/ahc5sum24jan.doc. Holy See. 2006. Intervention by the at the 76th Plenary Meeting of the General Assembly of the United Nations on Human Rights and Fundamental Freedoms, Address by HE Msgr Celestino Migliore, https://www.vatican.va/roman_curia/secretariat_state/2006/documents/ rc_seg-­st_20061213_un-­rights-­persons_en.html. HRCte. 2014. Concluding Observations: Ireland, UN Doc. CCPR/C/IRL/CO/4. HRCte. 2015. Concluding Observations: Great Britain and Northern Ireland UN Doc. CCPR/C/ GBR/CO/7. HRCte. 2016. Report of Special Rapporteur on Torture, UN Doc A/HRC/31/57. HRCte. 2017. Concluding Observations: Honduras, UN Doc. CCPR/C/HND/CO/2. HRCte. 2018. General Comment No. 36 (2018) on Article 6 of the International Covenant on Civil and Political Rights, on the Right to Life, UN Doc. CCPR/C/GC/36. Human Rights Watch. 2005. International Human Rights Law and Abortion in Latin America. International Campaign for Women’s Right to Safe Abortion. 2017. The African Leaders’ Declaration on Safe, Legal Abortion as a Human Right. International Covenant on Civil and Political Rights, opened for signature 16 December 1966, 991 UNTS 171, in force 23 March 1976. Landmine Survivors Network. 2004. Daily Summary Related to Draft Article 8. Poland. 1993. Law on Family Planning, Protection of the Human Foetus and Conditions for Termination of Pregnancy. UN ECOSOC. 2014. Abortion Policies and Reproductive Health around the World. UN Enable, Ad Hoc Committee on an International Convention. 2003. Compilation of Events, Coalition of Individuals, Organisations and Agencies of the People, for the People and by the People with Disabilities in Eastern Europe (Ukraine, Russia, Belarus, Moldova and Poland), https://www.un.org/esa/socdev/enable/rights/wgcontrib-­EastEurope.htm.

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UN GA. 1959, Declaration of the Rights of the Child, Res 1386 (XIV). UN GA. 2001. Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Res. 56/168. United Nations Convention on the Rights of the Child. Opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. United Nations Population Division. 2002. Abortion Policies: A Global Review, UN Doc ST/ESA/ SER.A/196. United Nations Population Division. 2002. Updated Study on Abortion Policies, POP/830. Women Enabled International. 2020. Abortion and Disability: Towards an Intersectional Human Rights-Based Approach. Working Group on the Issue of Discrimination against Women in Law and in Practice. 2017. Inputs on the Human Rights Committee Draft General Comment No. 36 on Article 6 of the International Covenant on Civil and Political Right, on the Right to Life. Working Group on the Issue of Discrimination against Women in Law and in Practice. 2017. Women’s Autonomy, Equality and Reproductive Health in International Human Rights: Between Recognition, Backlash and Regressive Trends. World Health Organization. 2008. Primary Health Care: Now More than Ever, World Health Report, http://www.who.int/whr/2008/whr08_en.pdf.

Cases CEDAW Cte, LC v. Peru, Communication 22/2009, UN Doc. CEDAW/C/50/D/22/2009. HRCte, Mellet v. Ireland, Communication 2324/2013, UN Doc CCPR/C/116/D/2324/2013. HRCte, Whelan v. Ireland, Communication 2425/2014, UN Doc. CCPR/C/119/D/2425/2014. Polish Constitutional Court, Decision in Case K 14/03, 7 January 2004. Polish Constitutional Court, Decision in Case K 26/96, 28 May 1997. Polsh Constitutional Court, Ruling in Case K/120, 22 October 2020. Roe v. Wade, 410 US 113 (1973). Tysiąc v. Poland, ECtHR, Case n. 5410/03, Judgment of 20 March 2007. X v. the United Kingdom, EComHR, Appl No 8416/79, Admissibility Decision of 13 May 1980.

Bibliography Bantekas, I., Stein, M. A., & Anastasiou, D. (Eds.). (2018). The UN Convention on the Rights of Persons with Disabilities: A commentary. Oxford University Press. Berer, M. (2017). Abortion law and policy around the world: In search of decriminalization. Health Hum Rights, 13. Bergier, M. (2021). Szkola rodzicow. Tygodnik Powszechny. Bonowicz, W. (2021). Życie trudne, życie piękne’. Tygodnik Powszechny. Booth, A. (2021). Honduras changes constitution to ban abortion. The Lancet. Burch, T. (1955). Induced abortion in Japan under eugenic protection law of 1948. Eugenics Quarterly, 2(3), 150. Cleeve, A., et al. (2016). Time to act – Comprehensive abortion care in East Africa. The Lancet Global Health, 4(9), e601. Davis, N. (2019). Euthanasia and assisted dying rates are soaring. But where are they legal? The Guardian.

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Finer, L., & Fine, J. B. (2013). Abortion law around the world: Progress and pushback. American Journal of Public Health, 103(4), 585. Fox, D., & Griffin, C. L. J. (2009). Disability-selective abortion and the Americans with disabilities act. 3 Utah Law Review, 3, 846. Gillam, L. (1999). Prenatal diagnosis and discrimination against the disabled. Journal of Medical Ethics, 25(2), 163. Gonzalez, I. (2017). Abortion rights in Cuba face new challenges. Havana Times. Granat, K. (2018). Political and legal enforcement of the rule of law in Poland. Quaderni Costituzionali, 4, 924. Holtug, N. (2017). Against human gene therapy. Cambridge Quarterly of Healthcare Ethics, 6, 159. International Campaign for Women’s Right to Safe Abortion. (2017). Cuba – Abortion has been safe and free in Cuba for over half a century. Jarvis, G. E. (2016). Early embryo mortality in natural human reproduction: What the data say. F1000Res, 5, 2765. Jesudason, S., & Epstein, J. (2011). The paradox of disability in abortion debates: Bringing the pro-choice and disability rights communities together. Contraception, 84, 541. John, H. (1997). Out of respect for life: Nazi abortion policy in the eastern occupied territories. Journal of Genocide Research, 1(3), 379. Kjelsvik, M. (2018). Women’s experiences when unsure about whether or not to have an abortion in the first trimester. Health Care for Women International, 39(4), 784. Long, L. (2020). Abortion in Canada, The Canadian Encyclopaedia. https://www.thecanadianencyclopedia.ca/en/article/abortion. Löw, I. (2020). Abortion for fetal anomaly: How to speak about a difficult topic. Cadernos de Saúde Pública, 36. https://doi.org/10.1590/0102-­311x00188618. Manninen, B. A. (2015). The replaceable fetus: A reflection on abortion and disability. Disability Studies Quarterly, 35(1). https://doi.org/10.18061/dsq.v35i1.3239. Mansfield, C., et al. (1999). Termination rates after prenatal diagnosis of down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review. Prenatal Diagnosis, 19, 808. Neaves, W. (2017). The status of the human embryo in various religions. Development, 144, 2541. Nizar, S. (2018). Article 10: Right to life. In I. Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (p. 287). Oxford University Press. Paul, D., & Löwy, I. (2018). On objectivity in prenatal genetic care. OBM Genetics, 2(2), 22. Sadurski, W. (2021). Kicz konstutucyjny mgr Przyłębskiej’. Gazeta Wyborcza. Sambaiga, R., Haukanes, H., Moland, K.  M., & Blystad, A. (2019). Health, life and rights: A discourse analysis of a hybrid abortion regime in Tanzania. International Journal for Equity in Health, 18, 1. Saul, R. A., & Meredith, S. H. (2016). Beyond the genetic diagnosis: Providing parents what they want to know. Pediatrics in Review, 37, 269. Shaffer, B. (2009). The right to life, the convention on the rights of persons with disabilities, and abortion. The Penn State Law Review, 265. Tamma, P. (2018). Even where abortion is legal, access is not granted. https://www.europeandatajournalism.eu. Wada, T. (2010). Abortion law in Ethiopia: A comparative perspective. Mizan Law Review, 2(1), 1. Weller, P. (2018). Article 25: Health. In I. Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (p.  705). Oxford University Press. Wójcik, S. (2020). Religia chrześcijańska, prawo, państwo. Zeszyty Naukowe KUL, 2(250), 64. Woznicki, L. (2021). Uzasadnienie bez dyskusji. Gazeta Wyborcza.

Chapter 4

The Right to Inclusive Education for Persons with Disabilities: A Comparative Analysis of State Progress Jane Kotzmann, Emily Griffith, and John R. Morss

Contents 4.1  I ntroduction 4.2  T  he Right to Education of Persons with Disabilities 4.2.1  International Instruments 4.2.2  Requirements of Inclusive Education 4.3  Examination of Implementation of the Right to Inclusive Education 4.3.1  Inclusiveness in Spain 4.3.2  Romania and Cultural Change 4.3.3  Professional Training and the Case of Croatia 4.3.4  Implementing Inclusiveness in a Federal State: Germany 4.3.5  Addressing Exclusion in Australia 4.3.6  Italy and the Importance of Targeted Education 4.3.7  Equality of Opportunities in Finland 4.4  Conclusion References

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Abstract  The international law framework for inclusive education compels States that are parties to the Convention on the Rights of Persons with Disabilities (‘CRPD’) to incorporate difference into the education system. A comparative analysis of select countries demonstrates that the adoption of numerous regulatory instruments at the domestic level, as particularly required under CRPD Article 24, is insufficient to achieve adequate inclusiveness. First, a fundamental change in societal attitudes is required, moving from segregation to a positive view of disability (more properly, differing ability). Second, regulation must be integrated by targeted measures, particularly at the local level, addressing issues such as the lack of specialised learning support and modified technology, notably as concerns intellectual disability. More generally, the appropriate delivery of educational services for ­persons with disabilities cannot be taken for granted even in those economies that

J. Kotzmann (*) · E. Griffith · J. R. Morss Law School, Deakin University, Melbourne, VIC, Australia e-mail: [email protected]; [email protected]; [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_4

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are considered most prosperous in a conventional sense. Attitudinal factors, cultural factors and institutional factors affect the adequacy of States’ compliance with their international obligations. Keywords  Disability (different ability) · Right to education · Inclusiveness · Cultural change · Professional training · Targeted education · Equal opportunities

4.1  Introduction In its first decision on the right to inclusive education, the Committee on the Rights of Persons with Disabilities (‘CteRPD’ or ‘Disabilities Committee’) found that Spain had violated the right of a boy with Down syndrome to inclusive education.1 Rubén had been enrolled in a mainstream school in León. While he had positive relations with his teachers and classmates up until 2009, these relationships deteriorated when he turned ten and entered grade four. Subsequently, allegations of ill-­ treatment and abuse by his teacher were made and Rubén began to display ‘disruptive behaviour’.2 In June 2011, despite his parents’ objections, the Provincial Directorate of Education approved Rubén’s enrolment in a special education centre. No effective investigation into the allegations of abuse was conducted and the parents’ efforts at challenging the decision to enrol Rubén in a special school were unsuccessful. Moreover, the authorities brought criminal charges against Rubén’s parents for refusing to send him to a specialised school. In 2017, Rubén and his father lodged a complaint with the Disabilities Committee. In its September 2020 Calleja Loma v Spain decision on the matter, the CteRPD concluded that Spain had violated Rubén’s right to inclusive education because it had failed to assess his individual requirements or to take reasonable measures that would allow Rubén to remain in mainstream education.3 That the Disabilities Committee’s decision found Spain in violation of the right to inclusive education is somewhat ironic. It was Spain, in cooperation with the United Nations (‘UN’) Educational, Scientific and Cultural Organisation (‘UNESCO’), which organised the World Conference on Special Needs Education in 1994.4 This Conference led to the Salamanca Statement and Framework for Action on Special Needs Education (‘Salamanca Statement’) which has been lauded 1  Office of the High Commissioner on Human Rights (OHCHR), ‘Spain Violated the Inclusive Education Right of a Child With Disabilities, UN Committee finds’, 21 September 2020, https:// www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=26263&LangID=E. 2  Ibid. 3  CteRPD, Opinion Approved by the Committee under Article 5 of the Optional Protocol, Communication No. 41/2017, UN Doc. CRPD/C/23/D/41/2017, 30 September 2020, Google Chrome translation, ‘Calleja Loma v. Spain’. 4  The Salamanca Statement and Framework for Action on Special Needs Education, 2018, https:// www.right-to-education.org/resource/salamanca-statement-and-framework-action-specialneeds-education.

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as ‘arguably the most significant international document that has ever appeared in the field of special education’ and which endorsed the concept of inclusive education.5 Since the Salamanca Statement, the concept of inclusive education has become a major influence in international human rights law.6 The right to inclusive education is expressly recognised in art 24 of the UN Convention on the Rights of Persons with Disabilities7 (‘CRPD’) as well as Sustainable Development Goal (‘SDG’) 4 of 2015.8 Rather than a stand-alone right, it constitutes an elaboration of the broader right to education9 set out in various international documents, including the 1966 International Covenant on Economic, Social and Cultural Rights (‘ICESCR’).10 The international law framework for inclusive education obliges States that are parties to the CRPD to incorporate difference into the education system.11 The purpose of this is to assist people with disabilities to learn those skills necessary to participate effectively in a free society while enabling learners without disabilities to benefit from the experiences of students from diverse backgrounds.12 This chapter compares the progress of implementation of the right to inclusive education for people with disabilities, or, more properly, differing abilities, in different States. In this respect, it seeks to identify some strategies available to States working to incorporate difference in their education systems and the likely challenges that they may face in this respect. The selection of States was based on each being a party to the CRPD; each attempting to implement its obligations in relation to inclusive education; and each ensuring the representation of different socioeconomic conditions and different geographic areas. The first part of the chapter discusses the legal basis for the right to education of persons with disabilities, including the specific requirements of inclusive education. In the second part we evaluate the attempts of various States to implement the right to a quality, inclusive education. The conclusion includes some observations on the ways in which States might further improve their delivery of the right to inclusive education and on the reasons underlying variability in progress across a range of jurisdictions.

5  Mel Ainscowa, Roger Sleeb and Marnie Best, ‘Editorial: The Salamanca Statement: 25 Years On’ (2019) 23(7–8) International Journal of Inclusive Education 671, at 671. 6  Ibid. 7  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. 8  General Assembly, Transforming our World: the 2030 Agenda for Sustainable Development, GA Res 70/1, 70th sess, agenda items 15 and 116, UN Doc A/RES/70/1, 25 September 2015, para. 59, Goal 4. 9  Office of the High Commissioner for Human Rights, Thematic Study on the Right of Persons with Disabilities to Education, 25th sess., Agenda Items 2 and 3, UN Doc A/HRC/25/29, 18 December 2013, at paras 3 and 6. 10  Opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976, Article 13. 11  OHCHR, Thematic Study on the Right of Persons with Disabilities to Education, 25th sess., Agenda Items 2 and 3, UN Doc A/HRC/25/29, 18 December 2013, at para. 18. 12  CteRPD, General Comment No. 4 on the Right to Inclusive Education, UN Doc. CRPD/C/GC/4, 25 November 2016, at para. 2.

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Our purpose here is to focus on a comparative analysis of compliance with an international agreement. The even bigger picture must not be entirely overlooked. The defining of some of our fellow citizens as having a disability, however benign the consequences or at least the intentions of such a definition, always raises questions of power and privilege among those who define themselves as ‘able’ and who design the world accordingly.13 It is perhaps unlikely that compliance alone will resolve all the uncomfortable issues of respect and of justice that are enlivened by these genres of difference among us, yet it will make an essential contribution, assisting us in keeping our feet firmly on the ground.

4.2  The Right to Education of Persons with Disabilities 4.2.1  International Instruments A number of international legal instruments recognise and protect the human right to education for all persons, including those with disabilities. For example, the 1960 Convention against Discrimination in Education, sponsored by UNESCO, details the right to education and obliges State Parties to prevent (and, to the extent possible, eliminate) discrimination in education and to promote equality of educational opportunity and treatment.14 Similarly, Article 13 of the ICESCR sets out ‘the right of everyone to education’ while Article 2(2) requires States Parties to guarantee the exercise of the right without discrimination. Specifically in relation to children, Article 28 of the1989 UN Convention on the Rights of the Child (‘CRC’)15 recognises the right of all children to education, while Article 2(1) mandates that State parties respect and ensure the rights set out in the CRC to each child without discrimination, regardless of their ability. Moreover, Article 23(3) requires State parties to ensure that assistance is provided to children with disabilities for the purposes of securing their education.16 The right to education for people with disabilities has been acknowledged as a right to inclusive education.17 More particularly, inclusive education is recognised as ‘the most appropriate modality for States to guarantee universality and

 For critical perspectives on dis/ability in society, see for example Dan Goodley, Dis/Ability Studies: Theorising Disablism and Ableism (Routledge, 2014); Dan Goodley and Katherine Runswick-Cole, ‘Becoming Dishuman: Thinking About the Human Through Dis/Ability’ (2016) 37 Discourse: Studies in the Cultural Politics of Education 1. Also see Martha Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Harvard University Press, 2006) at 96. 14  Opened for signature 14 December 1960, 429 UNTS 93, entered into force 22 May 1962. 15  Opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. 16  In relation to the right to education, see also the World Declaration on Education for All (1990); Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) Rule 6. 17  Office of the High Commissioner for Human Rights, Thematic Study (2013) at para. 3. 13

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non-­discrimination in the right to education’.18 The Salamanca Statement constituted a significant step in terms of endorsing inclusive education for people with disabilities, and is informed by a perceived need to ‘work towards “schools for all” – institutions which include everybody, celebrate differences, support learning, and respond to individual needs’.19 As the first binding international instrument to expressly recognise the right of persons with disabilities to an inclusive education system, however, the CRPD is the most important statement in this respect.20 CRPD Article 24 sets out a right of persons with disabilities to education without discrimination and on the basis of equal opportunity. Article 24(1) specifically imposes an obligation on State Parties to ensure an inclusive education system. More recently, the right of people with disabilities to quality, inclusive education has been recognized in the United Nation’s 2030 Agenda for Sustainable Development, in which SDG 4 obliges States to ‘to ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’.21

4.2.2  Requirements of Inclusive Education The purpose of inclusive education is to ensure that educational institutions are designed and operate to meet individual student needs, regardless of what those needs might be. Educational institutions should be able to assist all students, ‘regardless of their physical, intellectual, social, emotional, linguistic or other conditions’.22 To achieve this, inclusive education systems need to adopt ‘a child-centred pedagogy capable of successfully educating all children, including those who have serious disadvantages and disabilities’.23 In other words, educational institutions need to employ teaching practices that are directed towards enabling the individual student to reach their potential, rather than requiring the student to meet the pre-defined expectations of the educational institution. There are of course many different forms of child-centred pedagogy and many different understandings of what individual ‘potential’ means in concrete terms. As well, certification of educational

 Ibid.  UNESCO, The Salamanca Statement and Framework for Action on Special Needs Education (1994) Preface. 20  CteRPD, General Comment No. 4 on the Right to Inclusive Education, UN Doc. CRPD/C/GC/4, 25 November 2016, at para. 2. 21  General Assembly, Transforming our World (2015) at para. 59, Goal 4. See also Dimitris Anastasiou, Michael Gregory and James M Kauffman, ‘Article 24: Education’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 656; Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 111 ff. 22  UNESCO, The Salamanca Statement (1994) Introduction, at 3. 23  Ibid. 18 19

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achievement both for learners and for the accountability of educational systems, cannot be entirely displaced. Inclusive education can be contrasted with other practices that have been employed by educational institutions in relation to people with disabilities.24 Exclusion occurs where an educational institution directly or indirectly prevents people from accessing education.25 Segregation happens where people with disabilities are educated in settings designed to respond to students’ impairments but are sequestered from those students without disabilities.26 Such a setting might be referred to as a special or specialised school. Historically, special education evolved from the gradual recognition of educational needs in children and young persons in settings outside of mainstream primary and secondary education such as health-care settings. It is important to recall that special education in the later decades of the twentieth century was itself an advance on the medically dominated approach, focusing on physical care, that prevailed to that point. Under an approach of integration, students with disabilities are placed in mainstream educational institutions with the objective of enabling them with appropriate support to adjust to the requirements of a mainstream educational setting.27 The obligation in CRPD Article 24(1) to provide quality, inclusive education has significant consequences for States that have traditionally educated students with disabilities in specialised schools. States that are parties to the CRPD are required to ensure that education is inclusive at all levels, including preschool, primary, secondary and higher education as well as vocational training and extra-curricular activities.28 Further, States are required to consult with and involve people with disabilities in the development and implementation of inclusive education policies.29 Thus, a transition from specialised education to inclusive education for people with disabilities involves a significant transformation in ‘culture, policy and practice’ in all educational settings.30 The Disabilities Committee has outlined the manner in which inclusive education is to be understood and the core features of inclusive education.31 The CteRPD’s General Comment on the Right to Inclusive Education states that inclusive education is to be appreciated as ‘[a] fundamental human right of all learners’, a principle that values individuals and responds to their requirements and a way to realise other human rights.32 Further, inclusive education also represents the ‘result of a process of continuing and proactive commitment to eliminating barriers impeding the right

 CteRPD, General Comment No. 4 on the Right to Inclusive Education, UN Doc. CRPD/C/GC/4, 25 November 2016, at para. 11. 25  Ibid. 26  Ibid., at para. 11. 27  Ibid. 28  Ibid, at para. 8. 29  Ibid, at para. 7. 30  Ibid, at para. 9(11). 31  Ibid. 32  Ibid. at para. 10. 24

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to education’.33 The core features of inclusive education include its holistic nature, in that it involves a ‘whole systems’ and ‘whole educational environment’ approach across educational ‘culture, policies and practices’34 and a ‘whole person’ approach under which all learners are considered capable and emphasis is placed on learners’ abilities and goals so as to provide a ‘personalized educational response’.35 Core features also include supporting teachers to contribute to inclusive learning environments;36 the appreciation of diversity, including means to prevent abuse and bullying;37 supporting learning-friendly environments;38 and the monitoring and evaluation of educational institutions to ensure that learning is truly inclusive.39

4.3  E  xamination of Implementation of the Right to Inclusive Education As discussed, the successful application of CRPD obligations requires a departure from the segregated model of special education with a conscious move to genuine inclusivity within mainstream educational institutions. The following analysis demonstrates that, in practice, States have varied significantly in their efforts to achieve this objective. The selection of States has been made with a view to appraising a range of jurisdictions with varying historical, cultural and economic situations and a diversity of constitutional structures.

4.3.1  Inclusiveness in Spain The following analysis of Spain’s compliance with CRPD obligations provides context to the Disabilities Committee decision in Calleja Loma v Spain.40 Spain has endeavoured to embrace inclusive education in its legislative materials for many decades. With awareness of the need for, and right to, inclusive education initiated by the National Institute of Special Education in the 1970s,41 the 1978  Ibid.  Ibid, at para. 12(a)–(b). 35  Ibid, at para. 12(c). 36  Ibid, at para. 12(d). 37  Ibid, at para. 12(e). 38  Ibid, at para. 12(f). 39  Ibid, at para. 12(i). 40  Calleja Loma v Spain (2020). 41  Shaila Rao, María Cristina Cardona Moltó and Esther Chiner, ‘Special Education Today in Spain’ in Anthony F. Rotatori, Jeffrey P. Bakken, Sandra Burkhardt, Festus E. Obiakor, Umesh Sharma (eds.), Special Education International Perspectives: Practices Across the Globe (Emerald Books, 2014) 147, at 148. 33 34

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Constitución Española (‘Spanish Constitution’) expressly guarantees the right to free and compulsory education for all.42 The Education Act 2006 and subsequent Act on the Improvement of the Quality of Education 2013 provide numerous relevant principles to which the Spanish education system is required to adhere, including equity, quality, inclusion and universal accessibility to education.43 The most recent data available provides that 83.4 per cent of children with disability are enrolled in mainstream schools.44 Though this number is substantial, in its most recent concluding observations, the CteRPD noted inclusive education as an area of concern,45 a sentiment that was echoed in the Committee on the Rights of the Child’s (‘CteRC’) 2018 Concluding Observations.46 Despite this legislative framework, implementation is somewhat problematic, with Spain facing the challenge of ‘promot[ing] more inclusive practices where students interact regardless of their abilities’.47 While some schools actively involve families to ensure true inclusivity and reasonable accommodation of a child’s requirements, there are reports of complete parental exclusion from all school dealings and of children not receiving required education support in any form.48 Children who are assessed as having special educational needs are enrolled in mainstream schools and ‘only when it is objectively established that the needs of these pupils cannot be properly met in a mainstream school’ is the option of a special school explored.49 However, in direct contravention of State obligations under CRPD Article 24, parents may be excluded from this assessment, often resulting in legal conflicts similar to that considered by the Disabilities Committee in Calleja Loma v. Spain. With university requirements and curriculums for teaching qualifications implemented at the regional level, training in the provision of special education can be somewhat irregular.50 Teacher training for special needs education carried out within the recommended Spanish framework has been found to offer an ‘inadequate preparation of future teachers with regard to the performance of their duties as the main  Constitution 1978 (Spain) Article 27.  Organic Act on Education 2006 (Spain); Improvement of the Quality of Education Act 2013 (Spain). 44  Universities for Labour Inclusion of People with Intellectual Disabilities, Education and Employment for Persons with Intellectual Disabilities in Europe: Psychological and Legal Perspectives, Report (2019) at 9. 45  CteRPD, Concluding Observations on the Combined Second and Third Periodic Reports of Spain, UN Doc. CRPD/C/ESP/CO/2–3, 13 May 2019, at para. 45. 46  CteRC, Concluding Observations on the Combined Fifth and Sixth Periodic Reports of Spain, UN Doc. CRC/ C/ESP/CO/5–6, 5 March 2018, at para. 4. 47  Edurne Chocarro De Luis, ‘Inclusive Education in Spain: Promoting Advocacy by Legislation’ (2016) 31(2) Support for Learning 164, at 175. 48  Rao, ‘Special Education Today in Spain’ (2014) at 173–174. 49  European Agency for Special Needs and Inclusive Education, Legislation and Policy, Country Information: Spain (Web Page), 2020, https://www.european-agency.org/country-information/ spain/legislation-and-policy. 50  Rao, ‘Special Education Today in Spain’ (2014) at 170. 42 43

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agents of… [inclusive education]’.51 Further, a recent study found that reductions in education funding have resulted in a commensurate reduction in the number of support teachers, auxiliary staff and professionals available to assist Spanish university students with disabilities.52 Despite these challenges, further progress is anticipated. Spain has recently initiated significant reform through a proposed Organic Educational Law which will override current legislation and amongst other key issues will address segregation, inclusion and diversity in schools.53 At the time of writing, the new law had Government approval. With predictions of a ‘complete overhaul’ of the education system, there are hopes that this renewed approach will remedy the shortfalls of CRPD compliance.54

4.3.2  Romania and Cultural Change Review of Romania’s progress in relation to the CRPD obligations is provided here in light of the ‘large disparities in access to education’55 in that State and ongoing assistance from the United Nations Children’s Emergency Fund (‘UNICEF’) to correct this imbalance. Recent legislation to promote equal access to education and protect persons with disability from discrimination56 has laid the foundations for positive social change in Romania. Accompanied by the National Strategy – A Society Without Barriers for People with Disabilities,57 Romania’s steps toward inclusivity in education have been significant, although considerable improvement in practical implementation is still required. Despite the availability of inclusive education opportunities in some Romanian mainstream schools, segregated special schools remain prominent. Promisingly, enrolment numbers at special schools have reduced drastically in the last 15 years.58

 Manuel López-Torrijo and Santiago Mengual-Andrés, ‘An Attack on Inclusive Education in Secondary Education. Limitations in Initial Teacher Training in Spain’ (2015) 4(1) New Approaches in Educational Research 9, at 15. 52  Angela Genova, ‘Barriers to Inclusive Education in Greece, Spain and Lithuania: Results from Emancipatory Disability Research’ (2015) 30(7) Disability and Society 1042, at 1047. 53  Organic Act of Modification of the LOE 2020 (Spain). 54  European Agency for Special Needs and Inclusive Education, Legislation and Policy (2020). 55  UNESCO, Education for All 2015 National Review Report: Romania, Report, 19–22 May 2015. 56  Constitution 1991 (Romania); Law no. 448/2006 2008 (Romania); Social Inclusion Strategy of Persons with Disabilities 2014–2020 (Romania). 57  Government of Romania, National Strategy  – A Society Without Barriers for People with Disabilities 2015–2020, Report, 14 October 2015. 58  Human Rights Council, National Report Submitted in Accordance with Paragraph 5 of the Annex to Human Rights Council Resolution 16/21, UN Doc. A/HRC/WG.6/29/ROU/1, 27 December 2018, at 18. 51

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UNICEF’s Quality Inclusive Education package has assisted children with disabilities in accessing and regularly participating in school.59 Established in 2018 in conjunction with relevant Romanian government departments, the Quality Inclusive Education package has, to date, prevented 83 per cent of at-risk children from dropping out of school.60 Compounding difficulties in achieving true inclusivity is conflicting research on teacher attitudes. Some teachers have been found to have a positive and accepting attitude towards students with disability being included in mainstream schools and believe that, generally, such students are able to make good progress.61 Conversely, a study of itinerant teachers found that inadequate staffing results in each child only receiving one hour of specialised attention per week, and that many mainstream teachers still see students with disability as a ‘burden’.62 Romania faces its own set of unique challenges given its history. As a country that has faced political unrest and social revolution in relatively recent times, it has been said that there is much work to be done in shaping a positive view of persons with disability that is more in line with ‘the standards of advanced nations with a tradition in educating learners with unique abilities.’63

4.3.3  Professional Training and the Case of Croatia Croatia’s Kindergarten Sopot has been classified as a professional development centre to assist in the implementation of inclusive education for early learners.64 This program was recognised by the independent European Agency for Special Needs and Inclusive Education for its progress in developing a ‘clear mission of inclusiveness.’65 In light of this considerable development, Croatia is included in this review of States Parties.

  UNICEF, Quality Inclusive Education Package, Report, https://www.unicef.org/romania/ quality-inclusive-education-package. 60  Ibid. 61  Nicoleta Lupu, ‘Teacher’s Opinions Towards the Integration of Students with Special Needs in Mass Education’ (2017) 10(59) Bulletin of Transilvania University of Braşov Series VII: Social Sciences and Law 29, at 34. 62  Ana-Maria Bolborici and Diana-Cristina Bódi, Issues of Special Education in Romanian Schools (2018) 1(3) European Journal of Education 135, at 139. 63  Gabriela Walker, ‘Inclusive Education in Romania: Policies and Practices in Post-Communist Romania’ (2010) 14(2) International Journal of Inclusive Education 165, at 172. 64  Professional Development Centre, Professional Development Centre of Kindergarten Sopot, Kindergarten Sopot (2014) http://www.vrtic-sopot.zagreb.hr/default.aspx?id=63. 65  European Agency for Special Needs and Inclusive Education, Case Study, Kindergarten Sopot Centre of Excellence: an inclusive approach for children with disabilities in early years and pre-­ primary education in Croatia, 2020, https://www.inclusive-education-in-action.org/case-study/ kindergarten-sopot-centre-excellence-inclusive-approach-children-disabilities-early. 59

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Croatia has taken a proactive approach to enacting legislative reform in an effort to promote the rights of persons with disability, and in particular, the right of access to education for children with disability. Reflected in the Ustav Republike Hrvatske (‘Constitution of the Republic of Croatia), the development of national policy frameworks66 and swift ratification of the CRPD, Croatia has made significant ideological progress in creating inclusive education opportunities for all children. In practice however, these ambitious goals have not yet been met.67 Although domestic policy requires that children with disability are given preference when enrolling in early stages of school,68 research indicates that this right is frequently denied, with lack of staff and space used as justification.69 Parents of children with disability who were refused access reported a lack of school and government support when attempting to secure enrolment.70 For children who overcame these obstacles, inclusion in classroom activities was often minimal.71 These findings indicate that the progressive approach taken in Kindergarten Sopot’s professional development centre is an exception in inclusive education, rather than the Croatian norm. The Disabilities Committee has expressed concern regarding the low number of students with disabilities that graduate from secondary education, and that accommodations made for students in the mainstream system are ‘insufficient’.72 Serious concerns relating to harmful attitudes of children at primary level were revealed at the European Court of Human Rights, where the repeated harassment and assault of a man with disability by children under the age of criminal liability were not dealt with by school authorities or the State,73 despite the conduct having been found to be in contravention of the European Convention on Human Rights (‘ECHR’).74

 Government of the Republic of Croatia, National Strategy for Equalization of Opportunities for Persons with Disabilities 2017–2020, Report, April 2017. 67  Katarzyna Cwirynkalo, Tamara Kisovar-Ivanda, Jess L. Gregory, Agnieszka Zyta, Aleksandra Arciszewska and Smiljana Zrilic, ‘Attitudes of Croatian And Polish Elementary School Teachers Towards Inclusive Education of Children with Disabilities’ (2017) 53 Croatian Journal of Rehabilitation Research 252. 68  Preschool Education Act 2013 (Croatia) art 20. 69  Marina Milić Babić, Sara Tkalec and Leah Powell Cheatham, ‘The Right to Education for Children with Disabilities from the Earliest Age’ (2018) 20(1) Croatian Journal of Education 233, at 239. 70  Ibid. 71  Ibid, at 242. 72  CteRPD, Concluding Observations on the Initial Report of Croatia, UN Doc CRPD/C/HRV/ CO/1, 17 April 2015, at 35. 73  Đordević v. Croatia, European Court of Human Rights, Chamber, Application No. 41526/10, 24 July 2012. 74  Convention for the Protection of Human Rights and Fundamental Freedoms, opened for signature 4 November 1950, 213 UNTS 221, entered into force 3 September 1953, Articles 3, 8, 13. 66

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Upon reaching tertiary education, students with disabilities are also likely to face many barriers to physical, social and educational support.75 Some improvements have been made in recent years, with numerous universities establishing dedicated coordinators to assist students with disability in accessing adequate and individualised supports,76 although research suggests that coordinators are failing to meet student expectations.77 The CteRC recognises that a significant proportion of students with disabilities in the primary school age range were integrated into the mainstream system.78 However, teaching staff report difficulties in creating adequately inclusive supports such as specific ‘education programs for students with disabilities … [and the] ability to adjust to specific student’s needs during examinations’, affirming the need for ongoing effective teacher training and professional development if Croatian mainstream schools are to meet the goals set out within relevant policies.79 The Croatian education system shows significant promise in its ability to provide a truly inclusive schooling system for children with disabilities. In light of the existing legal and regulatory framework, and improvements in societal attitudes and teacher awareness of the needs of children with disability,80 it is likely that the coming years will see great improvements in the implementation of inclusive education in this State.

4.3.4  Implementing Inclusiveness in a Federal State: Germany The UNESCO Global Education Monitoring Report Summary on disabilities and education identifies that, as per CRPD Article 33, Germany has established an independent monitoring agency to supervise and report on the country’s implementation

 Marina Milić Babić, and Monica Dowling, ‘Social Support, the Presence of Barriers and Ideas for the Future from Students with Disabilities in the Higher Education System in Croatia’ (2015) 30(4) Disability and Support 614, at 620. 76  See, for instance, University of Zagreb, ‘Office for Student with Disabilities’ (Web Page) http:// www.unizg.hr/homepage/international-exchange/exchange-students/student-services/ office-for-students-with-disabilities. 77  Babic and Dowling, ‘Social support’ (2015) at 623. 78  CteRC, Consideration of Reports Submitted by States Parties under Article 44 of the Convention, UN Doc. CRC/C/HRV/3–4, 25 October 2013. 79  Zrinjka Stančić, Lelia Kiš-Glavaš, Branko Nikolić, ‘Some Indicators of Satisfaction with the Support System for Students with Disabilities in Secondary Education in Croatia’ (2015) 18(1) Interuniversity Electronic Journal of Teacher Training 123, at 132. 80  Katarzyna Cwirynkalo, Tamara Kisovar-Ivanda, Jess L. Gregory, Agnieszka Zyta, Aleksandra Arciszewska and Smiljana Zrilic, ‘Attitudes of Croatian and Polish Elementary School Teachers Towards Inclusive Education of Children with Disabilities’ (2017) 53 Croatian Journal of Rehabilitation Research 252. 75

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of the CRPD.81 However, Germany has been identified as having more than 80 per cent of its special education needs students placed within a segregated setting.82 Here, the conflicting approach to meeting inclusive education obligations is examined. Despite its reputation as possessing one of the best education systems in the world,83 Germany’s attempts to include students with disabilities in mainstream schooling remain inconsistent. The German right to education for children with disability is affirmed at the federal level,84 however practical implementation of education is governed at the level of the Länder (‘States’), resulting in 16 varied approaches to inclusivity. Although each State is required to act within the constraints of the Grundgesetz (‘Basic Law’) and the numerous ratifications of international instruments on the rights of persons with disability, implementation is not uniform. While there has been an increasing trend in most German States to move towards an inclusive education system, the shift has been gradual and somewhat restrained. Germany’s long-established practice of segregated special schools remains the norm in many States,85 with enrolment numbers continuing to rise.86 Domestic government bodies have raised concerns that this disconnected approach ‘results in unequal educational opportunities due to differing school codes and framework conditions’.87 Upon canvassing disability policy organisations, Germany’s National CRPD Monitoring Mechanism found that ‘a great need for action was indicated, especially in the school sector’.88 The first state review procedure carried out by the same organisation found many areas lacking in terms of CRPD compliance, finding in particular that ‘the segregating school system should be reduced’.89 The National Coalition Germany reported that only 39 per cent of children with disability attended  UNESCO, Global Education Monitoring Report Summary on Disabilities and Education, UN Doc. ED/GEM/MRT/2018/SN/1 (2018) at 3. 82  Ibid., at 12. 83  Susanne von Below, Justin J.W. Powell, and Lance W. Roberts, ‘Educational Systems and Rising Inequality: Eastern Germany after Unification’ (2013) 86(4) Sociology of Education 362, at 365. 84  Grundgesetz für die Bundesrepublik Deutschland [Basic Law for the Federal Republic of Germany] (Germany) Article 3  – R1, Sozialgesetzbuch XII  – Sozialhilfe [Book Twelve of the Social Code] (Germany). 85  Justin J.W. Powell, Benjamin Edelstein and Jonna M. Blanck, ‘Awareness-raising, Legitimation or Backlash? Effects of the UN Convention on the Rights of Persons with Disabilities on Education Systems in Germany’ (2016) 14(2) Globalisation, Societies and Education 227, at 230. 86  Ibid., at 239. 87  National Coalition Germany, Implementation of the UN Convention on the Rights of the Child in Germany (5th/6th Supplementary Report to the United Nations, 6 June 2019) at 42. 88  Deutsche Institut für Menschenrechte, Great Need for Action in Implementing the UN Convention on the Rights of Persons with Disabilities in North Rhine-Westphalia, Press Release, 25 April 2018, https://www.institut-fuer-menschenrechte.de/monitoring-stelle-un-brk/meldung/ article/pressemitteilung-grosser-handlungsbedarf-bei-der-umsetzung-der-un-­behindertenrechtsko nvention-­in-nrw. 89  Deutsche Institut für Menschenrechte, Final Remarks from 2015, Monitoring Agency CRPD-UN, State Review 2018–2021, Report (2015) https://www.institut-fuer-menschenrechte.de/monitoring-­ stelle-­un-brk/staatenpruefung-2018-2021/abschliessende-bemerkungen-von-2015. 81

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inclusive mainstream schools.90 Further cementing the need for the departure from segregated schooling, the CteRC advised of Germany’s need to perform ‘[a]ll necessary legislative and structural reforms to ensure that the right to inclusive education is guaranteed to children with disabilities’.91 An undisputed move toward a truly inclusive education system in Germany will likely require a dramatic shift in entrenched societal attitudes not only in promoting inclusive education, but also in promoting an inclusive society. There are anecdotal reports of parents removing their children from mainstream schools that include students with disability,92 and until as recently as 2019, some persons with disability were precluded from voting.93 With a segregated and institutionalised system so ingrained in culture and history, if Germany is to make genuine change for persons with disability, the challenge will be to establish the physical and social frameworks that allow for such children to be effectively included in mainstream settings without detriment to individual progress.

4.3.5  Addressing Exclusion in Australia Australia’s commitment to providing inclusive education opportunities has recently been closely examined through both a (federal) Senate Enquiry94 and Royal Commission.95 This independent scrutiny and the benefit of examining CRPD ­obligations from varied geographical regions provides cause to include review of Australia’s progress. Despite legislative efforts96 and federal commitments to multiple international instruments,97 Australia has not yet reached a reasonable standard of fair and

 National Coalition Germany, Implementation (2019) at 42.  CteRC, Concluding Observations on the Combined Third and Fourth Periodic Reports of Germany, UN Doc. CRC/C, 1875th mtg., UN Doc. CRC/C/DEU/CO/3–4, 31 January 2014, 51(b). 92  Elizabeth Schumaker, ‘How Germany Is Failing Disabled And Special Needs Students’, DW Akademie (News Post), 2019, https://www.dw.com/en/how-germany-is-failing-disabled-andspecial-needs-students/a-47825546. 93  Bundesverfassungsgericht [German Constitutional Court], 2 BvQ 22/19, 15 April 2019 reported in (2019) I BGBl 368. 94  Senate Community Affairs Committee, Parliament of Australia, Violence, Abuse and Neglect against People with Disability in Institutional and Residential Settings, Including the Gender and Age Related Dimensions, and the Particular Situation of Aboriginal and Torres Strait Islander People with Disability, and Culturally and Linguistically Diverse People with Disability, Report, November 2015. 95  Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Interim Report, October 2020, vol. 1. 96  Disability Discrimination Act 1992 (Cth.); Disability Services Act 1986 (Cth.); Disability Standards for Education 2005 (Cth.). 97  CRPD, entered into force 13 December 2006; CRC, entered into force 2 September 1990; ICESCR, entered into force 3 January 1976; Economic and Social Commission for Asia and the Pacific, Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific, UN ESCAP, UN Doc. ST/ESCAP/2648, November 2012. 90 91

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inclusive education for persons with disability. Rigorous involvement in the negotiation phase of the development of the CRPD to insist that signatories commit to the highest possible standard of inclusive education98 has failed to compel Australia to create adequate opportunities for inclusive education. Since ratification, Australia has not only fallen short of CRPD requirements but has also seen a notable increase in education segregation99 and acted in direct conflict with UN requirements that signatories must impose laws to ‘prohibit rejection from mainstream schools on the basis of disability’.100 The Australian disability education system continues to segregate students with disability into special schools, or into separate classrooms within mainstream schools.101 A significant proportion of students are placed in such settings, many of whom experience more difficulty than those who attended mainstream classes only.102 Australia’s segregated schools also failed to provide any support or special arrangement such as modified technology or tuition to 11 per cent of enrolled children.103 Genuinely inclusive education must extend beyond the classroom to encompass the entire schooling experience. The 2015 Senate Enquiry ‘Violence, Abuse and Neglect Against People with Disability in Institutional and Residential Settings’ exposed numerous reports of substantial abuse, neglect and serious assault faced by children with disabilities within mainstream school settings. Also highlighted was the severe lack of appropriate transportation to and from school available to children with disabilities.104 Restrictive practices were found to still be in place in many establishments, including reports of children being physically restrained in chairs, and being held in locked rooms and containment areas.105 A recent Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability confirmed that ‘no Australian jurisdiction has expressly recognised that all students with disability have a right, in law, to inclusive

 Emily Cukalevski and Cátia Malaquias, ‘A CRPD Analysis of NSW’s Policy on the Education of Students with Disabilities – A Retrogressive Measure That Must be Halted’ (2019) 25(2) Australian Journal of Human Rights 232. 99  CteRPD, Committee Experts Express Concerns about Slow Progress in the Implementation of the Convention, United Nations Human Rights Office of the High Commissioner (News and Events), 13 September 2019, https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews. aspx?NewsID=24989&LangID=E. 100  OHCHR, Thematic Study on the Right of Persons with Disabilities to Education, 25th sess., Agenda Items 2 and 3, UN Doc. A/HRC/25/29, 18 December 2013, at 26. 101  Australian Bureau of Statistics, Young People with Disability, 2012, Catalogue No 4427, 30 April 2014. 102  Australian Bureau of Statistics, Profiles of Disability Australia, 2009, Catalogue No 4429.0, 27 June 2012. 103  Australian Bureau of Statistics, Young People with Disability, 2012 (2014). 104  Senate Community Affairs Committee, Parliament of Australia, Violence, Abuse and Neglect (2015) at 63. 105  Ibid., at 105. 98

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education.’106 Reports of gatekeeping practices including ‘schools refusing to enrol a child with disability, offering part-time enrolment only, encouraging enrolment in special/segregated education settings or encouraging home schooling’ were submitted to and accepted by the Royal Commission in its report.107 The Disabilities Committee has raised concerns over Australia’s slow progress in implementing the CRPD,108 a lack of ‘specific policies and programmes that focused on promoting the rights of children with disabilities,109 as well as ongoing concerns over the ‘significant increase in students with disabilities experiencing a segregated education’.110 The Committee also identified that, regardless of the potential merits of the Australia’s Disability Standards for Education Act 2005 (Cth),111 children with disabilities educated in mainstream schools still ‘receive a substandard education due to lack of reasonable accommodation [and] secondary school completion rates for students with disabilities are about half of those for people without disability’.112 Despite legislative and treaty obligations, Australia is unlikely to provide reasonable access to inclusive education for all children unless significant reform is made to address these issues.

4.3.6  Italy and the Importance of Targeted Education In the ‘Towards Inclusion in Education: Status, Trends and Challenges’ Report on the progress made by the Salamanca Statement in the 25 years since its establishment, Italy is identified as showing promising development in its pursuit for inclusive education.113 With recent legislative amendments to improve inclusivity in education, Italy is included for review in this Chapter. Throughout its modern history, Italy has shown great promise as it strived for a truly inclusive education system for children with disability through careful enactment of laws promoting equality114 and commitment to relevant international instruments. Italy’s ratification of the CRPD in 2009 marked a solidification of its already significant commitments to the provision of inclusive education. Indeed, Italy is  Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Interim Report, October 2020, vol. 1, at 226. 107  Ibid., at 230. 108  CteRPD, Concluding Observations on the Initial Report of Australia, UN Doc. CRPD/C/AUS/ CO/1, 21 October 2013, at para. 45. 109  CteRPD, Committee Experts Express Concerns (2019). 110  CteRPD, Concluding Observations (2013) at para. 45. 111  Disability Standards for Education Act 2005 (Cth.). 112  CteRPD, Concluding Observations (2013) at para. 45. 113  UNESCO, Towards Inclusion in Education: Status, Trends and Challenges: The UNESCO Salamanca Statement 25  Years On, Report, October 2020, AT 19 https://unesdoc.unesco.org/ ark:/48223/pf0000374246?posInSet=1&queryId=c9974527-4f92-46d0-b9f3-e0f753d20933. 114  Constitution 1948 (Italy) Article 2; Law No. 104/1992 (Italy). 106

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considered by some to be a ‘leader in the area of education for students with disabilities.’115 In terms of implementation, the statistics are impressive. In the 2017/2018 school year, 93 per cent of children with disability attended a mainstream state school, and 45 per cent of all mainstream classes had at least one student with disability.116 Students with disabilities were distributed across all grade levels.117 In Italy, segregated schools are the exception rather than the norm as is the case in many other States discussed in this chapter. The European Agency for Special Needs and Inclusive Education reported that 99.12 per cent of students with special education needs are educated in inclusive, mainstream schools.118 In 2014, the Italian government renewed its approach to the education system with the Reform of the National Education and Training System119 to further cement its commitment to providing inclusive education. Despite these positive frameworks, the practicalities of maintaining this high level of inclusivity have not been without their problems. Although legislation is mandated at a federal level, the implementation of inclusive education is governed at a regional level, and at times, responsibility falls to the individual school.120 This has, in certain circumstances, led to instances where conflicting laws prevented schools from being able to ‘respond to recipients’ actual needs’.121 In this respect, the Constitutional Court has held that the legislator’s ‘discretion is not absolute and is limited by the respect of an untouchable core of guarantees for those concerned’122 in what appears to be an attempt to prevent such conflicts. There have been reports of issues faced by teachers in attempting to adhere to the high legislative standards expected of schools. Research indicates that, in practice, inclusion has been ‘fraught with difficulties, one of which is the extent to which classroom teachers feel they are equipped and should be responsible for the teaching of children with… [special education needs]’.123 Research also shows that  Arlene S. Kanter, Michelle L. Damiani, and Beth A. Ferri, ‘The Right to Inclusive Education Under International Law: Following Italy’s Lead’ (2014) 17(1) Journal of International Special Needs Education 21, at 25. 116  Ministry of Education, School, Online Data on Students with Disabilities for the Year 2017/2018, h t t p s : / / w w w. m i u r. g ov. i t / w e b / g u e s t / - / s c u o l a - o n - l i n e - i - d a t i - s u g l i - s t u d e n t i - c o n disabilita-riferiti-all-anno-2017-20-1. 117  Ibid. 118  European Agency for Special Needs and Inclusive Education, European Agency Statistics on Inclusive Education: 2018 Dataset Cross-Country Report (2018) at 88. 119  Law No. 107/2015 (Italy). 120  Delia Ferri, ‘Unveiling the Challenges in the Implementation of Article 24 CRPD on the Right to Inclusive Education. A Case-Study from Italy’ (2017) 7(1) Laws 1, at 8. 121  Sara Carnovali, ‘The Right to Inclusive Education of Persons with Disabilities in Italy. Reflections and Perspectives’ (2017) 4(4) Athens Journal of Education 315, at 320. 122  Corte Costituzionale [Italian Constitutional Court], Sentence No. 80/2010. 123  Cristina Devecchi, Filippo Dettori, Mary Doveston, Paul Sedgwick and Johnston Jament, ‘Inclusive Classrooms in Italy and England: The Role of Support Teachers and Teaching Assistants’ (2012) 27(2) European Journal of Special Needs Education 171, at 174. 115

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children with disabilities still face ‘exclusion and marginalisation’ in mainstream classrooms.124 More concerning, as recently as late 2020, Italy came before the European Court of Human Rights, where it was held to be in contravention of Articles 2 and 14 of the ECHR for failing to provide specialised learning support to a child with disability in a primary school setting.125 The Court found that the authorities had ‘not sought to determine the young girl’s real needs’ to provide tailored support ‘under equivalent conditions as far as possible to those enjoyed by other children.126 This lack of support does not fit with Italy’s broad approach to inclusive education, demonstrating that, although there has been considerable progress made, there is still work yet to be done. While there appears to be a clear divide between policy and implementation, it must be noted that Italy’s approach to inclusive education is indeed worthy of commendation. However, as has been identified by many of its critics, the concept of inclusive education is not a final destination, but rather a process that requires consistent and measured attentiveness to ensure its effectiveness for those children it is working to support.127

4.3.7  Equality of Opportunities in Finland Another State recognised in the Salamanca Statement’s 25-year progress Report128 for its promising developments, Finland is consistently recognised as having one of the world’s best education systems.129 This section considers whether its outstanding performance in education extends to inclusive education. Inclusion is a recurring theme throughout Finnish policy and legislation. Not only does the Suomen perustuslaki (‘Constitution of Finland’) stipulate that all are equal under the law, but it also requires that ‘all children shall be treated equally and as individuals and they shall be allowed to influence matters pertaining to themselves to a degree corresponding to their level of development’.130 This right to equality is extended to all levels of the Finnish education system. The Basic Education Act 2018131 defines special education as that which is ‘arranged to

 Ibid, at 180.  G.L. v. Italy, European Court of Human Rights, Chamber, Application No. 59751/15, 10 September 2020. 126  Ibid., at 70. 127  Ferri, ‘Unveiling the Challenges’ (2017) at 14. 128  UNESCO, Towards Inclusion in Education (2020) 19. 129  OECD, Finland, Education at a Glance 2020, Report, September 2020, https://www.oecd-­ ilibrary.org/docserver/a236a58f-en.pdf?expires=1604571485&id=id&accname=guest&checksum =CE3D07543D7A6583D76587A34E28B79B. 130  Constitution 1919 (Finland). 131  Law 1998/628 2018 (Finland). 124 125

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students with special needs due to a disability, illness, delay in development, emotional disorder or other similar cause’.132 In response to rising rates of segregation in education, Finland enacted a comprehensive education reform in 2014.133 A key focus was for more students to receive special needs support in mainstream education rather than through special needs classes.134 As a result of this reform, all Finnish students with disabilities are now entitled to either general, intensified or special support, delivered to each student through specialised plans dependent on individual needs and abilities, with attention given to the specific teaching support required to meet these needs. Generally, ‘special educators play quite a large role in Finnish schools’,135 and are responsible for the part-time provision of special support, usually in a separate room within the mainstream school for that portion of learning. Finland’s special education model embraces the social model of disability where ‘discrimination, inferiority, and handicapism [sic] are not inevitable, natural, or unavoidable consequences of disabilities’.136 Finnish special education treats disability as having learning difficulties in an academic area … [allowing teachers to] drive access to special education intervention’.137 Research shows that these reforms were successful in reducing the number of students in segregated settings and increasing the number of students in part-time special education within mainstream schools.138 A study of Finnish teachers found that they felt they ‘had skills and knowledge to support the learning of pupils with S[pecial] E[ducation] N[eeds]’.139 Evidence suggests that the relationship between classroom teachers and special educators is proactive and constructive, resulting in ‘individual instruction and tailor-made tasks in order to help pupils achieve their goals’.140  Basic Education Act 1998 (Finland).  Finnish National Board of Education, New National Core Curriculum for Basic Education: Focus on School Culture and Integrative Approach (Document), 2016, https://www.oph.fi/sites/ default/files/documents/new-national-core-curriculum-for-basic-education.pdf. 134  Timo Kumpulainen (ed.), Finnish National Board of Education, Report (2018) at para. 34, https://www.oph.fi/sites/default/files/documents/key-figures-on-early-childhood-and-basic-­ education-­in-finland.pdf. 135  Marjatta Takala, Eva Silfver, Yvonne Karlsson and Minna Saarinen, ‘Supporting Pupils in Finnish and Swedish Schools—Teachers’ Views’ (2020) 64(3) Scandinavian Journal of Education Research 313, at 323. 136  Julie F.  Smart and David W.  Smart, ‘Models of Disability: Implications for the Counseling Profession’ (2006) 84(1) Journal of Counseling and Development 29, at 34. 137  Tiina Itkonena and Markku Jahnukainen, ‘Disability or Learning Difficulty? Politicians or Educators? Constructing Special Education in Finland and the United States’ (2010) 9 Comparative Sociology 182, at 189. 138  Jonna Pulkkinen, Eija Räikkönen, Markku Jahnukainen, and Raija Pirttimaa, ‘How do Educational Reforms Change the Share of Students in Special Education? Trends in special education in Finland’ (2019) 19(4) European Education Research Journal 364, at 379. 139  Takala et al., ‘Supporting Pupils’ (2020) at 324. 140  Ibid. 132 133

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Despite these overwhelmingly positive steps taken to ensure equal access to education for all children, Finland is yet to provide adequate opportunities for students with severe disabilities to access upper secondary education.141 Research shows that many young adults face obstacles such as expectations regarding levels of literacy and motor skills as well as the geographical location of schools, suggesting that ‘adjustments are needed to remove a small but significant presence of discriminatory practices’.142 Finnish attitudes to equality and inclusion are generally progressive, as is reflected in the reformed approach to disability education. In its 2019 Report to the CteRC, Finland disclosed that more than 40 per cent of children with disabilities had experienced discriminatory bullying at school.143 It has been noted that for Finnish society to overcome hurdles such as this and ensure that it continues to promote inclusion in all facets, there is a need to ‘listen more carefully to persons with disabilities … but also to appreciate their experiences and inputs in society’.144

4.4  Conclusion Several key findings from this chapter can be attached to specific countries. The importance of including parents in decision-making and on process is illustrated by Spain, as is the importance of consistency in teacher education. The case of Romania underscores the difficulty of establishing inclusive education in contexts where shaping a positive view of disability is problematic. Croatia exemplifies the significance of training and professional development. The issue of consistency in practice across the whole of a federated State is illustrated by Germany, as is the importance of education for cultural change. The continuing challenge to end the segregation and exclusion of school students with disabilities is exemplified by the situation in Australia, which also illustrates the importance of a governmental commitment to inclusive education at the legislative and policy level. The integration of this commitment across legislation and policy at the macro and micro levels, is illustrated by Italy, which also exemplifies the need for processes to be implemented to ensure the individual assessment of needs for all students with disabilities. The importance of

 Nina U.  Heräjärvi, Markku O.  Leskinen, Raija A.  Pirttimaa, Kimmo J.  Jokinen and Maria A. Arvio, ‘Predictors of Completion of Upper Secondary Education of Young Adults with Severe Physical and Multiple Disabilities in Finland’ (2020) 35(3) European Journal of Special Needs Education 318, at 327. 142  Ibid. 143  CteRC, Convention on the Rights of the Child: Combined Fifth and Sixth Periodic Report of the Government of Finland, UN Doc. CRC/C/FIN/5–6, July 2019, at para. 254. 144  Elisabeth Hästbacka and Mikael Nygård, Creating Capabilities for Societal Participation in Times of Welfare State Change? Experiences of People with Disabilities in Finland (2019) 13 European Journal of Disability Research 15, at 25. 141

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having processes in place to address and prevent exclusion is exemplified by Finland. Fundamentally, this snapshot reveals that the adoption of relevant and numerous regulatory instruments at the domestic level, and the implementation of inclusive education as particularly required under CRPD Article 24, is per se insufficient to ensure adequate inclusiveness. First, a basic change in societal attitudes is required, moving from segregation to a positive view of disability, as a preliminary ground to avoid exclusion in education practices. Second, regulation must be complemented by targeted initiatives, particularly at the local level, addressing issues such as the lack of specialised learning support, modified technology and adequate transportation systems. There also seems to be a lack of norms specifically targeting intellectual disability as compared to other forms of disability. More generally, an important consideration emerges – that the appropriate delivery of educational services for persons with disabilities (more properly, differing abilities), cannot be taken for granted even in those economies that are most prosperous in a conventional sense. Looking at this from a different perspective, it cannot be said that economies that are less wealthy should be allowed the justification of relative economic impoverishment to excuse their own inadequacies in this regard. Attitudinal factors, cultural factors and institutional factors clearly play a role in determining the adequacy of States’ compliance with their international obligations.

References145 Documents Australian Bureau of Statistics. 2012. Profiles of Disability Australia, 2009, Catalogue No 4429.0. Australian Bureau of Statistics. 2014. Young People with Disability, 2012, Catalogue No 4427. Australian Bureau of Statistics. 2014. Young People with Disability, 2012. Convention against Discrimination in Education, opened for signature 14 December 1960, 429 UNTS 93, entered into force 22 May 1962. Convention for the Protection of Human Rights and Fundamental Freedoms, opened for signature 4 November 1950, 213 UNTS 221, entered into force 3 September 1953. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. Croatia. 2013. Preschool Education Act. CteRC. 2013. Consideration of Reports Submitted by States Parties under Article 44 of the Convention, UN Doc. CRC/C/HRV/3–4. CteRC. 2014. Concluding Observations on the Combined Third and Fourth Periodic Reports of Germany, UN Doc. CRC/C, 1875th mtg., UN Doc CRC/C/DEU/CO/3–4.

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CteRC. 2018. Concluding Observations on the combined fifth and sixth periodic reports of Spain, UN Doc. CRC/ C/ESP/CO/5–6. CteRC. 2019. Convention on the Rights of the Child: Combined Fifth and Sixth Periodic Report of the Government of Finland, UN Doc. CRC/C/FIN/5–6. CteRPD. 2013. Concluding Observations on the Initial Report of Australia, UN Doc. CRPD/C/ AUS/CO/1, 21. CteRPD. 2015. Concluding Observations on the Initial Report of Croatia, UN Doc CRPD/C/ HRV/CO/1. CteRPD. 2016. General Comment No. 4 on the Right to Inclusive Education, UN Doc. CRPD/C/GC/4. CteRPD. 2016. General Comment No. 4 on the Right to Inclusive Education, UN Doc. CRPD/C/GC/4. CteRPD. 2016. General Comment No. 4 on the Right to Inclusive Education, UN Doc. CRPD/C/GC/4. CteRPD. 2017. Opinion Approved by the Committee under Article 5 of the Optional Protocol, Communication No. 41/2017, UN Doc. CRPD/C/23/D/41/2017, 30 September 2020, Google Chrome translation, ‘Calleja Loma v. Spain’. CteRPD. 2019. Committee Experts Express Concerns about Slow Progress in the Implementation of the Convention, United Nations Human Rights Office of the High Commissioner (News and Events) https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=2498 9&LangID=E. CteRPD. 2019. Concluding Observations on the Combined Second and Third Periodic Reports of Spain, UN Doc CRPD/C/ESP/CO/2-3. Cth. of Australia. 1986. Disability Services Act 1986. Cth. of Australia. 1992. Disability Discrimination Act. Cth. of Australia. 2005. Disability Standards for Education. Deutsche Institut für Menschenrechte. 2015. Final Remarks from 2015, Monitoring Agency CRPD-UN, State Review 2018–2021, Report. Deutsche Institut für Menschenrechte. 2018. ‘Great Need for Action in Implementing the UN Convention on the Rights of Persons with Disabilities in North Rhine-Westphalia’, Press Release. Economic and Social Commission for Asia and the Pacific. 2012. Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific, UN ESCAP, UN Doc. ST/ ESCAP/2648. European Agency for Special Needs and Inclusive Education. 2018. European Agency Statistics on Inclusive Education, Dataset Cross-Country Report. European Agency for Special Needs and Inclusive Education. 2020. Legislation and Policy, Country Information: Spain, https://www.european-­agency.org/country-­information/spain/ legislation-­and-­policy. European Agency for Special Needs and Inclusive Education. 2020. Case Study, Kindergarten Sopot Centre of Excellence: an Inclusive Approach for Children With Disabilities in Early Years and Pre-Primary Education in Croatia, https://www.inclusive-­education-­in-­ action.org/case-­study/kindergarten-­sopot-­centre-­excellence-­inclusive-­approach-­children-­ disabilities-­early. Finland. 1919. Constitution. Finland 1998. Finland. Basic Education Act. Finland. 2018. Law 1998/628. Finnish National Board of Education. 2016. New National Core Curriculum for Basic Education: Focus on School Culture and Integrative Approach, https://www.oph.fi/sites/default/files/documents/new-­national-­core-­curriculum-­for-­basic-­education.pdf. General Assembly. 2015. Transforming our World: the 2030 Agenda for Sustainable Development, GA Res 70/1, 70th sess, agenda items 15 and 116, UN Doc A/RES/70/1.

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Germany. 1949. Grundgesetz für die Bundesrepublik Deutschland [Basic Law for the Federal Republic of Germany]. Germany. 1975. Sozialgesetzbuch XII – Sozialhilfe [Book Twelve of the Social Code]. Government of Romania. 2015. National Strategy―A Society Without Barriers for People with Disabilities 2015–2020, Report. Government of the Republic of Croatia. 2017. National Strategy for Equalization of Opportunities for Persons with Disabilities 2017–2020, Report. Human Rights Council. 2018. National Report Submitted in Accordance with Paragraph 5 of the Annex to Human Rights Council Resolution 16/21, UN Doc. A/HRC/WG.6/29/ROU/1. International Covenant on Economic, Social and Cultural Rights, opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. Italian Ministry of Education, School. 2018. Online Data on Students with Disabilities for the Year 2017/2018, https://www.miur.gov.it/web/guest/-­/ scuola-­on-­line-­i-­dati-­sugli-­studenti-­con-­disabilita-­riferiti-­all-­anno-­2017-­20-­1. Italy. 1948. Constitution. Italy. 1992. Law No. 104. Italy. 2015. Law No. 107. National Coalition Germany. 2019. Implementation of the UN Convention on the Rights of the Child in Germany (5th/6th Supplementary Report to the United Nations. OECD. 2020. Finland, Education at a Glance 2020, Report, https://www.oecd-­ilibrary.org/ docserver/a236a58f-­en.pdf?expires=1604571485&id=id&accname=guest&checksum=CE 3D07543D7A6583D76587A34E28B79B. Office of the High Commissioner for Human Rights. 2013. Thematic Study on the Right of Persons with Disabilities to Education, 25th sess., Agenda Items 2 and 3, UN Doc. A/HRC/25/29. OHCHR. 1990. World Declaration on Education for All. OHCHR. 2013. Thematic Study on the Right of Persons with Disabilities to Education, 25th sess., Agenda Items 2 and 3, UN Doc. A/HRC/25/29. OHCHR. 2013. Thematic Study on the Right of Persons with Disabilities to Education, 25th sess., Agenda Items 2 and 3, UN Doc A/HRC/25/29. OHCHR. 2020. ‘Spain Violated the Inclusive Education Right of a Child With Disabilities, UN Committee finds’, https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews. aspx?NewsID=26263/LangID=E. Professional Development Centre. 2014. Professional Development Centre of Kindergarten Sopot, Kindergarten Sopot, http://www.vrtic-­sopot.zagreb.hr/default.aspx?id=63. Romania. 1991. Constitution. Romania. 2008. Law no. 448/2006. Romania. 2020. Social Inclusion Strategy of Persons with Disabilities 2014–2020. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. 2020. Interim Report. Senate Community Affairs Committee, Parliament of Australia. 2015. Violence, Abuse and Neglect against People with Disability in Institutional and Residential Settings, Including the Gender and Age Related Dimensions, and the Particular Situation of Aboriginal and Torres Strait Islander People with Disability, and Culturally and Linguistically Diverse People with Disability. Spain. 1978. Constitution. Spain. 2006. Organic Act on Education. Spain. 2013. Improvement of the Quality of Education Act. UN GA. 1993. Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Res. 48/96. UNESCO, Education for All 2015 National Review Report: Romania, Report, 19–22 May 2015. UNESCO. 1994. The Salamanca Statement and Framework for Action on Special Needs Education. UNESCO. 2018. Global Education Monitoring Report Summary on Disabilities and Education, UN Doc. ED/GEM/MRT/2018/SN/1.

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UNESCO. 2020. Towards Inclusion in Education: Status, Trends and Challenges: The UNESCO Salamanca Statement 25 Years On, Report, https://unesdoc.unesco.org/ark:/48223/ pf0000374246?posInSet=1&queryId=c9974527-­4f92-­46d0-­b9f3-­e0f753d20933. Universities for Labour Inclusion of People with Intellectual Disabilities. 2019. Education and Employment for Persons with Intellectual Disabilities in Europe: Psychological and Legal Perspectives, Report.

Cases Bundesverfassungsgericht [German Constitutional Court], 2 BvQ 22/19, 15 April 2019 reported in (2019) I BGBl 368. Corte Costituzionale [Italian Constitutional Court], Sentence No. 80/2010. Đordević v. Croatia, European Court of Human Rights, Chamber, Application No. 41526/10, 24 July 2012. G.L. v. Italy, European Court of Human Rights, Chamber, Application No. 59751/15, 10 September 2020.

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Chapter 5

Economics and Disability Rights: Inclusive Sustainability Ottavio Quirico and Ciprian Radavoi

Contents 5.1  I ntroduction 5.2  T  he Macroeconomics of Disability and Public International Law 5.2.1  Investment, Trade and Disability 5.2.2  Disability-Inclusive Climate Policy and Finance 5.3  Institutional Initiatives 5.3.1  The World Bank and Inclusive Investment Project Financing 5.3.2  The UN Development Program: Achieving Social Protection via National Action Plans 5.3.3  Focusing on ICT: The UN Educational, Scientific and Cultural Organisation 5.3.4  Creating Equal Employment Opportunities at the International Labour Organisation 5.3.5  The World Health Organisation and Assistive Technology 5.4  The Case of Copyright and Disability 5.5  The Microeconomics of Disability and Private International Law 5.6  Conclusion References

 108  109  109  113  115  115  116  117  118  120  121  123  126  127

Abstract  Society must embrace economic sustainability, which entails eradicating poverty and ensuring environmental protection, with specific regard to the existential problem of climate change. Persons with disabilities (different abilities) are often among the poorest in society and are significantly more vulnerable to climate change, particularly in developing countries. From a macroeconomic perspective, this compels the adoption of an inclusive paradigm, focusing on independent living, O. Quirico (*) Law School, University of New England, Sydney, Australia Centre for European Studies, Australian National University, Canberra, Australia Law Department, European University Institute, Firenze, Italy e-mail: [email protected]; [email protected]; [email protected] C. Radavoi Law School, Charles Darwin University, Darwin, NT, Australia e-mail: [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_5

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equal employment opportunities and full participation in decision-making. Within this framework, the most fundamental need is arguably employment and the development of inclusive ICT shows the utmost potential. From a microeconomic perspective, the key question is establishing uniform regulation to create a predictable framework for trade and investment on a global scale, for instance, by outlining clear criteria that trigger the law applicable to property assets owned by people with disabilities. Keywords  Macroeconomics · Microeconomics · Investment · Trade · Inclusive sustainability · Public and private international law

5.1  Introduction Disability, rectius, different ability, raises fundamental economic questions in society, ranging from the need for public funding targeted at persons with disabilities, including, for instance, assistive devices and social insurance coverage, to public-­ private partnerships and redistribution of existing resources through international cooperation. According to the Disability Investment Group, over the next 40 years the number of people with severe disability will increase from 1.4 million to 2.9 million, triggering a yearly growth in demand for specialised disability services of 7.5%.1 This has relevant implications for issues such as the constitution of Special Disability Trusts, savings and investment incentives, private investment in housing, better employment opportunities and developing best practice and research. This chapter explores the macro- and microeconomic implications of disability rights from a global and comparative perspective. The first part of the analysis focuses on the macroeconomic implications of disability rights from a public international law and comparative stance. Taking a substantive approach, this part outlines the essential framework defining the interaction between investment and trade, on the one hand, and disability rights, on the other, in light of relevant international regulation. It also develops specific considerations on essential features of the relationship between climate change and disability rights. Indeed, the economy is currently more than ever underpinned by the concepts of environmental protection and poverty eradication, which are closely intertwined with the notion of disability rights. Moving to the procedure, the analysis focuses on institutional initiatives addressing the economic implications of disability rights, whereby the World Bank, United Nations Development Program (‘UNDP’), UN Educational, Social and Cultural Organisation (‘UNESCO’), International Labour Organisation (‘ILO’) and World Health Organisation (‘WHO’) emerge as key international actors. In this context, the relationship between copyright and disability is considered as a pilot case, concretely showing the transnational issues of harmonisation raised by disability in

 Disability Investment Group, Report on a New Disability Policy Framework for Australia (2009).

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copyright law and how they can be approached. The second part of the analysis focuses on the microeconomic implications of disability rights from a private international law and comparative perspective, exploring key cross-border ‘transnational’ disability issues.

5.2  T  he Macroeconomics of Disability and Public International Law 5.2.1  Investment, Trade and Disability The global employment rate for people with disabilities is significantly lower than that of persons without disabilities. According to the World Bank, the lower rates of economic and labour market participation concerning persons with disabilities impose a significant welfare burden on governments. Whilst governmental support schemes, such as social disability insurance, are critical to lifting the disabled above the line of poverty,2 their cost ranges from 1% to 7% of GDP.3 Furthermore, adopting public support via social disability insurance or cash transfer entails shortcomings such as substitution of work with non-work.4 According to the World Report on Disability produced jointly in 2011 by the WHO and World Bank, high unemployment rates among disabled persons engender lower productivity and revenues from taxation, which is aggravated by the fact that family members have to reduce working hours to care for disabled persons.5 Higher percentages of disabled persons experience poverty as compared to non-­ disabled people:6 80% of persons with disabilities live in developing countries.7 In fact, households experience a significant disadvantage, given that unemployed disabled persons do not have a wage and often face extra costs for assistance.8 Poverty

2  Robert Haveman and Barbara Wolfe, ‘The Economics of Disability and Disability Policy’, in Anthony J. Culyer and Joseph P Newhouse (eds), The Handbook of Health Economics (Elsevier, 2000) 995, at 1029–30. 3  ILO, The Price of Exclusion: The Economic Consequences of Excluding People with Disabilities from the World of Work (2009) at 51; World Bank, Disability Inclusion and Accountability Framework (2018) at 2; UNDP, Disability Inclusive Development in UNDP (2018) at 13. 4  Haveman and Wolfe, ‘The Economics of Disability’ (2000) at 1021; Pierre Koninga and Jan-­ Maarten van Sonsbeek, ‘Making Disability Work? The Effects of Financial Incentives on Partially Disabled Workers’ (2017) 47 Labour Economics 202, at 214. 5  World Bank and WHO, World Report on Disability (2011) at 44. 6  Haveman and Wolfe, ‘The Economics of Disability’ (2000) at 1029. 7  Australian Government, Development for All: Strategy for Strengthening Disability-Inclusive Development in Australia’s Aid Program 2015–2020 (2015) at 4. 8  Australian Government, Development for All (2015) at 4.

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also increases the risk of disability as it prevents access to health care,9 triggering further negative economic effects. Persons with disabilities are therefore crucial in the context of the 2030 Sustainable Development Agenda, together with vulnerable groups, such as indigenous people and older persons, which themselves often include disabled persons.10 The problem is particularly acute in developing countries: in 2011, the World Bank and WHO prepared a comprehensive survey and estimated that the ratio between the needs of the disabled and their satisfaction varies. The amount of vocational training offered is higher than the demand for it, which possibly signals a lack of adequate information on vocational training services. The level of fulfilment among end-users is satisfactory as concerns health services, but progressively decreases when considering educational services, assistive device services and welfare services. However, also in developed countries figures are not satisfying; reportedly, only 50% of national disability services demand is met in Australia.11 This signals that the shift from the assistive approach to the inclusive paradigm prompted by the CRPD is still under way. Demand and Offer of Disability Services in Developing Countries 100 90 80 70 60 50 40 30 20 10 0 Vocational Training

Health Services

Educational Services Demand

Offer

Assistive Device Services

Welfare Services

Flow chart based on data as reported in WHO and World Bank, The World Report on Disability (2011) at 42: Met and Unmet Need for Services Reported by People with a Disability – Selected Developing Countries

Multi-dimensional poverty, for instance, including health and education services, is particularly associated with disability in middle-income countries, whereby 9  Sophie Mitra, Aleksandra Posarac and Brandon Vick, ‘Disability and Poverty in Developing Countries: A Multidimensional Study’ (2013) 41 World Development 1, at 2 ff. 10  UN GA, Transforming Our World: The 2030 Agenda for Sustainable Development, A/RES/70/1, 21 October 2015, at para 23. 11  Gemma Carey et al., How Is the Disability Sector Faring? (2019) at 19.

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persons aged 40 and above and those with multiple disabilities are more likely to be multi-dimensionally poor.12 Goal 1 of the 2030 Sustainable Development Agenda is crucial to the disabled since it fixes the objective of reducing by at least the half the proportion of men, women and children of all ages who are in poverty. According to the UN, this goal compels States to make all possible efforts to break the negative spiral involving income poverty, multidimensional poverty and disability.13 In light of these prospects, it is important to implement a shift from an assistive economic approach to an inclusive paradigm, in line with the CRPD,14 along two fundamental axes: (1) developing inclusive economic infrastructure; and (2) involving the disabled in trade and investment.15 Removing barriers in these areas should therefore become a priority: accessibility is the cornerstone of economic inclusion and a ‘key driver of change’.16 Infrastructure accessibility, including elements such as roads, buildings and fostering trade in assistive products, can be ensured via investment supporting the breaking of trade and investment barriers for the disabled. Goal 11 of the Sustainable Development Agenda,17 aiming to make cities and human settlements inclusive, safe, resilient and sustainable, seeks to ensure access for all to adequate, safe and affordable housing, basic services and sustainable transport systems, with a particular focus on the disabled and vulnerable groups (Targets 11.1 and 11.2). Target 11.7 aims to provide universal access to safe, inclusive and accessible green spaces, with a focus on disability. According to the World Bank Group, accessibility is a comprehensive notion, spanning education, employment, social protection, health, infrastructure, affordable energy, financial services and productive assets.18 For instance, adapting footpaths allows the disabled to attend market places and participate in local trade. The World Bank Water and Sanitation Program takes into account the problems that the disabled face in accessing water, for example, as concerns designing accessible infrastructure.19 In this regard, planning is essential: ensuring accessibility at the early design stage carries an estimated cost of 0.01% of GDP, and brings cost savings by reducing dependence on others for day-to-day necessities.20

 Mitra, Posarac and Vick, ‘Disability and Poverty’ (2013) at 11.  UN Department of Economic and Social Affairs, Disability and Development Report (2018) at 36. 14  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. 15  Cf. World Bank Group, Disability Inclusion and Accountability Framework (2018) at 3. 16  Christina Parasyn, Kylie Mines, Ipul Powaseu, Dwi Ariyani and Kieran Power, ‘Disability and Aid for Inclusive Trade’, in Aid for Inclusive Trade, Extending the Benefits of Trade to Reduce Poverty (2019) 18, at 20. 17  UN GA, Transforming Our World: The 2030 Agenda for Sustainable Development, A/RES/70/1, 21 October 2015. 18  World Bank Group, Disability Inclusion (2018) at 3. 19  World Bank, Including Persons with Disabilities in Water Sector Operations: A Guidance Note (2017) at 23. 20  Australian Government, 2013, Accessibility Design Guide: Universal Design Principles for Australia’s Aid Program (2013) at 14. 12 13

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Involving the disabled in trade and investment processes entails actively including people with disabilities in investment and trade as decision-makers with suitable opportunities to inform economic decisions. For instance, the World Bank Group considers the inclusion of persons with disabilities a key element of growth analysis and includes them in country consultations:21 this allows the building of skills and capacities among the disabled. It is also important to integrate the disabled as active agents in financial and trade markets: reportedly, the total after-tax disposable income of working-age disabled persons is about $490 billion.22 In such a context, it is essential to grant persons with disabilities access to employment, shifting the approach of decision-makers. Goal 8.5 of the 2030 Sustainable Development Agenda specifies the need to achieve ‘full and productive employment and decent work’ for all persons with disabilities. Sustainable Development Goal (‘SDG’) 10, concerning the reduction of inequality within and among countries, provides, under Target 10.2, the aim of empowering and promoting social, economic and political inclusion for all, regardless of disability or other status, by 2030. To this end, Microsoft has developed a targeted disability hiring program for people on the Autism spectrum.23 As underscored by the ILO, it is important to provide people with disabilities with the necessary skills to work in the ongoing and post-COVID-19 environments, which requires companies to implement innovative business plans such as flexible working hours and telework.24 For the purposes of integration, the concept of a ‘barrier’ certainly includes physical elements. Whilst assistive technology, such as wheelchairs, walking aids, and communication boards are essential for integration at work, it is estimated that only 5–15% of people in need have access to it.25 Studies have shown that in Pacific Island countries there are complex import procedures for assistive technology, prohibitive import taxes and limited delivery capacities, a lack of product specifications and quality, delivery delays and insufficient information on supply and suppliers.26 Furthermore, disability service providers in countries such as Australia are not flourishing,27 largely thanks to the inadequacy of service pricing.28 More broadly, ‘barriers’ include attitudes, information, communication and policy measures: an inclusive approach to disability is a key component of corporate social responsibility. Reportedly, inclusive businesses outperform non-inclusive businesses: on average, inclusiveness leads to 28% higher revenues, 30% higher economic profit margins and doubled net incomes when compared to non-inclusive companies.29 On

 World Bank Group, Disability Inclusion (2018) at 6.  Ibid., at 14. 23  Accenture, Getting to Equal: The Disability Inclusion Advantage (2018) at 12. 24  ILO, Disability Inclusion in Company Responses to COVID-19 (2020) at 7 ff. 25  Parasyn, Mines, Powaseu, Ariyani and Power, ‘Disability’ (2019) at 22. 26  Ibid. 27  Carey et al., ‘How Is the Disability Sector Faring?’ (2019) at 27. 28  Ibid., at 16. 29  Accenture, Getting to Equal (2018) at 7. 21 22

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this basis, the ‘Valuable 500 Campaign’ was established in 2019 as a global movement at the World Economic Forum: it currently includes around 300 national and multinational private businesses aiming to promote disability on the business leadership agenda.30

5.2.2  Disability-Inclusive Climate Policy and Finance In addition to the obligation to eradicate poverty, the concept of sustainable development includes an obligation to protect the environment, with climate change considered essential and intertwined with poverty reduction.31 In fact, climate change significantly affects the rights of persons with disabilities in several ways and, as such, it must be taken into account in any economic discourse on disability rights.32 It is demonstrably the case that, as a result of their disproportionate economic marginalisation, persons with disabilities are also particularly affected by climate change.33 For instance, the majority of persons with disabilities live in poverty and their situation is particularly aggravated by global warming, which triggers loss of income and opportunity, displacement, hunger and negative health consequences. Notably, climate change exacerbates employment barriers for the disabled, for example, by causing loss of jobs, given that the ratio of disabled workers is significantly lower compared to other sectors of the population. Furthermore, owing to the widespread implications of climate change, issues such as gender and age increase the negative impact of global warming on the disabled yet further. It is therefore necessary to include the disabled when considering climate action, in light of a human rights-based approach grounded in the CRPD, so as to best develop risk reduction and measures that are tailored for, and can be carried out by, persons with disabilities.34 Significantly, SDG 4.7 establishes that, by 2030, all learners must acquire the knowledge and skills that are necessary to promote sustainable development, including via education for sustainable lifestyles. Monitoring the implementation of the CRPD, the Committee on the Rights of Persons with Disabilities (‘CteRPD’) has recognised that global warming exacerbates inequality and vulnerability among persons with disabilities and has thus recommended that States factor for disability

 The Valuable 500, https://www.thevaluable500.com.  World Commission on Environment and Development, Our Common Future, Report (1987) at para. 27. 32  HRCte, Resolution 10/4. Human Rights and Climate Change, 24 March 2009, Preamble. 33  OHCHR, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc A/HRC/44/30 (2020) at para. 4. 34  IPCC, Global Warming of 1.5 °C (2018) ch. 5, at 479. More generally, see Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 200. 30 31

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in making their national climate policies, with a particular focus on rural areas.35 This approach aligns with the Preamble to the Paris Agreement, which establishes that parties should respect, promote and consider human rights in taking climate action, including the rights of people with disabilities and those who are in vulnerable situations. In 2019, the CteRPD and other human rights committees issued a statement to the effect that failing to act against climate change can be in violation of State human rights obligations and, in this context, the disabled must be involved as an agent of change and a partner in climate action.36 This is consistent with CRPD Article 3, which establishes a right to participation for persons with disabilities. The strengthened framework for implementing the CRPD via new procedures, such as national focal points and coordination mechanisms under CRPD Article 33, should support the effective realisation of these policies. The Office of the High Commissioner for Human Rights (‘OHCHR’) has adopted a disability-inclusive climate policy, to be developed by States via inter-institutional collaboration. This policy should be implemented within the context of the UN Framework Convention on Climate Change (‘UNFCCC’) regime, involving particularly those ministries dedicated to social and human rights affairs. This requires States, inter alia, to take more ambitious climate change mitigation and adaptation measures so as to limit the impact of climate change on persons with disabilities, and to ensure the informed and effective participation of persons with disabilities in climate change decision-making.37 At the UNFCCC level, participation should be ensured not only via the involvement of the disabled in the negotiation process, notably through the Conference of the Parties, but also via capacity-building, strengthening the negotiation skills of the disabled.38 In this context, it is essential that equal rights and opportunities be promoted in the labour market; educational and vocational training for the disabled be supported, including sustainable development and climate change; and that the disabled are involved as an ‘integral constituency’ in the green economy.39 A further chapter aims to promote a disability-inclusive climate finance, by conducting disability rights impact assessments and a quantitative and qualitative evaluation of disability-inclusive policies.40

 See, for instance, CteRPD, Concluding Observations on the Initial Report of Guatemala, UN Doc CRPD/C/AUS/CO/2-3, 30 September 2016. 36  CteRPD et al., Joint Statement on Human Rights and Climate Change, 16 September 2019. 37  OHCHR, Analytical Study (2020) at para. 61. 38  Ibid., at para. 62. 39  Ibid., at para. 63. 40  Ibid., at para. 64. 35

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5.3  Institutional Initiatives 5.3.1  T  he World Bank and Inclusive Investment Project Financing The World Bank is an international financial institution which mainly provides loans and grants to developing countries for the pursuit of capital projects.41 The Bank participates in an Inter-Agency Support Group for the CRPD.42 The Bank thus contributes to promoting compliance with the principles of the CRPD and increases the scale and effectiveness of UN involvement in the area of disability. The World Bank Group recognises that persons with disabilities are more likely to experience adverse socioeconomic outcomes than persons without disabilities such as less education, poorer health outcomes, lower levels of employment and higher poverty rates. According to the World Bank, the global development and poverty reduction agenda cannot be effectively implemented without addressing such inequalities and involving persons with disabilities in all stages of development strategies.43 The World Bank Environmental and Social Framework comprehensively fosters non-discrimination vis-à-vis the disabled in operations supported through investment project financing. The Framework requires borrowers to identify risks and impacts of projects focusing on the disabled and sets standards for inclusive labour conditions with respect to the disabled, including reasonable accommodation. It also imposes universal access in designing new constructions and demands specific measures to allow the participation of stakeholders with disabilities, for instance, by ensuring the accessibility of communications.44 Among targeted initiatives, over three years, starting in 2021, the World Bank Trust Fund on Disability-Inclusive Education in Africa aims to collect evidence about economic and social structures that affect inclusion for children with disabilities, and to fund demand-driven demonstrations that support inclusion and disseminate targeted policy recommendations. The ultimate objective is providing strategic information for inclusive policy recommendations.45

 World Bank, https://www.worldbank.org.  UN, Department of Economic and Social Affairs, Inter-Agency Support Group for the Convention on the Rights of Persons with Disabilities, https://www.un.org/development/desa/disabilities/ about-us/inter-agency-support-group-for-the-convention-on-the-rights-of-persons-with-­ disabilities.html. 43  World Bank Group, Disability Inclusion (2018) at IV. 44  Ibid., at 5 45  Ibid., at 2. 41 42

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5.3.2  T  he UN Development Program: Achieving Social Protection via National Action Plans The UNDP puts human rights at the heart of sustainable development, including poverty alleviation and equal opportunities. Accordingly, it seeks to advance the core principles of the UN Charter and supports disability-inclusive development through the CRPD and the SDGs, which are conceived of as complementary instruments.46 Beyond this, the UNDP fosters comprehensive approaches to inclusiveness by supporting States in the adoption of national action plans implementing the CRPD. For instance, in 2011, it supported the Albanian Government’s review of its legislative framework with a view to the accession of Albania to the CRPD and in 2016 it buttressed the adoption of an inclusive National Action Plan on Persons with Disabilities with a focus on prevention of discrimination and facilitation of access to public services.47 In 2017, the UNDP implemented a ‘Smart and Inclusive’ campaign to promote positive messaging to make cities more inclusive.48 In 2018, it provided support to Liberia in adopting a five-year National Action Plan for the Inclusion of Persons with Disabilities, particularly focusing on the welfare rights of the disabled.49 In such a context, the Optional Protocol to the CRPD is viewed as an essential element, particularly because of participation procedures, notably, the individual communication procedure (Article 1), which allows individuals and groups to bring violations of duties under the CRPD to the attention of the CteRPD.50 A key element of the UNDP inclusion strategy is social protection, encompassing income security, access to social services and employment schemes along the lines of CRPD Article 28 and SDGs 1.3, 3.8, 5.4, 8.5 and 10.4. In light of this approach, the UNDP contributed to the elaboration of a Deinstitutionalisation Strategy and Action Plan, which effectively helped Moldova to transition to community-­based arrangements for the provision of mental health care, establishing Community Mental Health Centres throughout the country within 18 months and diminishing the number of beds in psychiatric hospitals by 40%. These developments further attracted technical and financial assistance by Czech and Swiss development cooperation agencies and triggered the creation of the first organisation of users and survivors of psychiatry, monitoring psychiatric hospitals and signalling cases of discrimination to the Equality Council.51 With specific regard to the right to work, the UNDP is partnering with the Ministry of Labour and Social Policy and the Employment Service Agency of North Macedonia to develop a self-employment programme for people with disabilities,  UNDP, Disability Inclusive Development in UNDP Guidance and Entry Points (2018) at 10.  Ibid., at 25. 48  Ibid. 49  Ibid., at 24. 50  Ibid., at 20. 51  Ibid., at 32. 46 47

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helping them to establish their own businesses. As part of socially inclusive growth, the plan includes grants and affords newly created start-ups the possibility of employing additional people, helping in turn to overcome barriers. The programme also fosters business skill development, particularly via mentorship for the disabled by experienced business operators. The plan has led to the creation of 173 businesses, 34% of which are run by women.52

5.3.3  F  ocusing on ICT: The UN Educational, Scientific and Cultural Organisation UNESCO has taken several initiatives fostering inclusiveness for persons with disabilities as concerns education, which is preliminary, inter alia, to eliminating employment discrimination.53 Key to the UNESCO strategy is the idea of ‘digital empowerment’ as a means to promote economic development, within the framework of the ‘digital economy’, a strategy that the World Bank Group also shares.54 UNESCO thus aims to reduce the gap in the use of digital resources between disabled and non-disabled people, with the former being more than 20% more likely not to have ever used the Internet than the latter, a figure that also coincides with lower income for people with disabilities worldwide, particularly in developing countries.55 Digitally empowering the disabled entails two fundamental actions: (1) granting equal accessibility for the disabled; and (2) developing specific tools to support the disabled. Granting equal accessibility requires action such as making information about ICT services available in specific formats for a hearing-impaired person or developing specific screen readers allowing visually impaired people to access Web content.56 For example, Colombia’s Plan Vive Digital helped to increase Internet connectivity for the disabled from two million participants in 2010 to 14.4 million in 2014.57 Robobraille, another internet-based initiative, is a free online tool that translates text into Braille. Developing specific tools to support the disabled is an effective action to materially target disability. For instance, applications such as WheelMap and AccessibleMap assist users with mobility and vision impairment to safely reach a destination. The ‘Internet of Things’ allows the remote operation of smart devices, such as lighting, via smartphones, which is of great usefulness to the  Ibid., at 35.   Alireza Darvishy, Deniz Erocal and Juliet Manning, Delivering Together for Inclusive Development: Digital Access to Information and Knowledge for Persons with Disabilities (2019) at 28. See also De Beco, Disability (2021) at 111–112. 54  Deepti Raja, Bridging the Disability Divide through Digital Technologies: Background Paper for the 2016 World Development Report – Digital Dividends (World Bank Group, 2016) at 11. 55  Darvishy, Erocal and Manning, Delivering Together (2019) at 9. 56  Raja, Bridging the Disability Divide (2019) at 3–4. 57  Darvishy, Erocal and Manning, Delivering Together (2019) at 10. 52 53

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disabled not only at home, thus addressing the issue of independent living, but also at work and for transport purposes. Printing in 3D has opened up the possibility of creating customised prosthetic devices at significantly cheaper prices compared to traditional production methods; this has led to the establishment of Enabling the Future, an international network including 7000 volunteers who create prosthetic arms and hands via printers connected worldwide.58 Tools such as electronic voting are also powerful instruments allowing the participation of the disabled in economic decision-making.59 Along the lines of digital inclusiveness, UNESCO promotes international cooperation to share technologies, particularly in light of SDG 17.60 UNESCO has thus partnered with the International Telecommunication Union and the China Foundation for Disabled Persons to promote inclusive policies with respect to Information and Communications Technology (‘ICT’). The partnership aims to support inclusive national policies, improving standards for ICT accessibility and training professionals, such as software developers.61 Under the guidance of the Universal Declaration of Human Rights,62 which establishes a universal right to education, the UNESCO also adopted a Model Policy for Inclusive ICT in Education for Persons with Disabilities, which aims to promote inclusive ICTs at the global level to support the implementation of the CRPD.63 The underpinning rationale is facilitating social inclusion and employment.64 The Model Policy aims to inform action via the adoption of national action plans mainstreaming disability and implementing inclusive education and ICT.65

5.3.4  C  reating Equal Employment Opportunities at the International Labour Organisation The ILO currently includes 187 Member States and has a well-established tradition of supporting equal opportunities for the disabled, along the lines of the recognition of the right to work as a fundamental claim under key human rights instruments, such as the UDHR and the International Covenant on Economic, Social and Cultural Rights (‘ICESCR’).66 On the one hand, the ILO seeks to develop programmes aiming to overcome specific barriers; on the other, it aims to ensure the inclusion of  Ibid, at 12.  Ibid, at 18. 60  Ibid., at 28 ff. 61  UNESCO, Empowering Persons with Disabilities through ICTs (2009) at 7. 62  UN GA, Universal Declaration of Human Rights, Res 217(III)A, 10 December 1948. 63  UNESCO, Model Policy for Inclusive ICTs in Education for Persons with Disabilities (2014). 64  Ibid., Chapter 3. 65  Ibid., Chapter 5. 66  Opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. 58 59

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disabled persons in mainstream activities, such as skill training and poverty reduction strategies. The ILO operates based on the accurate collection of relevant information on the employment situation of the disabled.67 One of its aims is to make national disability strategies more inclusive by supporting the disabled in job searching and by prompting employers to recruit persons with disabilities.68 In this context, international cooperation is seen as a key element to alleviate the impact of market forces on the disadvantaged situation of the disabled in developing countries where service accessibility is lower.69 The ILO has taken several key regulatory initiatives already, starting in 1952 with the ILO Social Security (Minimum Standards) Convention,70 which includes provisions on disability. Notably, Article 35 of that Convention requires institutions and governmental departments administering medical care to cooperate with general vocational rehabilitation services, in order to facilitate the return of the disabled to work. For this purpose, Article 35 establishes that legislation can authorise institutions and departments to pass provisions for the vocational rehabilitation of the disabled. This was followed in 1958 by the ILO Discrimination (Employment and Occupation) Convention71 and its accompanying Recommendation,72 both of which envisage the adoption of national equality policies aiming to eliminate discrimination in employment, including the taking of so-called ‘special measures’ for the disabled. In the 1960s, the ILO played a key role in the adoption of the ICESCR, particularly as concerns norms relating to work. Article 6 is a cornerstone of that Convention and provides that States afford equal employment opportunities, including vocational guidance and training programmes, with a view to achieving steady economic, social and cultural development and full employment. In 1975, the ILO adopted a Resolution concerning the Vocational Rehabilitation and Social Reintegration of Disabled or Handicapped Persons,73 which underscored the need for special measures for inclusiveness and improvement of employment opportunities, with a specific focus on developing countries. In 1983, this led to the adoption of the Vocational Rehabilitation and Employment (Disabled Persons) Convention74 and its accompanying Recommendation,75 requiring States to develop adequate vocational rehabilitation and employment strategies for the disabled, according to  See, for instance, ILO, Decent Work for Persons with Disabilities: Promoting Rights in the Global Development Agenda (2015) at 65–66. 68  Ibid., at 137–146. 69  Ibid., at 147. 70  Opened for signature 28 June 1952, ILO No 102, entered into force 27 April 1955. 71  Opened for signature 25 June 1998, ILO No 111, entered into force 15 June 1960. 72  ILO, Discrimination (Employment and Occupation) Recommendation, No 111, 25 June 1958. 73  ILO, Resolution concerning Vocational Rehabilitation and Social Reintegration of Disabled or Handicapped. Persons, 24 June 1975. 74  Opened for signature 20 June 1983, ILO No 159, entered into force 20 June 1985. 75  ILO, Vocational Rehabilitation and Employment (Disabled Persons), Recommendation No 168, 20 June 1983. 67

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available resources. More recently, in 2002, the ILO adopted a Code of Practice on Managing Disability in the Workplace,76 which outlines the duties of employers, from recruitment to promotion and accessibility. Via the 2014–17 Disability Inclusion Strategy and Action Plan, the ILO outlined an inclusive pattern to mainstream disability within its initiatives.77

5.3.5  The World Health Organisation and Assistive Technology The WHO is a leader in collecting data on disability and granting accessibility to health. It also plays a fundamental role in the area of assistive technology.78 Reportedly, more than one billion people require one or more assistive products in their day-to-day lives, but only one in ten has access to such products,79 constraining the possibilities open to the disabled to participate in society and access education and work. In 2014, the WHO established the Global Cooperation on Assistive Technology (‘GATE’) to increase awareness of market opportunities, by supporting Member States in facilitating access to assistive technology as part of universal health coverage.80 The GATE was triggered in 2013 at a side event of the High-level Meeting of the UN General Assembly on Disability and Development, when stakeholders asked the WHO to develop a global initiative to implement obligations under the CRPD as concerns increased access to assistive technology. In particular, CRPD Article 32(1) (d) provides that the State Parties to that Convention cooperate to ensure technical and economic assistance, including the facilitation of access to, and sharing of, accessible and assistive technologies. This prompted the WHO to establish the GATE as a partnership, including representatives of international organisations, professional organisations and universities. The purpose of the GATE is to reduce the cost of assistive products and afford training tools to support countries and improve the accessibility of high-quality assistive products. GATE takes a user-­ centred approach and thus involves users and their families in decision-making to tailor policies and services. In 2016, the WHO launched the Priority Assistive Products List, which includes a minimum of 50 products based on their impact on people’s lives. The list prompts States to single out priority products, providing guidance to shape markets; it includes wheelchairs, communication aids, artificial limbs and memory aids. The WHO has also developed guidance on innovative models for service provision,  ILO, Managing Disability in the Workplace: Code of Practice (2002).  ILO, Disability Inclusion Strategy and Action Plan 2014–17 (2015). 78  WHO, Disability, https://www.who.int/health-topics/disability#tab=tab_1. 79  WHO, Priority Assistive Products List (APL), https://www.who.int/phi/implementation/assistive_technology/global_survey-apl/en. 80  WHO, Global Cooperation on Assistive Technology, https://www.who.int/phi/implementation/ assistive_technology/phi_gate/en. 76 77

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integrating assistive products service provisions into the health system and establishing a network of specialist referral centres. Furthermore, the WHO trains personnel for following-up on the delivery of assistive products, without which such products would not be of much benefit, an area where countries face significant difficulties.81 To this end, the WHO created a series of e-learning modules called Training in Priority Assistive Products (‘TAP’), which aim to improve the skills of primary healthcare workforce in following assistive products from the Priority Assistive Products List. TAP includes online modules and mentoring and supervision mechanisms, focusing on functional areas, such as cognition, communication, vision, hearing, continence and mobility.82

5.4  The Case of Copyright and Disability In order to achieve integration at all levels, notably with respect to education and employment, access to culture is essential. In fact, the 2030 Sustainable Development Agenda promotes primary, secondary and tertiary education as well as technical and vocational training, without discrimination for the disabled and disadvantaged groups.83 Specifically, SDG 4(5) establishes the aim of eliminating gender disparities in education and ensuring equal access to any level of education and vocational training for vulnerable persons, including the disabled. Reportedly, over 129 million book titles are available in the world, but in reality less than 10% of these titles are available to persons with print disabilities and less than 1% are available in developing countries in formats such as Braille, large print or audio.84 This is therefore a critical area of the economy, where it is necessary to overcome barriers and grant accessibility. According to UNESCO, digital libraries are a key element of the digitally inclusive policy that should underpin economic development, particularly in developing countries.85 To alleviate the problem of the ‘book famine’, institutionally, the World Intellectual Property Organization (‘WIPO’) established the Accessible Books Consortium (‘ABC’), which is a public-private partnership, including stakeholders such as organisations representing persons with print disabilities, for instance, the World Blind Union (‘WBU’), authors, publishers and libraries for the blind. ABC improves outcomes for people with blindness and low vision, with a specific focus on developing countries. For instance, the ABC Global Book Service is an online international catalogue that allows libraries for the blind to search and request  WHO, Public Health, Innovation, Intellectual Property and Trade – Personnel, https://www.who. int/phi/implementation/assistive_technology/at-personnel/en. 82  Ibid. 83  UN GA, Transforming Our World (2015) at para. 25. 84  Caitlin Reid, Ending the Book Famine: The Marrakesh Treaty, 18 May 2017, https://www.iapb. org/news/ending-the-book-famine-the-marrakesh-treaty. 85  Darvishy, Erocal and Manning, Delivering Together (2019) at 31. 81

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digital books free of charge. The Service includes books that both sighted persons and the print disabled can use, as well as guidelines on how to produce ‘born accessible’ books. ABC also provides funding towards the production of accessible educational materials.86 As concerns substantive regulation, the 1950 Agreement on the Importation of Educational, Scientific, and Cultural Materials was adopted by UNESCO,87 providing for the exemption of customs duties on the import of specific goods, notably, ‘articles for the blind’ (Article II(e)). These include ‘books, publications and documents of all kinds in raised characters for the blind’ (Article II(e)(1)) and ‘other articles specially designed for the educational, scientific or cultural advancement of the blind’, when imported directly by institutions or organisations concerned with the welfare of the blind and approved by competent authorities for the purpose of duty-free entry (Article II(e)(2)). To date, however, the Agreement has only been ratified by 46 parties. More recently, in 2013, and after years of tireless advocacy from the WBU and other stakeholders, the membership of WIPO adopted the Marrakesh Treaty to Facilitate Access to Published Works by Visually Impaired Persons and Persons with Print Disabilities.88 Currently, the Marrakesh Treaty has been ratified by 80 parties, including key States such as the US, Russia, Brazil and India, though not China. The Treaty operates within the framework of the Bern Convention for the Protection of Literary and Artistic Work.89 In particular, the Marrakesh Treaty carves out exceptions from the WIPO Copyright Treaty,90 which regulates the digital environment as concerns the rights of reproduction for copyrighted work, and its distribution and publication. The Marrakesh Treaty fundamentally enables ‘authorised entities’, such as blind persons’ organisations and libraries, to reproduce documents in accessible formats for non-profit purposes, either by means of creation or import (Articles 4 and 6). The Treaty allows authorised entities to share accessible material with other authorised entities across borders, something particularly helpful for developing countries (Article 5). For this purpose, the Treaty provides that the WIPO International Bureau establish an information access point (Article 9). The Treaty is consistent with CRPD Article 30, which establishes the rights of persons with disabilities to ‘cultural materials in accessible formats’, in order to ensure participation and inclusiveness (Article 30(a)). The same provision imposes on State Parties an obligation to take all appropriate steps under international law to ensure that laws protecting IP rights do not impede access by persons with disabilities to cultural materials on an

  Accessible Books Consortium, https://www.accessiblebooksconsortium.org/portal/en/ index.html. 87  Opened for signature 22 November 1950, 131 UNTS 25, entered into force 21 May 1952. 88  Opened for signature 27 June 2013, entered into force 30 September 2016. 89  Opened for signature 9 September 1883, entered into force 5 December 1887. 90  Opened for signature 9 September 1883, entered into force 20 December 1996. 86

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unreasonable or discriminatory basis (Article 30(b)). This is lex specialis with respect to ICESCR Article 15, which posits a general right of access to culture. By establishing a limited mandatory exception to copyright law, the Marrakesh Treaty has overcome the opposition of copyright industry groups, who fear that creating mandatory exceptions could lead to dismantling the system of protection for copyright owners.91 This is therefore a clear example of an economic sector where granting accessibility requires that fundamental barriers be overcome. It is considered that the benefits to blind people, in terms of equity, education and empowerment, outweigh the private return generated by imposing a fee for accessing book repositories.92 While it is considered that the Marrakesh Treaty has significantly improved access to books for the disabled, it does not seem to have resolved the problem of the ‘book famine’, chiefly because non-digitalised books remain inaccessible. The digitalisation of books has increased over time, but, according to the Association of American Publishers, in 2019 out of almost US$26 billion in revenue for all books in the US, print books totalled US$22.6 billion, whilst e-books only totalled US$2.04 billion.93 According to some scholars, this might mean that States are not fulfilling their fundamental duty under CRPD Article 30, which provides that the parties take ‘all appropriate measures’ to grant access to culture.94 However, this ultimately depends on whether the obligation under CRPD Article 30 is a duty of means rather than an obligation of result.

5.5  T  he Microeconomics of Disability and Private International Law The increased mobility and interconnectivity of individuals and businesses in the globalised world raises issues of choice and enforcement of law in transnational relations where disability is a relevant element. What is the law governing disputes over assets and persons when the events they are involved in occur in different jurisdictions, and disability bears legal relevance to the dispute? Which jurisdiction, in the first place, applies to characterise a person as disabled? This latter question is

 Mitchell Silberberg & Knupp LLP, Notice of Inquiry and Request for Comments on the Topic of Facilitating Access to Copyrighted Works for the Blind or Other Persons With Disabilities, 74 Fed. Reg. 52,507, 13 November 2009. 92  Paul Harpur and Nicolas Suzor, ‘Copyright Protections and Disability Rights: Turning the Page to a New International Paradigm’ (2013) 36(3) UNSW LJ 745, at 770–771. 93  Lucy Handley, Physical Books Still Outsell E-books — And Here’s Why, 19 September 2019. 94  Harpur and Nicolas Suzor, ‘Copyright Protections’ (2013) at 773; Ilias Bantekas, Pok Yin Stephenson Chow, Stavroula Karapapa and Eleni Polymenopoulou, ‘Article 30: Participation in Cultural Life, Recreation, Leisure, and Sport’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 863, at 890–891. 91

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legitimate, given the non-limitative definition of disability provided in the preamble to the CPRD: ‘[p]ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments’,95 which leaves it to the contracting parties to opt for more specific definitions if they see so fit. As a result, there is a great variety in defining disability across jurisdictions, with many, including countries that have a disability protection framework, choosing not to define it at all.96 Most often the disability of one of the parties in a transnational legal relationship will not be relevant. When disability is relevant, the rules of private international law specifically designed for various legal fields (contracts, torts, family law, etc.) will apply to resolve the ‘conflict of laws’ concerning applicable rules. This can detrimentally impact the rights of a person with a disability. Indeed, disability often becomes relevant in a transnational legal relationship when protection is required for a disabled person. Among the challenges to disabled persons, for example, is the need to find individuals willing and able to assist or represent them in a cross-border problem, which is increasingly relevant in the circumstances of retirement abroad. To this end, an attempt to establish a uniform regulatory framework for the protection of vulnerable adults’ cross-border affairs was made by the Hague Convention on International Protection of Adults (‘CIPA’),97 adopted within the framework of the Hague Conference on Private International Law. Having entered into force in 2009, the CIPA complements the CRPD, which ‘harmonises’ the substantive law of the Member States as regards disability. The Convention seeks procedurally to protect persons involved in transnational legal relationships who, ‘by reason of an impairment or insufficiency of their personal faculties, are not in a position to protect their interests’ (Preamble). The scope of the CIPA is thus different from than that of the CRPD. While not using the term ‘disability’ explicitly, the CIPA promotes an understanding aligned with the concept of disability employed by the WHO, including an umbrella term for impairments, activity limitations and participation restrictions.98 Protection of disabled persons, for the specific purposes of the CIPA, is sought via the ‘[avoidance of] conflicts between their legal systems in respect of jurisdiction, applicable law, recognition and enforcement’ (Preamble). Under Article 1, the CIPA aims to resolve conflicts of laws for the determination of incapacity and protective regimes, such as guardianship and the administration of property. Article 5 of the Convention vests the State of ‘habitual residence’ with the power to take protective measures. This principle applies to both persons and property, in derogation from the principle of lex situs, as confirmed in Article 9, which lists those States from which the State of jurisdiction – the one where the vulnerable person habitually resides – can request protective measures.  Emphasis added.  Arlene S. Kanter, ‘The Globalization of Disability Rights Law’ (2003) 30(2) Syracuse Journal of International Law and Commerce 241, at 250. 97  Opened for signature 13 January 2000, (2000) 39 ILM 7, entered into force 1 January 2009. 98  WHO, International Classification of Functioning, Disability and Health (ICF) (2001) https:// www.who.int/standards/classifications/international-classification-of-functioningdisability-and-health. 95 96

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Under CIPA Article 13, the State of jurisdiction applies its own law, save a right to exceptionally apply the law of another State on proof of a substantial connection. Article 14 provides, however, that measures be implemented according to the law of the place of implementation. Article 22 establishes that measures taken by the authorities of a Contracting State be recognised in all other Contracting States. Importantly, under Article 27, the CIPA makes clear in strong language, resembling that of the highly successful 1958 New York Convention on the Recognition and Enforcement of Foreign Arbitral Awards,99 that ‘[m]easures taken in one Contracting State and declared enforceable, or registered for the purpose of enforcement, in another Contracting State shall be enforced in the latter State as if they had been taken by the authorities of that State’. As concerns the procedure for registration or declaration of enforceability, it has to be ‘simple and rapid’ (Article 25(2)). Article 28 requires all State Parties to designate a central authority for co-operation, particularly via the exchange of relevant information. The CIPA therefore institutes in some areas a more favourable regime for vulnerable adults, including persons with disabilities as defined by the CRPD, than the rules of private international law that would otherwise apply. By assisting disabled persons in managing their cross-border affairs via a clarification of the applicable law and adjudication, and via the recognition and enforcement of protective measures, the CIPA supports the realisation of several substantive rights prescribed by the CRPD.100 For example, access to justice, stipulated in Article 13 of the CRPD, is facilitated as individuals and families benefit from the internationally cooperative system established by the CIPA, greatly smoothening the management of cross-­ border legal affairs. Other provisions reinforced by the CIPA include CRPD Article 18, on the liberties of movement and nationality, Article 32, on international cooperation, Article 12, on equal recognition before the law, Article 3, on the autonomy of disabled adults, and Article 25, on health. On the other hand, the CIPA is quite limited in its noble aim of protecting vulnerable adults involved in transnational legal relationships, since it thus far only includes 13 contracting Parties, and presently excludes key States such has the US and China. Thus, for instance, Italy, which is not a Party to the Convention, adopts nationality as a criterion for determining jurisdiction under Article 43 of the 1995 Italian Private International Law Reform. Furthermore, some interpretive questions make the scope of application of the Convention uncertain, which may trigger ‘double jeopardy’ and disrupt uniformity. For example, during the travaux préparatoires the question whether or not physical impairment should trigger the application of the Convention was discussed. The predominant opinion, however, was that physical disability does not prejudice the ability of a person to protect his or her interests, and therefore does not fulfil the pre-requisites under Article 1 of the CIPA.101  Opened for signature 10 June 1958, 330 UNTS 3, entered into force 7 June 1959.  Philippe Lortie and Maja Groff, The Hague Convention of 13 January 2000 on the International Protection of Adults: Note (European Union, 2012). 101  See Sara Tonolo, ‘The Protection of Persons with Disabilities in Private International Law’ (2013) 5(1) Cuadernos de Derecho Transnacional 273, at 275 ff. 99

100

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Additional causes of disruption include the fact that the CRPD outlines only basic guidelines for harmonising disability law, with the result that different legal systems actually adopt different regulatory mechanisms. For instance, the conditions for the definition of legal incapacity under Brazilian legislation cannot be sic et simpliciter implemented in another legal system, but rather require interpretation and adjustment. Specific treaties, however, such as the 1985 Hague Convention on the Law Applicable to Trusts and Their Recognition,102 establish rules providing guidance for the cross-border application of particular legal institutions.103

5.6  Conclusion Society must move decidedly in the direction of a sustainable economy, which entails eradicating poverty and ensuring environmental protection, with particular regard to the existential problem of climate change. Persons with disabilities are often among the poorest in society and are significantly more vulnerable to climate change, particularly in developing countries. This compels the adoption of an inclusive paradigm for the disabled, centred on independent living, equal employment opportunities and full participation in decision-making. Reportedly, the demand of disability services is not adequately satisfied, especially in developing countries. The OHCHR assumes that States that do not adopt adequate policies should be considered responsible for breaching essential human rights obligations. Within this framework, the most fundamental need is employment: whilst disability-inclusive businesses prove more profitable than disability-exclusive businesses, the ratio of employed disabled persons is significantly lower than that of other persons. Espousing the concept of ‘different ability’ is thus crucial to the functioning of the economy. Public institutions, such as the World Bank, UNDP, UNESCO, ILO and WHO have each taken a variety of targeted initiatives, ranging from investment planning to assistive technology. Among all, the development of inclusive ICT, which is particularly supported by UNESCO, shows the most potential. ICT allows persons with disabilities to participate online in financial decisions and to remotely control work, travel or home appliances, among other possibilities. In light of the significance of access to culture for inclusiveness, the WIPO has created mandatory exceptions to international copyright obligations, facilitating the delivery of digitised works accessible to the disabled, thus prioritising public interest over private profit. Conversely, only to a limited extent initiatives of the IMF and WTO embed the language of disability. Disability raises key challenges not only from a macroeconomic perspective, but also at the microeconomic level, under private international law. The problem

102 103

 Opened for signature 1 July 1985, entered into force 1 January 1992.  Tonolo, ‘The Protection’ (2013) at 279.

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essentially lies in establishing uniform regulation so as to create a predictable framework for trade and investment on a global scale, fostering clarity and certainty in economic relations. For instance, it is necessary to determine clear criteria that trigger the law applicable to property assets owned by the disabled. Relevant conventions have not reached a sufficient level of participation to establish uniform principles. In the matter of property, for example, whilst the CIPA supports the application of the law of residence, some States apply the principle of nationality and others the law of the State where property is situated, triggering fragmentation and compelling a case-by-case approach.

References104 Documents Accenture. 2018. Getting to Equal: The Disability Inclusion Advantage. Agreement on the Importation of Educational, Scientific, and Cultural Materials was adopted in the context of UNESCO, Opened for signature 22 November 1950, 131 UNTS 25, entered into force 21 May 1952. Australian Government. 2013. Accessibility Design Guide: Universal Design Principles for Australia’s Aid Program. Australian Government. 2015. Development for All: Strategy for Strengthening Disability-­ Inclusive Development in Australia’s Aid Program 2015–2020. Convention for the Protection of Literary and Artistic Work, Opened for signature 9 September 1883, entered into force 5 December 1887. Convention on International Protection of Adults, opened for signature 13 January 2000, (2000) 39 ILM 7, entered into force 1 January 2009. Convention on the Recognition and Enforcement of Foreign Arbitral Awards, Opened for signature 10 June 1958, 330 UNTS 3, entered into force 7 June 1959. Convention on the Law Applicable to Trusts and Their Recognition, opened for signature 1 July 1985, entered into force 1 January 1992. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. Copyright Treaty, Opened for signature 9 September 1883, entered into force 20 December 1996. CteRPD. 2016. Concluding Observations on the Initial Report of Guatemala, UN Doc CRPD/C/ AUS/CO/2-3. CteRPD et al. 2019. Joint Statement on Human Rights and Climate Change. Darvishy, A., Erocal, D. & Manning, J. 2019. Delivering Together for Inclusive Development: Digital Access to Information and Knowledge for Persons with Disabilities. Disability Investment Group 2009. Report on A New Disability Policy Framework for Australia. HRCte. 2009. Human Rights and Climate Change, Resolution 10/4. ILO. 1958. Discrimination (Employment and Occupation) Recommendation, No. 111. ILO. 1975. Resolution Concerning Vocational Rehabilitation and Social Reintegration of Disabled or Handicapped Persons. ILO. 1983. Vocational Rehabilitation and Employment (Disabled Persons), Recommendation No. 168.

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ILO. 2002. Managing Disability in the Workplace: Code of Practice. ILO. 2009. The Price of Exclusion: The Economic Consequences of Excluding People with Disabilities from the World of Work. ILO. 2015a. Decent Work for Persons with Disabilities: Promoting Rights in the Global Development Agenda. ILO. 2015b. Disability Inclusion Strategy and Action Plan 2014-17. ILO. 2020. Disability Inclusion in Company Responses to COVID-19. Discrimination (Employment and Occupation) Convention, opened for signature 25 June 1998, ILO No. 111, entered into force 15 June 1960. Social Security (Minimum Standards) Convention, ILO No 102, entered into force 27 April 1955. International Covenant on Economic, Social and Cultural Rights, opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. IPCC. 2018 Global Warming of 1.5°C. OHCHR. 2020. Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc. A/HRC/44/30. Silberberg & Knupp LLP. 2009. Notice of Inquiry and Request for Comments on the Topic of Facilitating Access to Copyrighted Works for the Blind or Other Persons With Disabilities, 74 Fed. Reg. 52507. Treaty to Facilitate Access to Published Works by Visually Impaired Persons and Persons with Print Disabilities, opened for signature 27 June 2013, entered into force 30 September 2016. UN Department of Economic and Social Affairs. 2018. Disability and Development Report. UN GA. 1948. Universal Declaration of Human Rights, Res. 217(III)A. UN GA. 2015. Transforming Our World: The 2030 Agenda for Sustainable Development, A/ RES/70/1. UNDP. 2018. Disability Inclusive Development in UNDP Guidance and Entry Points. UNESCO. 2014. Model Policy for Inclusive ICTs in Education for Persons with Disabilities. UNESCO. 2019. Empowering Persons with Disabilities through ICTs. Vocational Rehabilitation and Employment (Disabled Persons) Convention, opened for signature 20 June 1983, ILO No 159, entered into force 20 June 1985. WHO. 2001. International Classification of Functioning, Disability and Health (ICF). World Bank. 2017. Including Persons with Disabilities in Water Sector Operations: A Guidance Note. World Bank and WHO. 2011. World Report on Disability. World Bank Group. 2018. Disability Inclusion and Accountability Framework. World Bank Group. 2021. Criteria for the World Bank’s Disability-Inclusive Investment Project Financing in Education. World Commission on Environment and Development. 1987. Our Common Future, Report. World Development Report. – Digital Dividends.

Bibliography Bantekas, I., Chow, P. Y. S., Karapapa, S., & Polymenopoulou, E. (2018a). Article 30: Participation in cultural life, recreation, leisure, and sport. In I.  Bantekas, M.  A. Stein, & D.  Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (p. 863). Oxford University Press. Bantekas, I., Stein, M. A., & Anastasiou, D. (Eds.). (2018b). The UN Convention on the Rights of Persons with Disabilities: A commentary. Oxford University Press. Carey, G., et al. (2019). How is the disability sector faring? Centre for Social Impact and UNSW. Culyer, A. J., & Newhouse, J. P. (Eds.). (2000). The handbook of health economics. Elsevier. De Beco, G. (2021). Disability in international human rights law. Oxford University Press.

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Handley, L. (2019). Physical books still outsell E-books — And here’s why, CNBC. Harpur, P., & Suzor, N. (2013). Copyright protections and disability rights: Turning the page to a new international paradigm. UNSW LJ, 36(3), 745. Haveman, R., & Wolfe, B. (2000). The economics of disability and disability policy. In A. J. Culyer & J. P. Newhouse (Eds.), The handbook of health economics (p. 995). Elsevier. Kanter, A. S. (2003). The globalization of disability rights law. Syracuse Journal of International Law and Commerce, 30(2), 241. Koninga, P., & van Sonsbeek, J.-M. (2017). Making disability work? The effects of financial incentives on partially disabled workers. Labour Economics, 47, 202. Lortie, P., & Groff, M. (2012). The Hague convention of 13 January 2000 on the international protection of adults: Note. European Union. Mitra, S., Posarac, A., & Vick, B. (2013). Disability and poverty in developing countries: A multidimensional study. World Development, 41, 1. Parasyn, C., Mines, K., Powaseu, I., Ariyani, D., & Power, K. (2019). Disability and aid for inclusive trade. In Aid for inclusive trade, extending the benefits of trade to reduce poverty (Vol. 18). Raja, D. 2016. Bridging the disability divide through digital technologies: Background paper for the 2016 world development report – Digital dividends. Reid, C. (2017). Ending the book famine: The Marrakesh Treaty. Tonolo, S. (2013). The protection of persons with disabilities in private international law. Cuadernos de Derecho Transnacional, 5(1), 273.

Chapter 6

Right to Work of Persons with Disabilities: The Public-Private Interface Kip Werren and Guy Charlton

Contents 6.1  I ntroduction 6.2  K  ey ILO Initiatives 6.3  Access to the Labour Market 6.3.1  Avoiding Discrimination 6.3.2  Women with Disabilities and Access to Labour 6.3.3  Intellectual Disability and Access to Work 6.4  Reasonable Accommodation 6.5  Accessibility 6.6  The Obligation to Fulfil the Right to Work of Persons with Disabilities: Interaction between the State and the Private Sector 6.7  Conclusion References

 132  133  135  135  137  140  142  144  145  148  149

Abstract  Within the regulatory framework outlined by the International Labour Organisation, the Convention on the Rights of Persons with Disabilities establishes that the State must take a proactive approach and fulfil the right to work of persons with disabilities (different abilities). This entails interaction between the public and private sector. States have indeed acted by means such as the creation of quotas in favour of the disabled and other initiatives, as shown by the Lutizh Centre in Ukraine. However, although statistics vary from country to country, they demonstrate that the percentage of persons with disabilities with an employment is lower than that of other groups in society in both developed and developing countries. People with disabilities are often stuck in sheltered or supported employment and the situation is worse for vulnerable sub-groups, whereby women are particularly disadvantaged. Within the context of inclusive sustainability, it is therefore necessary that the State intervene comprehensively to improve: (1) access to labour; (2) reasonable accommodation; and (3) workplace accessibility. It remains to be seen,

K. Werren (*) · G. Charlton School of Law, University of New England, Sydney, NSW, Australia e-mail: [email protected]; [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_6

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however, how rhetoric is translated into practice: whilst States have a duty to ­eliminate labour discrimination immediately, they only have an obligation to implement labour rights progressively and to the maximum of their capacity. Keywords  Disability (different ability) · Right to work · Access to labour · Reasonable accommodation · Accessible workplace · State · Businesses

6.1  Introduction Persons with disabilities, rectius, different abilities, are likely to experience lower levels of employment, pay and poorer working conditions as compared to the rest of the population. It is not unusual that people with disabilities are employed part-time and temporarily, thus experiencing limited prospects for career improvement. Stereotypes, inadequate education, and barriers to training and access that limit options for persons with disabilities (for instance, accessible public transport) are root causes of this situation, underpinning the widely held prejudice that people with disabilities are unfit for the open labour market. Article 23 of the Universal Declaration on Human Rights (‘UDHR’)1 establishes the right of ‘everyone’ to work, including free choice of employment, just and favourable conditions of work, equal pay for equal work, just and favourable remuneration for oneself and the family and the right to form trade unions. The International Covenant on Civil and Political Rights (‘ICCPR’)2 impliedly recognises the right to work under Article 8. The International Covenant of Covenant on Economic, Social and Cultural Rights (‘ICESCR’) includes the right of ‘everyone’ to the opportunity of earning a living by work freely chosen or accepted, whereby the State has to take appropriate safeguarding steps under Article 6(1). Given that the right to work falls under second-generation fundamental rights, States have a duty to take a proactive approach and fulfil it, by safeguarding and promoting its enjoyment. Like many other economic, social and cultural rights, the implementation of labour rights is proactively subject to progressive realisation under ICESCR Article 2(1). In addition to these Treaties, the International Labour Organization (‘ILO’) has adopted a number of instruments applicable to the right to work, such as the Declaration on Fundamental Principles and Rights at Work.3 Within this framework, Article 27 of the United Nations (‘UN’) Convention on the Rights of Persons with Disabilities (CRPD)4 outlines the legal context within which States are to fulfil the right to work for persons with disabilities. In light of  United Nations General Assembly, Resolution 271(III)A of 10 December 1948.  Opened for signature 16 December 1966, 999 UNTS 171 and 1057 UNTS 407, entered into force 23 March 1976. 3  ILO, Declaration on Fundamental Principles and Rights at Work, Adopted by the International Labour Conference at Its Eighty-sixth Session, Geneva, 18 June 1998 (Annex revised 15 June 2010) 4  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. 1 2

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the general principle of non-discrimination, CRPD Article 27 acknowledges the right of the disabled to work ‘on an equal basis with others’, including the ‘opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.’ According to the CRPD, a State must not only employ persons with disabilities in the public sector (Article 27(1)(e)), but it must also promote the employment of the disabled in the private sector by adopting ‘appropriate policies and measures’, including ‘affirmative action programmes, incentives and other measures’ (CRPD Article 27(1)(h)). These actions are part of the commitment underlying the Convention to facilitate independent living in the fashion that opportunities for working can provide. Fundamentally, based on non-discrimination, the right to work of persons with disabilities compels the State to act by ensuring access to labour and reasonable accommodation, including special services to eliminate direct discrimination: different situations must be addressed differently.5 Labour law and policy are essential components of the economy and cover issues spanning the right to work, working conditions and trade unions. This contribution contextualises such themes with respect to the disabled, by outlining key law and policy problems that disability raises within the context of the right to work. The chapter explores these issues via a three-folded taxonomy, based on: (1) access to labour; (2) reasonable accommodation; and (3) workplace accessibility. After outlining this basic categorisation and key problems, the chapter explores the State obligation to take action and fulfil labour rights for the disabled and how this leads to interacting with the private sector in ensuring the effective enjoyment of such rights. The impact of key institutions in the area, particularly the UN Committee on the Rights of Persons with Disabilities (‘CteRPD’) and the International Labour Organisation (‘ILO’), is taken into account in the course of the analysis.

6.2  Key ILO Initiatives The ILO has undertaken key initiatives to fulfil the labour rights of disabled people. As far as 1955, the ILO Vocational Rehabilitation (Disabled) Recommendation (No. 99)6 established the fundamental principles to harmonise national legislation in the area, regulating vocational guidance, training, placement and adaptation. It also established inclusiveness via quotas, reserved occupations, cooperatives and sheltered workshops. The Recommendation included special provisions for disabled children and young persons and specified the proactive role of the ILO. It invited States to adopt measures not only to directly facilitate inclusiveness, but also to prompt employers to adopt such measures and ensure inclusiveness (s. III.9). More 5  See HRCte, Thematic Study on the Work and Employment of Persons with Disabilities, UN Doc. A/HRC/22/25 (2012) and Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 135. 6  Adopted 22 June 1955.

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generally, Article 5.2 of the 1958 ILO Discrimination (Employment and Occupation) Convention (No. 111)7 and its accompanying Recommendation8 established the possibility for any member to adopt, in consultation with representative organisations of employers and workers, special measures to exclude indirect discrimination vis-à-vis a set of vulnerable groups, including the disabled. As far as 1965, the Resolution on Vocational Rehabilitation of Disabled Persons9 outlined techniques for Member States to support the training of disabled persons, with a view to new forms of employment and the placement of disabled people in suitable employment. Subsequently, Article 13 of the 1967 Invalidity, Old-Age and Survivors’ Benefits Convention (No. 128)10 established an obligation for Member States to afford rehabilitation services and further the placement of the disabled in suitable employment conditions. In 1983, the Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159),11 as complemented by Recommendation No. 168,12 required member States to practice, formulate, implement and periodically review a national policy on the vocational rehabilitation and employment of disabled people. In this way, the obligation to fulfil the right to work was made comprehensive. This obligation is subject to tailoring to national conditions. The purpose was to further ‘integration or reintegration’ in society (Article 1(2)), moving definitely away from the ‘caring’ paradigm. Article 4 underscored the need for ‘[e]quality of opportunity and treatment for disabled men and women workers’ and the necessity for Members to adopt ‘[s]pecial positive measures aimed at achieving effective equality between disabled workers’, excluding indirect discrimination. After 1983, ILO activity with respect to disability has been channelled within the context of initiatives that eventually led to the adoption of the CPRD in 2006, notably Article 27, on the right to work. However, the ILO has adopted a set of non-­ binding initiatives. In addition to the 2001 Code of Practice on Managing Disability in the Workplace, notable initiatives include the 2014 Guidelines on Achieving Equal Employment Opportunities for People with Disabilities through Legislation and the 2016 Practical Guide on Promoting Diversity and Inclusion through Workplace Adjustments.

 Opened for signature 25 Jun 1958, entered into force 15 June 1960.  Discrimination (Employment and Occupation) Recommendation, 1958 (No. 111), adopted 25 June 1958. 9  Adopted 23 June 1965. 10  Opened for signature 29 June 1967, entered into force 1 November 1969. 11  Opened for signature 20 Jun 1983, entered into force 20 Jun 1985. 12  Vocational Rehabilitation and Employment (Disabled Persons) Recommendation (No. 168), adopted 20 June 1983. 7 8

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6.3  Access to the Labour Market 6.3.1  Avoiding Discrimination Article 27 of the CRPD sets out a comprehensive set of provisions that establish the legal framework for the right to work. CRPD Article 27(1)(a) prohibits ‘discrimination on the basis of disability with regard to all matters concerning all forms of employment, including conditions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions’. Article 27(1)(b) establishes ‘the rights of persons with disabilities, on an equal basis with others, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions’. Article 27(1)(e) further commits States to promoting ‘employment opportunities and career advancement for persons with disabilities in the labour market’, including ‘assistance in finding, obtaining, maintaining and returning to employment’. Article 27(1)(f)-(h) fosters opportunities for self-employment and employment in the public and private sectors, including affirmative action programmes, incentives and other measures. Article 27(1)(j)-(k) promotes ‘the acquisition by persons with disabilities of work experience in the open labour market’ and ‘vocational and professional rehabilitation, job retention and return-to-work programmes for persons with disabilities.’ This language expands on the terminology found in the Universal Declaration of Human Rights and the ICESCR and outlines a set of obligations for State Parties to create the conditions that facilitate and entrench the employment of individuals with disabilities.13 Despite such comprehensive regulation, for many persons with disabilities, informal or ‘alternative’ employment is the only concrete working option, particularly in the form of sheltered employment and supported self-employment. Sheltered employment takes place in separate settings, via working arrangements and outputs that are lower than those of the open market. While such a situation is commonly regarded as a transition towards the open labour market in a non-disability setting, in practice, such employment has become the standard. The lawfulness of sheltered employment is problematic. Work conditions are often substandard and the employee is effectively unable to move to other employment, in breach of the principles of equal access to work in the labour market and non-discrimination, as underscored by the Committee on Economic, Social and Cultural Rights (‘CteESCR’).14 This was discussed in the context of the process of negotiation of the 1955 ILO Vocational Rehabilitation Recommendation No. 99, the 1993 Standard

 Ilias Bantekas, Facundo Pennilas and Stefan Trömelat, ‘Article 27: Work and Employment’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 764, at 767. 14  CESCR, General Comment No. 5 on Persons with Disabilities (1994) at para. 21. 13

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Rules on the Equalization of Opportunities for Persons with Disabilities15 and the 1983 ILO Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159).16 Self-employment and supported employment do not raise as many problems as sheltered employment. Self-employment is often an involuntary outcome of the lack of opportunities persons with disabilities have in other types of employment. Supported employment involves on-the-job training in an open workplace, including learning alongside a job coach. Small businesses, mobile work crews and enclaves within a company are other forms of supported employment. Supported employment is by its nature temporary and should ideally terminate with an offer of full employment.17

Unemployment rate People with different abilities Other people 0

20

40

60

80 100

Unemployment rate for people in the labour force based on disability. (Source: Australian Institute of Health and Welfare, People with disability in Australia, Web Report, 2 October 2020)

In order to eliminate the disparities engendered by practices such as sheltered employment and to make practices such as supported employment a viable pathway to full employment, the CRPD imposes on State Parties a duty to raise awareness among employers and the general public as concerns the right to work of persons with disabilities. Furthermore, the State and private businesses must develop relevant procedures, such as adequate recruitment processes, including advertising, interviewing and other selection processes, as well as employment conditions and terms, such as training, work hours, leave, remuneration rates, promotion, termination and safety. For instance, accommodation processes for workers who acquire a

 UN General Assembly, Standard Rules on the Equalization of Opportunities for Persons with Disabilities, A/RES/48/96, 20 December 1993. 16  ILO, Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) 20 June 1985. See also Arthur O’Reilly, The Right to Decent Work of Persons with Disabilities (2007) at 67. 17  O’Reilly, The Right (2007) at 71. 15

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disability require that employers monitor recovery and implement rules on return to work.18 An economic analysis of the Organisation for Economic Cooperation and Development (‘OECD’) demonstrates that more than one quarter of disabled people outside the labour market can enter it where appropriate support is provided.19 However, integration must take place via a comprehensive approach, recognising the varying needs of individuals, demographic differences among people with disabilities, the various types of disabilities (physical and mental), and health problems.20 The adoption of public policies, such as workplace accessibility regulations, income support schemes and a National Disability Insurance Scheme, assists the transition to meaningful employment.21 The 2002 ILO Code of Practice on Managing Disability in the Workplace gives employers practical guidance on work accessibility.22 The Code suggests, for instance, that employers invite applications from persons with disabilities and include a statement on equal opportunity in recruitment processes. Thus, the Code invites employers to consult with employment services for the disabled and to ensure that vacancies are made available in a format that the disabled can access.23

6.3.2  Women with Disabilities and Access to Labour One of the greatest challenges for the labour rights of the disabled is that of discrimination against women with disabilities at work. Reportedly, less than 40% of disabled women have a job, compared to 44.9% of men with disabilities; furthermore, women with disabilities have twice as little chance of finding a position when compared to disabled men.24 They are also underrepresented in managerial positions, and overrepresented as sales, clerical and service workers.25 Women also enjoy fewer benefits than men: the wage gap between disabled women and men is

 Kathy Padkapayeva, Andrew Posen, Amin Yazdani, Alexis Buettgen, Quenby Mahood & Emile Tompa, Workplace Accommodations for Persons with Physical Disabilities: Evidence Synthesis of the Peer-reviewed Literature (2017) 39(21) Disability and Rehabilitation 2134, at 2141. 19  The Economic Benefits of Disability Employment, Estimates of the Labour Supply Impacts of the OECD Integration Scenario and the National Disability Insurance Scheme using SDAC 2009, November 2011, at 19. 20  Ibid. 21  Ibid. 22  Adopted on 13 December 2002. 23  O’Reilly, The Right (2007) at 20, paras 4.1.1 and 4.1.2. 24  Trade Unions and Workers with Disabilities: Promoting Decent Work, Combating Discrimination Labour Education, No. 1372004/4, at 20. 25  Diane Lynn Smith, ‘Employment Status of Women with Disabilities from the Behavioral Risk Factor Surveillance Survey (1995–2002)’ (2007) 29(2) Work 127. 18

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around 40%.26 Besides these lower opportunities for disabled women, disability impacts female employment more generally, thus increasing its discriminatory consequences. In many societies, women traditionally carry the major obligations of caring for disabled people within families and communities, which can negatively impact on their right to work. Discrimination is grounded in societal stereotypes: disabled women face dual discrimination in the labour market, because of both their gender and disability. According to O’Reilly, women are perceived as ‘passive, dependent, and not capable of or interested in taking up an occupation leading to employment.’27 Blind women in Africa and Asia have such a low societal status that their chances of finding a job are extremely limited.28 The situation is worsened by physical barriers, such as inaccessible means of public or private transport.29 However, while it is the general trend, this is not true of all countries; for instance, in Australia the rate of unemployment is higher among males than females.30 Poverty, limited health care, epidemics and war are additional discriminatory factors for disabled women in accessing the open labour market. There is a strong ‘circular link’ between poverty and difficulties in employment: without adequate community support, women with disabilities face a significant financial burden, which can lead to begging and solicitation. Pauperisation fosters low levels of education and deprivation of basic reproductive health care.31 States are increasingly aware of the interconnected nature of these problems. In Ethiopia, for example, tackling illiteracy, inadequate remuneration and difficulties in accessing credit is considered essential to helping women generate income and escape poverty.32 The problem of the inclusion of women with disabilities in the open labour market was raised for the first time at the 1980 Conference on Women in Copenhagen33 and subsequently at the 1985 Conference in Nairobi, where women with disabilities were classified as a ‘vulnerable’ group.34 The 1995 Beijing Platform of Action  Martha N.  Ozawa and Yeong Hun Yeo, ‘Work Status and Work Performance of People with Disabilities’ (2006) 17(3) Journal of Disability Policy Studies 180. 27  O’Reilly, The Right (2007) at 49. 28  Augustina Naami, ‘Breaking the Barrier: Ghanaians Perceptions about the Social Model’ (2014) 25(1) Disability, CBR and Inclusive Development 21, at 25. 29  Natacha David, ‘Women with Disabilities – Dual Discrimination’, in Trade Unions and Workers with Disabilities: Promoting Decent Work, Combating Discrimination, Labour Education, No. 137, 2004/4, at 20. 30  See Australian Institute of Health and Welfare, People with Disability in Australia, Web Report, 2 October 2020, https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/ contents/employment/unemployment. 31  Augustina Naami, ‘Disability, Gender, and Employment Relationships in Africa: The Case of Ghana’ (2015) 4(1) African Journal of Disability 95. 32  David, Women with Disabilities (2004) at 20. 33  World Conference of the UN Decade for Women, Quality, Development and Peace, Report, A/ CONF.94/35 (1980). 34  World Conference of the UN Decade for Women, Report to Review and Appraise the Achievements of the UN Decade for Women, Equality, Development and Peace (1985). 26

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acknowledged the importance of involving women with disabilities in development projects, including the question of employment discrimination and access to education and training.35 The Manifesto on the Rights of Women and Girls in the European Union, first adopted by the European Disability Forum in 1997 and later reviewed in 2011, outlines a framework supporting the employment of women with disabilities. The Manifesto compels promotion of the inclusion of women with disabilities in the labour market via subsidies fostering stable and quality employment, improving skills and including measures ensuring access and adaptation to the workplace.36 The Manifesto also underscores the importance of taking measures aiming to reconcile family and professional life, awareness-raising and training social actors.37 Article 4 of the 1983 ILO Convention No. 159 on Vocational Rehabilitation and Employment (Disabled Persons)38 underscores the importance of equality of opportunities and treatment for disabled men and women. The 1998 General Survey on Convention No. 159 and Recommendation No. 168 highlight that most countries apply the principle of equality of opportunities for the disabled, but these initiatives do not distinguish between man and women, who are a vulnerable group and are thus indirectly discriminated.39 The 2010 Lusaka Declaration addresses the necessity of achieving full participation in training and employment for people with intellectual disabilities.40 The Declaration highlights the poor implementation of the Vocational Rehabilitation and Employment Convention in Africa and invokes the adoption of targeted projects and strategies ‘focusing on promoting training and employment as well as other opportunities for persons with disabilities, with an explicit focus on people with intellectual disabilities’ and ‘women and girls with intellectual disabilities’.41 Whilst special programmes for disabled people are often introduced without accounting for the fact that women with disabilities are a vulnerable group and need specific support not to be discriminated against, companies have started to adopt meaningful initiatives to address this discrepancy. With nearly 428,000 employees worldwide, the Sodexo Group is a global leader in Quality of Life services in around 80 countries, ranging from catering and food services to employee incentive schemes. Company policies place a specific focus on gender, particularly fostering

 Fourth World Conference on Women, Beijing Declaration and Platform for Action, 15 September 1995. 36  European Disability Forum, Second Manifesto on the Rights of Women and Girls with Disabilities in the European Union A Toolkit for Activists and Policymakers (2011) at para. 12.3. 37  Ibid. 38  Opened for signature 20 June 1983, ILO 195, entered into force 20 June 1985. 39  Committee of Experts on the Application of Conventions and Recommendations, Vocational Rehabilitation and Employment of Disabled Persons, General Survey on the Reports on the Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) and Recommendation (No 168) (1998) at para 114. 40  ILO, People with Intellectual Disabilities: Achieving Full Participation in Training and Employment, Lusaka Declaration (2010). 41  Ibid. 35

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the role of women with disabilities in operational and leadership positions. In 2006, the company established a Group’s Diversity and Inclusion team, and, within this framework, Sodexo’s DisAbility Voice, an organ that affords opportunities for dialogue, training and sharing best practices across countries, holding a webinar every two months to discuss local company workplaces.42

6.3.3  Intellectual Disability and Access to Work Individuals who suffer from mental disabilities can have a particularly difficult time achieving employment, as evidenced by their high unemployment rate. As learning is an essential component of labour, intellectual disability raises serious challenges in accessing work: there are certain tasks and challenges these individuals simply cannot do for safety or other reasons and there are places and tasks in the workplace that are not appropriate for them. When employed, a person with intellectual disability usually requires the support of a fellow employee or a work mentor. As such, necessary support must be put in place to allow progressive learning and attitudinal change must take place within the workplace and community, facilitating their full integration in society. The UN Declaration on the Rights of Mentally Retarded Persons43 does not embed a specific provision on the right to work, but only states that ‘the mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings’ (s. 1).44 The implication is that transitioning to work for people with intellectual disabilities in the open labour market can only be successful if it commences at the stage of secondary education and includes real world experience.45 Nevertheless, these individuals often require additional measures to achieve and maintain employment. Individuals with intellectual disabilities, which are often classified as forms of severe disability,46 for instance, autism and severe emotional disturbance, need targeted support based on a case-by-case approach centred on the individual. This is often required in each of the different phases of supported employment: help to finding the right job, and due support and assistance in performing it. This can be done via a job coach who helps to identify suitable work, supports the person throughout the application process and assesses needs and strengths. Suitable posts are best found by identifying work that fits with the individual, via the practice of job matching, rather than by adjusting work duties, according to the practice of job carving. Reportedly, the sheltered workshop model

 ILO, Business as Unusual: Making Workplaces Inclusive of People with Disabilities (2014) at 25.  UN GA Resolution 2856 (XXVI), 20 December 1971, emphasis added. 44  Emphasis added. 45  ILO and Irish Aid, People with Intellectual Disabilities  – Opening Pathways to Training and Employment in the African Region (2010) at 9. 46  Ibid., at 10. 42 43

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is not viable to allow people with intellectual disabilities to access the open labour market, because this type of employment situation does not prompt the most capable workers to leave sheltered workshops. Ongoing support is the preferable model.

Unemployment rate People with severe disability People with non-severe disability 0

20 40 60 80 100

Unemployment rate for people in the labour force based on profound or severe disability. (Source: Australian Institute of Health and Welfare, People with disability in Australia, Web Report, 2 October 2020)

People with intellectual disabilities employed in the labour market are quite positive about their experience and state that inclusion is fundamental to facilitating their full participation in society.47 Yet the difficulties and shortcomings of programmes targeting the right to work for intellectually disabled people are still evident in many States. For instance, Australia has implemented support programmes for people with moderate needs, affording persons with intellectual disability a variety of work experiences for two years after leaving school in order to find a suitable occupation. The programmes develop training ‘on the job’, with permanent placement in open employment and wages calculated in light of productivity. However, the programmes fail to address the needs of more severe disabilities. In addition, the proffered training is not always adequately targeted. For example, in Zambia people with intellectual disabilities are reportedly trained in weaving and leatherwork despite there being no companies which make shoes (a main application of these skills) in the country.48 In several African countries, people with intellectual disabilities face enormous barriers when trying to find an occupation. For instance, women are almost entirely absent from vocational training courses and the wider working population in Zambia. Support programmes are nonetheless evolving. To this end, Zambia has developed an inclusive national disability policy. Within this framework, several initiatives have taken place; for instance, in collaboration with the Finnish Association on Intellectual Development, the Inclusion Programme has allowed the establishment of a module addressing the under-representation of women with  Ariella Meltzer, Shona Bates, Sally Robinson, Rosemary Kayess, Karen R. Fisher and Ilan Katz, What Do People With Intellectual Disability Think about Their Jobs and the Support They Receive at Work? A Comparative Study of Three Employment Support Models (2016) at 33–34. 48  Ibid., at 15. 47

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intellectual disabilities at work, by fighting negative stereotypes and training disabled persons for employment.49 Similarly, in Ethiopia, the National Association on Intellectual Disabilities focuses on skill training to facilitate finding a job in the labour market and ensure independent living. This organisation has established a vocational training centre, a business finance programme and medical services for clients.50

6.4  Reasonable Accommodation Workplace adjustment necessarily carries cost, disincentivising the recruitment of persons with disabilities: reasonable accommodation is an individual requirement.51 CRPD Article 2 establishes that reasonable accommodation entails ‘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’. CRPD Article 27(1)(i) requires that State Parties take appropriate steps, including through legislation, to ensure that reasonable accommodation is afforded to persons with disabilities in the workplace. Thus, legislation must compel both the public and private sectors to provide reasonable accommodation for employees with disabilities. Governments should develop policies that promote and regulate flexible and alternative work arrangements that reasonably accommodate individual needs, including adjustment of equipment and working time.52 Reportedly, the implementation of reasonable accommodation has properly taken place only in some common law countries, but it has been slow in other States.53 The ILO Code of Practice on Managing Disability in the Workplace establishes that, since the recruitment phase, employers should be ready to make necessary adjustments to maximise the capacities of their employees (s. 4(1)(4)).54 Therefore, access to labour and workplace accessibility are different but interrelated aspects of the labour rights of persons with disabilities. A holistic review of accommodation through different countries significantly divides it into three categories: (1) physical and technological modification; (2) workplace flexibility; and (3) social accommodation.55

 ILO and Irish Aid, People with Intellectual Disabilities (2010) at 14.  Ibid., at 17–18. 51  HRCte, Thematic Study (2012) at 3, para. 32. 52  Ibid., at para. 31. 53  Ibid., at para. 32. 54  ILO, Managing Disability in the Workplace (2002) at 20–21. 55  Kathy Padkapayeva, Andrew Posen, Amin Yazdani, Alexis Buettgen, Quenby Mahood & Emile Tompa, ‘Workplace Accommodations for Persons with Physical Disabilities: Evidence Synthesis of the Peer-Reviewed Literature’ (2017) 39(21) Disability and Rehabilitation 2134, at 2137 ff. 49 50

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Physical and technological modification (1) concerns both the built environment and assistive devices. Changes to the built environment necessitate action such as adjusting workstations to better fit the needs of the disabled, for instance, building ramps, automatic doors and adequate ergonomics. Assistive devices include the adoption of technology to minimise barriers in the workplace, such as screen readers and large-print keyboards. Workplace flexibility (2) involves measures such as job modification, personal assistance services, and targeted scheduling, including flexible work hours and part-time work. Social accommodation (3) includes measures such as workplace culture and support; for instance, it is suggested that employers complement workplace accommodations via strategies such as employing trained human resource specialists to promote inclusive practices. A notable successful social accommodation strategy has been undertaken by Carrefour Brazil. Since 2012, Carrefour Brazil has adopted a corporate diversity programme fostering mutual respect between all employees, giving directors and managers specialised training on diversity management, thus transforming the organisational culture in favour of inclusiveness. Where there are deficiencies in these elements, accommodations and remedies include education and training of employers and workers, on-site evaluation of technology and regular reviews.56 Costs of course vary and require a case-by-case balance between the needs of the employer and those of the employee. According to the 2016 ILO Practical Guide on Promoting Diversity and Inclusion through Workplace Adjustments, whether accommodation is disproportionate or not depends not only on financial cost, but also on other circumstances, such as the accommodations impact on the overall work process, the size of an enterprise, available public funding and the length of the employment contract.57 In order to achieve effectiveness, it is important that legislation precisely outlines the various defences for not accommodating the needs of a disabled person, thereby limiting the prospects of litigation and the possibility that employers avoid obligations. Procedurally, a useful tool for addressing discrimination is shifting the burden of proving non-­ discrimination to the employer. The situation in South Africa illustrates the complexity of ensuring adequate accommodation and the discrepancy that often exists between the legislative framework and its practical implementation. In the 1980s, disabled people in this country mobilised to be fully integrated in the labour market, and thus in the State economy. Prior to 1994, South Africa was excluded from the global economy and the government essentially addressed disability issues through the lens of race and in the context of a deeply divided society. This situation changed with the end of apartheid. The Labour Relations Act 1995 sought to foster the integration of persons with disabilities into the labour market. The Constitution of South Africa (promulgated in 1997) and the Employment Equity Act 1998 magnified the protections in the

 Ibid., at 2137.   ILO, Achieving Equal Employment Opportunities for People with Disabilities through Legislation (2014) at 39.

56 57

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Labour Relations Act by conferring and recognising that those with disabilities were to be protected from discrimination. Despite this legislative framework, recent studies, inquiries and questionnaires addressing both employers and employees in South Africa have shown that the physical environment remains a significant barrier to employing people with disabilities.58 An inquiry in the banking sector reveals that local accommodation efforts have for the most part been inadequate.59 Reportedly, mobility is the primary concern for accommodation, but business organisations only tend to implement minor adjustments, such as changing a workstation or reorganising office equipment.60 These poor results are troubling, given that surveyed businesses do not consider ‘reasonable’ accommodation costs a significant barrier to employing persons with disabilities.61 Poor results in the public sector suggest a more intractable structural problem: the South African public service is the largest employer in the country, 2161 million public servants, of which only 4798, or, 0.36%, are people with disabilities.62

6.5  Accessibility Accommodation is largely dependent on accessibility. Usually, accessibility is considered together with accommodation, based on the idea that both require some environmental adjustment. However, there is a clear temporal distinction between these notions: whilst accommodation refers to environmental modification concerning working activity and the workplace, accessibility is a preliminary and complementary step in that it concerns the possibility of reaching a workplace, for instance, via adequate transport means. In short, accessibility is a general requirement and a necessary condition for accommodation and the alleviation of discrimination in the workplace.63 In addition, accessibility is a key element in job retention as well as in the recruitment process of persons with disabilities. According to the ILO Code of Practice, ‘accessibility’ should be broadly understood as including ‘signage in use, manuals, workplace instructions and electronic information’. Furthermore, the concept requires a case-by-case adjustment with respect to different types of disability, particularly ‘visual impairment’ and ‘intellectual disability’ (s. 7(1)(2)). Nevertheless, despite this guidance the standards remain ambiguous and inchoate. For example, while s. 7(1)(2) positively takes into account ‘intellectual disability’  Pragashnie Govender et al., ‘Employing People with Disabilities in South Africa’ (2011) 41(1) South African Journal of Occupational Therapy 24. 59  Ibid. 60  Ibid. 61  Ibid. 62  Brian Kwazi Majola and Rubby Dhunapth, ‘The Development of Disability-related Employment Policies in the South African Public Service’ (2016) 14 Problems and Perspectives in Management 150. 63  HRCte, Thematic Study (2012) at 4, para. 32. 58

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as a critical distinguishing factor that can orient policy measures, it still does not specify any particular policy or provide guidance as to how intellectual disability must concretely be taken into account to shape accessibility. Accessibility is clearly established in the CRPD Article 9. This is a complex provision, which requires States to take appropriate measures to enable persons with disabilities to live independently and participate in all aspects of life, on an equal basis with others. This extends to all types of infrastructure, from buildings, to roads, transportation and information. Under Article 9, the State also has an obligation to ensure that private entities implement accessibility. This is complemented by an obligation for employers to take steps to improve accessibility for different types of disability, under the ILO Code of Practice (s. 7(1)(1)). According to the HRCte, States such as Andorra and Egypt have taken steps to facilitate transportation to workplaces, whilst Germany and Mexico have passed legislation to the effect that accessibility must be ensured in private- and public-­ sector workplaces over a certain number of employees.64 However, these measures are often insufficient to prevent or exclude discrimination at work against persons with disabilities. For instance, reports on South Africa show that inaccessible parking and means of transport are a significant barrier to employing people with disabilities.65 Negative trends also emerge in States such as the US and Norway: whilst these countries recognise the importance of non-discrimination in employing people with disabilities, statistics reveal that only 21.6% of Americans with disabilities were employed in 2009, compared to 70% of persons without disability, while in Norway the ratio was 43.6% to 74.6% in 2010.66 Interviews with people affected by mobility disabilities in these countries show that a holistic approach to disability is required, establishing a continuum between services and accommodation for work, on the one hand, and prerequisites for participation, that is, accessibility, spanning transportation and personal home assistance, on the other.67

6.6  T  he Obligation to Fulfil the Right to Work of Persons with Disabilities: Interaction between the State and the Private Sector The State has a proactive duty to fulfil the right of people with disabilities to work. ICESCR Article 6(2) provides that the State must take steps to achieve the full realisation of the right to work, including vocational guidance, training programmes, policies and techniques to achieve cultural development and full and productive  Ibid., at 8–9, para. 27.  Majola and Dhunapth, ‘The Development of Disability-related Employment Policies’ (2016). 66  Janikke Solstad Vedeler and Naomi Schreuer, ‘Policy in Action: Stories on the Workplace Accommodation Process’ (2011) 22(2) Journal of Disability Policy Studies 95, at 96. 67  Ibid., at 102. 64 65

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employment, whilst safeguarding individual fundamental political and economic freedoms. Under ICESCR Article 7, just and favourable working conditions include fair wages and ‘equal remuneration for work of equal value without distinction of any kind’, with particular regard to gender; decent living for oneself and the family; safe and healthy working conditions; equal opportunity for promotion; and rest and leisure. ICESCR Article 8 further provides the universal right to constitute trade unions. This is spelled out in detail with respect to persons with disabilities under CRPD Article 27(1)(g), according to which the State is obliged to ‘[e]mploy persons with disabilities in the public sector.’ In addition, under CRPD Article 27(1) (h), the State has a duty to ‘promote the employment of persons with disabilities in the private sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures.’ These provisions must be contextualised within the concept of ‘inclusive sustainability’ which reaffirms the centrality of employing people with disabilities for a viable green economy.68 States often resort to quotas or monetary and tax incentives (for instance, deductions and credits) as a means for private employers to recruit people with disabilities. However, despite the adoption of incentives, people with disabilities are still underrepresented in both the public and private sector in many countries,.69 Several States have implemented their obligations via the establishment of quotas for persons with disabilities in the public and (sometimes) private sectors.70 Strict quotas consider persons with a disability preferentially, regardless of their level of qualification as compared to other candidates. Flexible quotas prioritise a person with a disability only in the case of equal qualification with other candidates. In contrast, binding quotas are sanctioned such that if employers do not meet the quota requirements, a levy applies. The monies collected via quota schemes are normally conveyed to a fund administered by public authorities that supports access to labour for people with disabilities. For instance, in 1974 Germany started to implement a quota-levy scheme. Changes made to the Sozialgesetzbuch (‘Social Code’) in 2002 established that public and private employers with a workforce of at least 20 employees must ensure that at least 5% of their workforce is comprised of persons with disabilities. Levies for breaching the quota are used to facilitate the rehabilitation and employment of the disabled, for instance, by supporting employers to pay extra costs associated with the employment of a disabled person. Japan has implemented employment quotas that vary according to the level of employment and unemployment in the labour market. Employers with a workforce of at least 200 employees have a legally mandated quota for people with disabilities of 1.8% of the total workforce.71

 OHCHR, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc A/HRC/44/30 (2020) at para. 62. 69  Section 3. 70  HRCte, Thematic Study (2012) at 10, para. 36. 71  O’Reilly, The Right (2007) at 44–45. 68

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Sometimes, quota-schemes for people with disabilities are only recommended, so that compliance is voluntary and not followed by a sanction. This system was established in the Netherlands in the 1980s, when legislation asked employers to facilitate the recruitment of persons with disabilities, with a target between 3 and 5% over three years. However, governmental monitoring at the end of the assessment period showed low progress in the employment of persons with disabilities. A successful story of interaction between public and private action is that of Carrefour in Brazil. In 1991, Brazilian legislation established a quota-scheme for employing people with disabilities in light of the business size, which resulted in a 5% quota for Carrefour. Despite the fact that Carrefour had already several disabled people in its working force, the legislation prompted Carrefour to increase its quota in all its stores throughout the country. Along these lines, Carrefour has developed specific inclusive programmes, particularly the scheme ‘Eu pratico a inclusão’,72 which in 2013 led to the recruitment of twice as many disabled persons as compared to 2012. Another way for the State to address the underemployment of persons with disabilities is by fostering self-employment: a viable option to address differences and avoid indirect discrimination.73 Recent research suggests that people with disabilities are 40% more times likely to be self-employed than other persons.74 However, this option requires overcoming various obstacles. Supporting financially persons with disabilities in starting and running their own business is important to ensure the viability of self-employment, but it is not sufficient. States must ensure that relevant information, for instance, how to establish a successful business strategy, is available to persons with different types of disability.75 For example, in order to start a business, a person must interact with the State to understand the registration and running of a business, and this might prove complicated for a person with a mobility disability. Several States have undertaken significant initiatives to this end; for instance, the EU has decided to make public services more accessible via online technology with the Digital Agenda for Europe.76 The level of organisation required for self-employment may in some cases create an insurmountable obstacle for people with an intellectual disability, however. An effective approach to the issues is evident in the policies initiated by Ukraine. Ukraine is a country with around 2.7 million people with disabilities that has implemented effective policies to facilitate their employment. Until 2002, most people with disabilities lacked adequate vocational training and were therefore unemployed. This prompted the State to open and finance the Ukrainian Vocational

 ‘I practise inclusion’.  Daryoush Vaziri et al., Disabled Entrepreneurship and Self-employment: The Role of Technology and Policy Building, Background Paper for the OECD Project on Inclusive Entrepreneurship (2014). 74  ProBono Australia, People with Disability Turn to Entrepreneurship 2020. 75  Vaziri et al., Disabled Entrepreneurship (2014) at 5. 76  European Commission, Digital Agenda for Europe: Rebooting Europe’s Economy (2014). 72 73

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Training Centre for People with Disabilities in Lutizh, about 40 kilometres from Kiev. The Centre can accommodate 150 disabled persons. It hosts courses delivered by different organisations, such as NGOs and regional governmental departments, which last from 2 to 6 months and address 12 occupations, spanning secretarial services and IT. The ILO contributed to establishing the Centre by equipping two IT classrooms and providing facilities for transport. The ILO also financed feasibility studies, particularly via the formation of promoters of the Centre project in Linz (Austria), which also hosts a well-established re-education centre. The Centre includes around 200 workers among teachers, therapists, caretakers and cooks. The priority is helping people with disabilities to find an occupation. Trainees are selected by regional administrative departments and are mostly below the age of 40. However, the disabled must do their part to find a job, to which end the Centre has established a network to support further training for those who want to upgrade more. The Centre provides a model for other less advanced institutions in Ukraine and trains specialists from other regional centres, spreading expertise. In order to facilitate the integration of persons with disabilities in the open labour market, the Centre operates in conjunction with government job placement services and employers. Statistics show that 60 to 65% of the trainees find employment, significantly raising the figures of gainfully employed disabled persons.77

6.7  Conclusion Following the framework outlined by the ILO from the 1950s onwards, the CRPD provides that the State must take a proactive approach and fulfil the right to work of people with disabilities (more properly, different abilities): this entails interaction between the public and private sector. States have acted within this context by establishing quotas in favour of the disabled and other initiatives, such as the Lutizh Centre in Ukraine. However, the adoption of the CRPD has not yet realised the full implementation of labour rights for people with disabilities. Although figures vary from country to country, statistics in both developed and developing countries show that the percentage of employed persons with disabilities is lower than that of other groups in society. People with disabilities often remain stuck in sheltered or supported employment. The situation is worse for additionally vulnerable groups: women are particularly disadvantaged. Sufficiently distinctive action has not yet emerged with respect to people with intellectual disabilities. In order to improve the number of disabled persons in employment and their condition at work, it is necessary that the State intervene holistically and more incisively to improve: (1) access to labour; (2) reasonable accommodation; and (3) workplace accessibility. Inclusive sustainability raises both a challenge and an opportunity to develop these different but complementary actions. It remains to be

77

 ILO, Trade Unions and Workers with Disabilities (2004) at 38.

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seen, however, how rhetoric is translated into action, as labour rights are second-­ generation fundamental claims. Whilst States have an obligation to eliminate discrimination immediately, they only have a duty to implement labour rights progressively and to the maximum of their capacity.

References78 Documents United Nations General Assembly. 1948. Universal Declaration of Human Rights. Resolution 271(III)A. International Covenant on Civil and Political Rights, opened for signature 16 December 1966, 999 UNTS 171 and 1057 UNTS 407, entered into force 23 March 1976. ILO. 1998. Declaration on Fundamental Principles and Rights at Work, Adopted by the International Labour Conference at Its Eighty-sixth Session, Geneva. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. HRCte. 2012. Thematic Study on the Work and Employment of Persons with Disabilities, UN Doc. A/HRC/22/25. ILO Vocational Rehabilitation (Disabled) Recommendation (No 99), adopted 22 June 1955. ILO Discrimination (Employment and Occupation) Convention (No. 111), opened for signature 25 Jun 1958, entered into force 15 June 1960. Discrimination (Employment and Occupation) Recommendation, 1958 (No. 111), adopted 25 June 1958. Resolution on Vocational Rehabilitation of Disabled Persons, adopted 23 June 1965. Invalidity, Old-Age and Survivors’ Benefits Convention, (No. 128), opened for signature 29 June 1967, entered into force 1 November 1969. Vocational Rehabilitation and Employment (Disabled Persons) Convention No. 159, opened for signature 20 Jun 1983, entered into force 20 Jun 1985. Vocational Rehabilitation and Employment (Disabled Persons) Recommendation (No. 168), adopted 20 June 1983. CESCR. 1994. General Comment No. 5 on Persons with Disabilities. UN General Assembly. 1993. Standard Rules on the Equalization of Opportunities for Persons with Disabilities, A/RES/48/96. ILO. 2007. Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) 20 June 1985. AU NDS. 2011. The Economic Benefits of Disability Employment, Estimates of the Labour Supply Impacts of the OECD Integration Scenario and the National Disability Insurance Scheme Using SDAC 2009. Australian Institute of Health and Welfare. (2020). People with Disability in Australia, Web Report, https://www.aihw.gov.au/reports/disability/people-­w ith-­d isability-­i n-­a ustralia/contents/ employment/unemployment. Committee of Experts on the Application of Conventions and Recommendations, Vocational Rehabilitation and Employment of Disabled Persons. 1998. General Survey on the Reports on the Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) and Recommendation (No. 168).

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European Commission. 2014. Digital Agenda for Europe: Rebooting Europe’s Economy. European Disability Forum. 2011. Second Manifesto on the Rights of Women and Girls with Disabilities in the European Union: A Toolkit for Activists and Policymakers. Fourth World Conference on Women. 1995. Beijing Declaration and Platform for Action. ILO and Irish Aid. 2010. People with Intellectual Disabilities – Opening Pathways to Training and Employment in the African Region. ILO Convention No. 159 on Vocational Rehabilitation and Employment (Disabled Persons), opened for signature 20 June 1983, ILO 195, entered into force 20 June 1985. ILO. 2002. Code of Practice on Managing Disability in the Workplace Adopted. ILO. 2002. Managing Disability in the Workplace. ILO. 2004. Trade Unions and Workers with Disabilities. ILO. 2004. Trade Unions and Workers with Disabilities: Promoting Decent Work, Combating Discrimination Labour Education, No. 137. ILO. 2010. People with Intellectual Disabilities: Achieving Full Participation in Training and Employment, Lusaka Declaration. ILO. 2014. Achieving Equal Employment Opportunities for People with Disabilities through Legislation. ILO. 2014. Business as Unusual: Making Workplaces Inclusive of People with Disabilities. OHCHR. 2020. Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc A/HRC/44/30. ProBono Australia. 2020. People with Disability Turn to Entrepreneurship. UN GA. 1971. Declaration on the Rights of Mentally Retarded Persons. Resolution 2856 (XXVI). World Conference of the UN Decade for Women. 1980. Quality, Development and Peace, Report, A/CONF.94/35. World Conference of the UN Decade for Women. 1985. Report to Review and Appraise the Achievements of the UN Decade for Women, Equality, Development and Peace.

Bibliography Bantekas, I., Pennilas, F., & Trömelat, S. (2018a). Article 27: Work and employment. In I. Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (Vol. 764). Oxford University Press. Bantekas, I., Stein, M. A., & Anastasiou, D. (Eds.). (2018b). The UN Convention on the Rights of Persons with Disabilities: A commentary. Oxford University Press. David, N. (2004). Women with disabilities  – Dual discrimination. In Trade unions and workers with disabilities: Promoting decent work, combating discrimination. Labour Education, No. 137. De Beco, G. (2021). Disability in international human rights law. Oxford University Press. Govender, P., et  al. (2011). Employing people with disabilities in South Africa. South African Journal of Occupational Therapy, 41(1), 24. Majola, B. K., & Dhunapth, R. (2016). The development of disability-related employment policies in the south African public service. Problems and Perspectives in Management, 14, 150. Meltzer, A., Bates, S., Robinson, S., Kayess, R., Fisher, K. R., & Katz, I. 2016. What do people with intellectual disability think about their jobs and the support they receive at work?. A Comparative Study of Three Employment Support Models. Naami, A. (2014). Breaking the barrier: Ghanaians perceptions about the social model. Disability, CBR and Inclusive Development, 25(1), 21. Naami, A. (2015). Disability, gender, and employment relationships in Africa: The case of Ghana. African Journal of Disability., 4(1), 95. O’Reilly, A. (2007). The right to decent work of persons with disabilities.

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Ozawa, M. N., & Yeo, Y. H. (2006). Work status and work performance of people with disabilities. Journal of Disability Policy Studies, 17(3), 180. Padkapayeva, K., Posen, A., Yazdani, A., Buettgen, A., Mahood, A., & Tompa, E. (2017a). Workplace accommodations for persons with physical disabilities: Evidence synthesis of the peer-reviewed literature. Disability and Rehabilitation, 39(21), 2134. Padkapayeva, K., Posen, A., Yazdani, A., Buettgen, A., Mahood, Q., & Tompa, E. (2017b). Workplace accommodations for persons with physical disabilities: Evidence synthesis of the peer-reviewed literature. Disability and Rehabilitation, 39(21), 2134. Smith, D. L. (2007). Employment status of women with disabilities from the behavioral risk factor surveillance survey (1995–2002). Work, 29(2), 127. VazirI, D., et al. (2014). Disabled entrepreneurship and self-employment: The role of technology and policy building. Background paper for the OECD Project on Inclusive Entrepreneurship. Vedeler, J. S., & Schreuer, N. (2011). Policy in action: Stories on the workplace accommodation process. Journal of Disability Policy Studies, 22(2), 95.

Chapter 7

Towards a Decentralised Model of Participation for People with Disabilities? The Case of Human Rights Cities Camilla Ioli

On the exterior convex wall is first an immense drawing of the whole Earth, given at one view Tommaso Campanella, The City of Sun

Contents 7.1  I ntroduction 7.2  T  he Concept of Disability and the Right to Participation 7.2.1  Disability and Right to Participation in General International Law 7.2.2  The Right to Participation in the EU Legal Framework 7.2.3  Regulatory Loopholes 7.3  Global Urban Justice 7.3.1  ‘Human Rights Cities’ 7.3.2  Italy and the Test Case of Bologna as a ‘Human Rights City’ 7.4  Conclusion References

                             

154 155 155 158 160 162 162 165 169 170

Abstract  Effective involvement of people with disabilities (different abilities) in policy choices affecting them is still not adequately implemented. A survey of the social approach to disability underpinning the Convention on the Rights of Persons with Disabilities and the EU Disability Strategies displays a lack of effectiveness, which is partially due to the lack of a univocal definition of the right to participation. Arguably, the ‘global urban justice’ conceptualisation provides a way forward, underscoring the importance of implementing human rights at the local level. Owing to their proximity to people’s needs, local institutions are better equipped to ­effectively implement the rights of persons with disabilities. Bologna is indeed a C. Ioli (*) European Focal Point, MCGY Migration Working Group (MYCP), Bologna, Italy © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_7

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prominent example of a ‘human rights city’, where public and private local initiatives combine to effectively implement the right to participation. Keywords  People with disabilities (different abilities) · Right to participation · Global urban justice · Human rights cities

7.1  Introduction For a long time, disability has been considered a matter of social security, welfare, health and charity, rather than being conceptualised as a human rights issue. Such a conceptualisation resulted in the ‘individual’ or ‘medical’ model of disability. The ‘medical model’ of disability sees the physical, mental or sensory impairment of a person as a limit to participation in society and living a ‘normal life’. Disability is then an individual problem that must be somehow cured or addressed to improve life in a world not tailored for disabled people. Within this model, people with disabilities are relegated to service-users, whose agency is forgotten and who are easily subjected to segregation in different fields of life, such as employment and education.1 Disabled people themselves pushed for a change of perspective and the development of the ‘social model of disability’. They described disability as a societal construct imposed on already existing impairment and resulting in isolation from society.2 Disability is indeed also the consequence of societal barriers preventing a person from effectively engaging with the rest of society. The fact that a person in a wheelchair cannot access a building is not because of physical impairment, but is the result of the building’s flaws, not having the necessary equipment to ensure the entrance of a person with a physical impairment: ‘[i]naccessibility problems do not so much result from mobility, visual, or hearing impairments but rather are a corollary of a political decision to build steps but not ramps, to provide information in printed letter version only or to exclude.’3 The shift from the medical approach to the social model of disability brought important changes in the law and disability policies, moving from welfare or societal security law to anti-discrimination or equality law. The link between the social model of disability and the right to participation for persons with disabilities can be addressed in multifaceted ways and from the most 1  The problem of segregation for disabled people before the adoption of the social model approach is further explored by Bradley Areheart, ‘When Disability Isn’t Just Right: The Entrenchment of the Medical Model of Disability and the Goldilocks Dilemma’ (2008) 83 Indiana Law Journal 181. 2  UPIAS, Fundamental Principles of Disability (UPIAS/Disability Alliance, 1976). 3  Lisa Vanhala, ‘The Complexity in Achieving Disability Equality’ (2015) 37(4) Human Rights Quarterly 831, at 840.See also Theresia Degener, ‘Disability as a Subject of International Human Rights Law and Comparative Discrimination Law’, in Stanley S. Herr et al. (eds.), The Human Rights of Persons with Intellectual Disabilities: Different but Equal (OUP, 2003) 151.

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diverse perspectives. The focus of this chapter is the innovative role of local authorities in the matter. The chapter first discusses the meaning of the concept of participation for people with disabilities, rectius, different abilities, and then proposes an innovative analysis from the perspective of ‘human rights cities’. The first part of the chapter concisely analyses participation under international and European Union (‘EU’) legal instruments and policies, namely the United Nations Convention on the Rights of Persons with Disabilities (‘UN CRPD’)4 and the EU Disability Strategies. The second part of the analysis draws from the theoretical framework of global justice to explore the innovative role of local authorities in the implementation of human rights: Bologna, a city in the North of Italy, is taken as a case study to discuss the meaning of an effective right to participation for people with disabilities.

7.2  The Concept of Disability and the Right to Participation 7.2.1  D  isability and Right to Participation in General International Law Disabled people are a recognisable group in society, which is ‘cross-cutting’ with respect to other vulnerable groups, such as refugees, women and children. Moreover, disabled people are not a homogenous group, neither in terms of needs nor in terms of impairments. A deaf person has a different life from a person with a severe mental health disorder or from a person forced to be in a wheelchair after an unexpected accident. Giving an account of disability in society from a legal perspective compels charting largely uncharted waters.5 Even though a deep analysis of international law instruments governing disability is beyond the scope of the chapter, it is important to briefly outline the development of the main currents of thoughts to contextualise the issue of participation. The first definition of disability was given in the United Nations Declaration of the Rights of Disabled Persons adopted in 1975.6 In the Declaration, ‘disabled person’ refers to ‘any person unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and/or social life, as a result of deficiency, either congenital or not, in his or her physical or mental capabilities.’7 This represents an example of a document framing disability following the medical model: the disabled is unable to have a ‘normal life’ due to a deficiency in physical or mental capabilities. The 1981 United Nations (‘UN’) International Year of Disabled Persons and the subsequent World Programme of Action stressed the importance of  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008.  See Chap. 1 on sovereign entities and disability rights by Quirico in this volume. 6  UN GA, Declaration on the Rights of Disabled Persons, Res. 3447(XXX), 9 December 1975. 7  Ibid. 4 5

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recognising the rights of persons with disabilities.8 It was the first time in which the social model of disability was embedded in a policy document9 and the recognition of inclusiveness was complemented by the acknowledgment of the need to guarantee to disabled people the same opportunities granted to any other persons, together with the improvement of their living conditions.10 This process led in 2006 to the adoption of the CRDP, together with the Optional Protocol to the Convention on the Rights of Persons with Disabilities (‘CRPD Optional Protocol’),11 establishing a Committee designed to value its implementation and development. The CRDP refers to persons with disabilities as ‘those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’12 Interestingly, the CRDP does not include a list of disabilities, thus making disability an ‘ever-evolving concept’.13 The definition under the CRPD and the way in which that Convention was negotiated are two relevant aspects to discuss in the context of the right to participation. First, following the definition, the CRDP aims to deconstruct the barriers preventing people from effectively and fully participating in society within the framework of the social model of disability. Secondly, the CRDP is the first international convention actively including the views of its addressees: people with disabilities and their representatives contributed to both the drafting and the negotiation of the text of the CRDP under the slogan: ‘[n]othing about us without us’.14 Scholars underscore that the choice of this specific slogan by the disability movement during the negotiation of the CRDP was aimed to underline the need for active involvement in decision-­ making processes affecting disabled persons.15 Indeed, even though the effective participation of people with disabilities in society is clearly a structural element of the Convention, that right to participation has different shades. The ‘effective participation of people with disabilities in society’ is a key structural feature of the CRPD, to the extent that it constitutes a fundamental tenet to guarantee the overarching principle of non-discrimination for reasons of disability.

8  UN GA, International Year of Disabled Persons, Res. 31/12, 16 December 1976; Id., World Programme of Action concerning Disabled Persons, Res. 37/52 of 3 December 1982. 9  UN GA, Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Res. 48/96, 20 December 1993. 10  Ibid., at para. 15 11  Opened for signature 13 December 20016, 2518 UNTS 283, 3 May 2008. 12  Emphasis added. 13  OCSE, Guidelines on Promoting the Political Participation of Persons with Disabilities (2019). 14  For a more in-depth analysis of the disability movement, see Diane Driedger, The Last Civil Rights Movement: Disabled People’s International (St. Martin’s Press, 1989); James Charlton, Nothing about Us without Us: Disability Oppression and Empowerment (University of California Press, 1998). 15  Gauthier De Beco and Alexander Hoefmans, ‘National Structures for the Implementation and Monitoring of the UN Convention on the Rights of Persons with Disabilities’, in Gauthier De Beco (ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities (Brill, 2013) 9.

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Such participation is necessarily grounded in civil society organisations made of, or representing the interests of, people with disabilities. The right to participation is fundamental to the enjoyment of disabled peoples’ rights, which are human rights and need to be recognised and protected as such. It is a multifaceted concept that includes several aspects of life, such as the right to participate in public and political life or the right to cultural life, leisure and sport. The Preamble to the CRPD establishes a twofold approach to guarantee the active involvement of disabled people in policies and programmes, especially those specifically concerning the disabled, whereby participation is based on autonomy and independence.16 Within this context, a set of rules spell out the details of the right to participation. CRPD Article 4(3) specifically explores the need for States to actively consult people with disabilities when implementing disability policies. CRPD Article 29 elaborates on the right to effective and non-discriminatory participation in public and political life. According to this provision, participation in public life goes beyond physical access to voting procedures; it extends to the right to represent citizens, and thus to be elected, as people with disabilities must have access to public functions at every level of government.17 CRPD Article 30 focuses on the right to cultural life, recreation, leisure and sport. Based on the overarching principle of non-discrimination between people with disabilities and other citizens, persons with disabilities need to be put in the condition to enjoy free time in whatever way they intend to use it. The second paragraph of the provision stresses the right to develop and cultivate creative potential in any form, not only for personal pleasure but also to enrich the society to which people with disabilities belong. Interestingly, under the CRPD people with disabilities are seen not only as persons whose access to physical and non-physical places needs to be guaranteed, but also as actors whose thoughts and actions can positively contribute to society: their agency is then recognised and supported without needing to be channelled. As recognised by several UN resolutions, civil society organisations are key to the implementation of the right to participation for people with disabilities. Even before the adoption of the CRDP, Article 18 of the 1993 UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (‘Standard Rules’) underscored the importance of the creation of organisations representing the rights of persons with disabilities. One such organisation is the International Disability Alliance (‘IDA’), a network of 14 sub-organisations worldwide.18 According to the UN General Assembly, an ongoing exchange and dialogue within the IDA is crucial to promoting ‘the achievement of the millennium Development Goals for people

 Preamble of the Convention, letter ‘o’.  See Ilze Grobelaar Du Plessis and Jehoshaphat Njau, ‘Article 29: Participation in Political and Public Life’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 834; Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 146. 18  International Disability Alliance, https://www.internationaldisabilityalliance.org. 16 17

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with disabilities’.19 Indeed, organisations of peoples with disabilities are ‘both agents and beneficiaries of development in all policymaking and implementation processes for the Millennium Development Goals.’20 According to CRPD Articles 32 and 33, representative organisations are actually fundamental in the context of the implementation of the rights of persons with disabilities., Article 33(1) specifically requires States to partner with stakeholders such as international and regional organisations as well as civil society organisations. Under these provisions, national implementation and monitoring is also based on ‘coordination mechanisms within government to facilitate related action in different sectors and at different levels’, drawing on the involvement of those civil society organisations representing people with disabilities. Accordingly, the implementation of the CRDP requires an ongoing collaboration among different stakeholders working at different levels: even if a reference to the local level is not expressly made, there is a recurrent reference in the CRPD to regional administration and civil society organisations. Representative organisations can work at different levels and within different contexts but, as we will see,21 they can also represent people with disabilities in a specific area and locally, including within the EU legal framework.

7.2.2  The Right to Participation in the EU Legal Framework As recognised by several scholars, there has been a striking improvement for the participation of people with disabilities in society within the EU over the past twenty years.22 In 1997, Article 13 of the Treaty of Amsterdam listed exclusion of disabled people among other causes of discrimination such as religion or sexual orientation.23 As a consequence, the Council of the EU passed the Equal Treatment Framework Directive, through which the principles embedded in Article 13 of the Treaty of Amsterdam have to be implemented in all Member States.24 In 2003, the then-Commission of the European Communities addressed the need to ensure substantial equality for people with disabilities, considering environmental barriers the

 UN GA, Keeping the promise: realizing the Millennium Development Goals for Persons with Disabilities Towards 2015 and Beyond, Report of the Secretary-General, 26 July 2010, at para. 71. 20  Ibid., at para. 111. 21  Section 3. 22  Deborah Mabbett, ‘The Development of Rights-Based Social Policy in the European Union: The Example of Disability Rights’ (2005) 43(1) Journal of Common Market Studies 97. 23  Treaty of Amsterdam Amending the Treaty on European Union, the Treaties Establishing the European Communities and Certain Related Acts, opened for signature 2 October 1997, entered into force 1 May 1999, Article 13: 19

Without prejudice to the other provisions of this Treaty and within the limits of the powers conferred by it upon the Community, the Council, acting unanimously on a proposal from the Commission and after consulting the European Parliament, may take appropriate action to combat discrimination based on sex, racial or ethnic origin, religion or belief, disability, age or sexual orientation. 24  EU Council Directive 2000/78/EC, 27 November 2000.

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main obstacle for full participation in society.25 This approach highlights the acknowledgement and the formal incorporation of the social disability model in EU policy documents, whereby disability is framed as the consequence of the existence of obstacles that affect the way in which people with disabilities relate to the world. At that time, no EU Member State had enforced measures challenging discrimination based on disability and only Sweden and Germany considered people with disabilities in their constitutions.26 In 2010, the EU signed and ratified the CRDP as its first human rights treaty. Currently, references to the importance of participation in society for disabled people can be found in the main sources of EU law. Indeed, Article 10 of the Treaty on the Functioning of the European Union (‘TFEU’) requires the EU to combat discrimination based on disability when defining and implementing its policies and activities. The right to live in the community is embedded in TFEU Article 19, where it is framed as the right to full inclusion and full participation. Such inclusion is channelled through access to any kind of housing facilities and community services tailored on a person’s needs. Moreover, Article 26 of the Charter of Fundamental Rights of the EU states that the Union ‘recognises and respects the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community.’27 Nowadays, over 30 European States have implemented legislation addressing disability rights.28 Based on the fundamental sources of EU law, the right to participation is spelled out in detail in the Strategies of the Union on disability. Following the 2003–2010 Disability Strategy,29 full participation of persons with disabilities in the community became a priority of the 2010–2020 Disability Strategy. The overall aim was to empower people with disabilities so that they could enjoy full rights as any other European citizen. Interestingly for the purpose of this paper, the 2010–2020 Disability Strategy drew a line between accessibility and participation in society. Accessibility, framed as access to goods, services and assistive devices, was considered a necessary condition, but not a sufficient one, to achieve participation in society. Economic and social participation in society goes beyond physical and virtual access and ‘is essential to create a sustainable, smart and inclusive growth.’30 Participation in society on an equal basis with others requires the enjoyment of  Commission of the European Communities, The Role of Government for Europe’s Future, Communication from the Commission to the Council, the European Parliament, the European Economic and Social Committee and the Committee of the Regions, COM(2003) 567 final, 26 September 2003. 26  Vanhala, ‘The Complexity’ (2015) at 832. 27  Adopted 2 October 2000. 28  See further Chap. 9 by Anne McNaughton in this volume. 29  European Commission, Communication to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, Equal Opportunities for People with Disabilities: A European Action Plan, COM(2003) 650 final, 30 October 2003. 30  European Commission, Communication to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, EU Disability strategy 2010–2020: A Renewed Commitment to a Barrier-Free Europe, COM(2010) 636 final, 15 November 2010. 25

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rights such as the possibility of free movement and choice of how and where to live. The recognition of these rights makes a disabled person capable of choosing how and to what extent they intend to relate to the community they have chosen. For this reason, the 2010–2020 Disability Strategy focused on three pillars with regard to participation. The first pillar was a prerequisite to all the others and concerned the necessity of overcoming the obstacles to the exercise of the rights of people with disabilities ‘as individuals, consumers, students, economic and political actors’.31 The second pillar fostered the strengthening of community-based services, with a view to leaving residential institutions for people with disabilities behind and negotiating a stronger presence in the community in physical terms.32 The third pillar focused on ensuring that disabled people could take advantage of their free time as any other EU citizen. The aim of this was to guarantee accessibility to recreational events and organisations as well as participation in sport, including the creation of ‘disability-specific sports’. The EU Disability Strategy 2021–2030 builds on these pillars,33 ‘fostering participation in the democratic process’34 and paying attention to the way in which the COVID-19 pandemic has affected the lives of people with disabilities, broadening discrimination. The new Strategy is crucial to implementing the European pillar of social rights, advances the CRPD at both the EU and Member State level and envisages thorough participation in society for people with disabilities on a non-discriminatory basis, spanning access to justice, healthcare, education and culture.35 Interestingly, the Strategy affirms that in its implementation it will be essential for the European Commission to create a dialogue on disability with existing networks of local and regional authorities.36

7.2.3  Regulatory Loopholes Effective participation of people with disabilities in policy choices affecting them is essential for two main reasons. First, social justice dictates that whoever is to be subjected to a certain treatment or policy should have the right to play a leading role  Ibid., at 5.  This approach was explored by New Zealand in 2003 via the Community Participation Project, when people who had lived in residential houses for years were reintroduced in the community where they used to live before. The implementation of this model has been contested by New Zealand scholars, who claim that its adoption focused on creating physical places within the community, whereas the positive impact for people brought back in the community would lie in the actual interaction with people living there. Indeed, spatial presence is not the primary indicator for evaluating inclusion (Paul Milner and Anne Bray, Community Participation: People with Disabilities Finding Their Place, Report on the CCS Community Participation Project (2004)). 33  European Commission, Union of Equality, Strategy for the Rights of Persons with Disabilities 2021–2030 (2021) https://ec.europa.eu/commission/presscorner/detail/en/ip_21_810. 34  Ibid., at 8–9, para. 3.2. 35  Ibid., at 16 ff. 36  Ibid., at 27. 31 32

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in its definition.37 Second, participation and control of services by citizens is an important tool of participatory democracy. Representation of service-users is key also in terms of citizenship’s values because it recognises users as social actors.38 In light of the overall preference for the social model over a medical model of disability, international and regional regulation shows that the right to participation is a concept stretching from the preference for community-based services over residential options to the possibility for disabled people to take advantage of their free time. The focus remains on physical places in terms of removing barriers or opting for houses in the community, rather than residential houses outside of it. However, a definition is still missing. As Wilson would say, ‘access and participation have become synonyms of inclusion’ and policy outcomes are considered only in terms of services provided:39 such a narrow approach leaves the subjective experience of the person and their life outcomes aside. Furthermore, there is a general reference to governance under Article 33 of the CRDP and the necessary involvement of disabled people and/or their representatives, but the focus is on coordination ‘between the Commission services and the EU institutions, and between the EU and the Member States’, not on the actual involvement of people with disabilities. The 2017 Report on the implementation of the 2010–2020 European Disability Strategy does not track significant steps for the involvement of disabled people in decision-making. The Report incorporates inputs deriving from a public consultation launched by the European Commission to evaluate the implementation of the EU Disability Strategy, including people with disabilities.40 The consultation was public and open to both individuals and organisations, with 41.96% of the organisations consulted, in a sample of 286, working at the regional or local level.41 Replies could be submitted between 22 December 2015 and 18 March 2016 and the questionnaire was accessible in all 23 languages of the EU in both an online and printed version. The promoting video included sign language interpretation. A total of 1518 contributions were presented.42 In light of the findings of the consultation, the area of participation based on the three-pillared structure of the EU Disability Strategy has not benefited from strong improvement. Only 34.36% of the consulted  This was also the assumption behind the ‘Nothing without Us’ movement during the negotiation of the CRDP: Germana Agnetti, ‘Arrivano i consumatori: dove andiamo?’ (2007).Psichiatria di Comunità, 6, at 73–79; Charlton, ‘Nothing About Us without Us’ (1998). 38  Angelo Barbato, ‘La partecipazione degli utenti ai processi decisionali in salute mentale: una sfida e un’opportunità’ (2017) Sestante 3. 39  Erin Wilson, ‘Defining and Measuring the Outcomes of Inclusive Community for People With Disability, Their Families and the Communities with Whom They Engage’, in Christine Bigby, Chris Fyffe and Jim Mansell (eds.), From Ideology to Reality: Current Issues in Implementation of Intellectual Disability Policy. Proceedings of the Roundtable on Intellectual Disability Policy (2006) 24. 40  European Commission, Progress Report on the Implementation of the European Disability Strategy (2010–2020), 2 February 2017, at 4. 41  European Commission, Commission Staff Working Progress Report on the implementation of the European Disability Strategy (2010–2020), SWD(2017) 29 final, 2 February 2017, at 32. 42  Ibid., at 28. 37

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organisations reported a slight improvement in the five years following the adoption of the Disability Strategy, whilst 42.8% of the individuals consulted did not report any improvement. Moreover, among current difficulties for disabled people, almost four per cent of both individuals and organisations consulted claimed to face difficulties in being heard in matters affecting them. Around 2.8% of consulted individuals and organisations stressed the difficulty of participating in public and political life as the main concern. Interestingly, in terms of the involvement of people with disabilities in decision-making processes relevant to them, there was a significant difference between feedback provided by organisations and feedback provided by individuals: only 0.24% of the individuals consulted considered this issue one requiring improvement, as opposed to 2.74% of the surveyed organisations.43 To conclude, 37.2% of the individuals consulted and 38.54% of the submitting organisations disagreed with the statement that people with disabilities can fully participate as any other citizen in everyday societal activities.44

7.3  Global Urban Justice 7.3.1  ‘Human Rights Cities’ The main challenge regarding universal human rights is their implementation and enforcement. A recent development in the literature relates to the role of local authorities in fostering human rights: the rise of so-called ‘human rights cities’ addresses this gap.45 Indeed, local authorities are considered best equipped to implement fundamental rights, especially at a time when human rights efforts are under intense criticism.46 The local level is also where the concept of ‘community’ is shaped. The community needs to be intended as a web made of human relationships, habits and affection to certain people and places.47 The way in which disabled people can effectively exercise the right to participation in the specific meaning of being actively involved in decision-making processes regarding them necessarily goes through the community and the administrative level closer to it: local authorities. Moreover, disability rights are set into the community because family members  Ibid., at 35–39.  Ibid. at 32. 45  Cynthia Soohoo, ‘Human Rights Cities: Challenges and Possibilities’, in Barbara Oomen, Martha Davis and Michele Grigolo (eds.), Global Urban Justice: The Rise of Human Rights Cities (CUP, 2016) 257, at 257–258. 46  Barbara Oomen, ‘Introduction’, in Oomen, Davis and Grigolo (eds.), Global Urban Justice (2016) 1. 47  Pamela Walker, ‘Community Based Is Not Community: The Social Geography of Disability’, in Steven J.  Taylor, Robert Bogdan and Zana Marie Lutfiyya (eds.), The Variety of Community Experience: Qualitative Studies of Family and Community Life (Brookes Publishing Co., 2015) 175. 43 44

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are often the primary care-takers for disabled people,48 and thus the community is the place where innovative programmes can best develop. Local authorities are viewed as capable of creating ‘systemic and proactive solutions’49 and they are described as the ‘natural crossroads for new ideas, uniquely situated to be involved in trans-national discussions about fundamental rights’.50 The reason why they are better equipped is twofold: first, local authorities are the level of government closest to people.51 Therefore, local authorities are able to deliver services that closely reflect the strength of the area and the needs of the local population. Secondly, local authorities often use ‘pragmatism instead of politics’,52 and as a result they can more easily create networks among different actors such as authorities and civil society, whether locally, nationally or even internationally.53 As a consequence of their privileged position among the different levels of government, local authorities can address human rights violations on the ground.54 Indeed, scholars consider cities important actors for the effective implementation of international law in theory and practice.55 There are different reasons and ways in which a city can be framed as a ‘human rights city’: the literature does not seem to offer a single definition.56 Cities adopt a more legalistic approach, expressly referring to human rights treaties in order to challenge national choices. For example, certain cities implement specific human rights conventions that have been ratified at the national level but which have not been implemented locally. Two important examples are cited by Oomen and Baumgärtel, and by Ward. Ward presents a study of the strategic and creative ways in which local mayors in the United States (‘US’) have implemented certain human right treaties, such as the UN Convention on the Elimination of All Forms of Discrimination against Women (‘CEDAW’),57 thus challenging a lack of implementation by the central government.58 Oomen and Baumgärtel present the legal and

 Karen Donelan et al.,‘Challenged to Care: Informal Caregivers in a Changing Health System’ (2002) 21(4) Health Affairs 222. 49  Soohoo, ‘Human Rights Cities’ (2016) at 266. 50  Ibid., at 257. 51  Jonathan Darling, ‘Defying the Demand to “Go Home”: From Human Rights Cities to the Urbanisation of Human Rights’, in Oomen, Davis and Grigolo, Global Urban Justice (2016) 121; Eva García Chueca, ‘Human Rights in the City and the Right to the City, Two Different Paradigms Confronting Globalisation’, ibid., 103, at 119 52  Benjamin R. Barber, If Mayors Ruled the World: Dysfunctional Nations, Rising Cities (Yale UP, 2013) at 4. 53  Oomen, ‘Introduction’ (2016) at 4. 54  Michele Grigolo, ‘Incorporating Cities into the EU Anti-Discrimination Policy: Between Race Discrimination and Migrant Rights’ (2011) 34(10) Ethnic and Racial Studies 1751. 55  Ibid. 56  Oomen, ‘Introduction’ (2016) at 7. 57  Opened for signature 18 December 1979, 1249 UNTS 13, entered into force 3 September 1981. 58  Joann Kamuf Ward, ‘From Principles to Practice: The Role of the US Mayors in Advancing Human Rights’, in Oomen, Davis and Grigolo, Global Urban Justice (2016) 81. 48

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political contention around ‘bed–bad–brood’ (bed–bath–bread) as an example.59 This refers to the choice of certain cities in the Netherlands to ignore national law which denied access to emergency shelter to irregular migrants unless they agreed to be deported. In this case, local authorities challenged national policies through direct reference to human rights treaties and human rights bodies. Indeed, the European Committee of Social Rights (‘ECteSR’) established that the option not to provide emergency shelters to irregular migrants was in breach of Dutch obligations under the European Social Charter (‘ESC’).60 Such a position was supported by three UN Special Rapporteurs on extreme poverty and human rights, who made the government aware of previous rulings by international, regional and national human rights bodies, opining that ‘the exclusion of homeless irregular migrants from emergency assistance violates human rights law’.61 More precisely, the municipality of Utrecht released a report claiming that there were no conditions to send people back to their country of origin and such decisions would have left people in inhumane conditions without a shelter. In other words, people could not go back to their country and would have ended up in the streets ‘in inhumane conditions’.62 Utrecht considered that leaving people in the streets is against international law and the ESC and consequently decided not to respect national law, referring expressly to human rights charters and judgements. Oomen and Baumgärtel also argue that, instead of implementing human rights locally through an express reference to international treaties and principles, it would be more effective to translate them locally because they could be comprehended better by the people involved.63 An example of leaving the legalistic approach behind is the research presented by Darling, who explores the experience of certain cities in the United Kingdom that decided to challenge national governmental policies because they felt that they left asylum seekers destitute.64 A lack of funds and inadequate policies proposed at the national level resulted in action by local authorities to satisfy the needs of asylum seekers in their areas. Such local policies were supported by civil society actors that started the Dignity Not Destitution campaign to challenge national policies.65 Thus, as Darling underlines, ‘both cities and their citizens become aware of the demands that dispersal poses and the exclusions that

59  Barbara Oomen and Maoritz Baumgärtel, ‘Frontier Cities: The Rise of Local Authorities as an Opportunity for International Human Rights Law’ (2018) 29(2) European Journal of International Law 607. 60  European Federation of National Organisations Working with the Homeless (FEANTSA) v The Netherlands, ECteSR, Complaint 86/2012, Decision of 10 November 2014. See also Conference of European Churches (CEC) v The Netherlands, ECteSR, Complaint 90/2013, Decision of 10 November 2014. European Social Charter, opened for signature 18 October 1961, 529 UNTS 89, entered into force 26 February 1965. 61  Oomen and Baumgärtel, ‘Frontier Cities’ (2018) at 617. 62  Municipality of Utrecht cited in Oomen and Baumgärtel, ‘Frontier Cities’ (2018) at 618. 63  Oomen, ‘Introduction’ (2016) 1. 64  Darling, ‘Defying the Demand’ (2016) 121. 65  Ibid.

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asylum produces’.66 Indeed, authorities, citizens and third sector actors, such as local non-governmental organisations (‘NGOs’), started to work together to create a shared campaign. Unlike the cases previously outlined, none of the actors involved made a specific reference to human rights treaties. However, the general human rights principle that ‘we are all human beings ‘constituted a common language for all actors across the board and enabled positive collaborations that pushed other cities to support the campaign.67 Apart from the dichotomy of legalistic or non-legalistic approaches to implementing human rights at the local level, the ways in which cities implement human rights locally varies greatly. Among the ‘human rights cities’, some have used international monitoring mechanisms to make the State accountable for breaching fundamental rights.68 Cities such as Montreal have created their own human rights charters thanks to fruitful collaborations with international networks, as explored by Frate.69 Based on this analysis, a specific conceptualisation of what ‘human rights cities’ are does not seem to emerge in the current literature. Nonetheless, the grassroots level allows local authorities to develop strategies that adapt to the specific features of the local area, thus promoting solutions that work for specific populations, like disabled people. Indeed, disability rights are human rights and cities can have an important role in their implementation. Furthermore, disability rights are a manifold concept for reasons such as the heterogeneity of the represented group70 and the intrinsic nature of discrimination for reasons of disability.71

7.3.2  I taly and the Test Case of Bologna as a ‘Human Rights City’ The Global Urban Justice theoretical framework recognises local authorities, regarded ‘as the lowest tier of public administration within a given State’,72 as playing a key role in the implementation of human rights principles. Within this framework, either initiatives of local authorities have been praised by national governments with their local proposals adopted nationally, or local policies have ended up challenging the national level, creating a complex and ongoing tension among different levels of government. The recognition of the fundamental role of the regional and

 Ibid., at 130.  Ibid. 68  Martha F. Davis, ‘Cities, Human Rights and Accountability: The United States Experience’, in Oomen, Davis and Grigolo, Global Urban Justice (2016) 23. 69  Benoît Frate, ‘Human Rights at a Local Level: The Montreal Experience’, in Oomen, Davis and Grigolo, Global Urban Justice (2016) 64. 70  Vanhala, ‘The Complexity’ (2015) 831. 71  Ibid. 72  Oomen and Baumgärtel, ‘Frontier Cities’ (2018) at 609. 66 67

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local administrative level is underscored by the vertical and horizontal dimension of the principle of subsidiarity embedded in the Costituzione della Repubblica Italiana (‘Italian Constitution’). This fits with disability rights, which have developed historically via a bottom-up approach along the lines of the slogan ‘nothing about us without us’. The first law addressing people with disabilities in Italy goes back to the beginning of the 1970s, with a focus on the physical disabilities of mutilated people. Such regulation has been contested, owing to a typical feature of the Italian model of inclusivity, namely, because it established an advanced set of principles and a sophisticated legal framework contrasting with incompatible operational procedures.73 In 1977 and 1978, two additional Statutes were passed regulating a specific type of physical disability: the first one concerned blind people74 and the second one focused on deaf people.75 More comprehensive legislation addressing disability issues in the Italian legal system was adopted via the framework Statute 104/1992, concerning ‘the assistance, social integration and rights of people with disabilities’. Article 1(b) of this statutory instrument aims to prevent and reduce the disabling conditions affecting the development of a concerned person, the achievement of the maximum level of autonomy and the exercise of civil, political and property rights. Article 3(1), on the other hand, provides a definition of disability, stating that ‘a disabled person is someone who has a physical, psychic or sensorial impairment, stabilised or progressive, which causes difficulties in learning, relationships or work integration and to such an extent that determines a process of social disadvantage or marginalisation.’ The Statute is grounded in the social model of disability and addresses the life of a disabled person in its entirety. Indeed, considering employment and the educational and social integration sphere of the person, the Statute proposes a multidisciplinary approach, involving a broad range of parties of and professional attitudes. The importance of participation of people with disabilities in decision-making processes is mentioned in Article 5(1) of the framework Statutory Law n. 104/1992 and is further detailed in Article 30. Indeed, these provisions require active consultation with concerned people to develop programs for the promotion and protection of people with disabilities at the regional level. These norms embed two relevant principles: first, they expressly recognise the importance of active participation in decision-making processes for people with disabilities. Second, they acknowledge that participation is better coordinated at the regional and local level. On this basis, Articles 39 and 40 regulate the role of municipalities and regions for a better implementation of disability policies. Indeed, local municipalities not only enforce national laws, but they also have a certain level of autonomy in specific matters, based on the constitutional principle of subsidiarity. The vertical dimension of the

 Marisa Pavone, Dall’esclusione all’inclusione. Lo sguardo della Pedagogia Speciale (Mondadori, 2010) at 42. 74  Law 360/1976. 75  Law 517/1977. 73

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principle of subsidiarity under the Italian Constitution generally confers administrative functions upon local municipalities, except if certain powers need to be transferred to the State or to regional authorities in order to guarantee a uniform exercise of governmental functions (Article 118). The horizontal dimension of the principle of subsidiarity focuses on the role of the State, regions and local authorities in recognising the role of citizens to propose activities of general interest.76 The principle of subsidiarity in the Italian Constitution is an important link to the global justice framework, whereby local authorities are considered to be better equipped to deal with human rights issues due to their proximity to local challenges. As the effective participation of people with disabilities takes place via the communities of which they are part, the local level is the place where participation takes shape and develops in a comprehensive and effective manner. Along these lines, pursuant to Article 4 of its governing Statute,77 the Municipality of Bologna expresses a priority commitment to promoting full citizenship and social integration for people with disabilities and their families through the construction of organic relationships with representative associations. For a more concrete implementation of this commitment, in 2014 the Municipality established the Municipal Council of Associations, a body that works to overcome barriers for disabled people, as a means for comparison, evaluation and input, favoring the simplification of disability services. Bologna recognises that the Council has ample autonomy as regards the regulation of its functioning, the choice of topics to be addressed, the organisation of work, as well as the choice of whom to invite to its meetings in order to acquire information, opinions and technical contributions. The Council fosters relations among organisations committed to overcoming barriers for people with disabilities, promoting an active culture of integration to overcome prejudice and expressing opinions on plans and municipal administration projects. Not-for-profit organisations that are part of the Council need to be based in Bologna and are mainly comprised of people with disabilities; their statute must include the social integration of people with disabilities and their families. In sum, Bologna is a model whereby people with disabilities and their representatives foster effective participation in society thanks to a clear commitment of the Municipality outlined in its Statute and via the Municipal Council of Associations, providing a reference for disabled people for free participation without charge. The Municipal Council of Associations illustrates how important the local level is within the broad concept of the ‘right to participation’ of people with disabilities. Unlike governance at a higher level, the active participation of persons with disabilities and their representatives in the design and actual implementation of projects for governance at the local level guarantees the involvement of their views in the long term. The programs Operators Mental Health Family Users Committee (‘CUFO-SM’) and Promote and Actively Achieve Mental Health Together (‘PRISMA’) are two

 Francesca Biondi dal Monte, ‘Il ruolo degli enti locali’, in Mario Savino, La crisi migratoria tra Italia e Unione Europea: diagnosi e prospettive (Editoriale scientifica, 2016) 81. 77  http://www.comune.bologna.it/media/files/statuto_consolidato.pdf. 76

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practical initiatives that illustrate the evolution of the city of Bologna towards personalised planning and social inclusion. The leitmotif of these initiatives is shared or co-managed programming, supported by team and network work via the contribution of the diversity of roles, skills and responsibilities of the stakeholders involved. The Department of Mental Health and Pathological Addictions (‘DSM-DP’) of the Health Unit for the Municipality of Bologna has long been involved in a path for citizen participation towards the promotion and enhancement of the initiatives of the associations of family members and users in collaboration with service teams. In 2009, the CUFO-SM Committee was set up. CUFO-SM is a participatory body for the promotion and enhancement of mental health, protection of rights and support to the initiatives of family members’ associations and users.78 CUFO-SM has therefore become the promoter of a culture of shared participation, amalgamating the knowledge and competences of the various parties and recognising equal dignity.79 The working groups of the organisation have implemented important institutional changes, such as reliance on users and family members as ‘experts’ in light of their possible operational contribution to services for the disabled. CUFO-SM has a twofold aim: the improvement of mental health for people under treatment and their enhancement as ‘resources’ for the community.80 In 2013, CUFO-SM evolved from a sharing of service programming to co-design experimentation via the PRISMA Program.81 Based on the importance of the horizontal and vertical elements of the principle of subsidiarity embedded in Article 18 of the Italian Constitution, the task of PRISMA is promoting, coordinating and supporting the implementation of projects developed by associations representing persons with disabilities and monitoring their progress. The areas in which projects involving representative associations can be framed, enhancing their value and that of users in their potential to perform a social function, are: social integration, promotion and development of the person in his or her various dimensions health, communication, and activities in support of family members. Social integration is understood as the set of cultural processes that make the individual a member of a society. In particular, PRISMA refers to ’supported living’, free time and participation in social life in general, as well as social integration in the workplace. Promotion and development of the person includes, notably, cultural, expressive, artistic, musical and sporting activities. Communication is understood as a cross-cutting area of support to public and private social action inherent to mental health. In 2014, PRISMA carried out nine network projects between different representative associations. In 2015, PRISMA developed 13 projects and the number increased to a total of 16 in 2016. The areas of interest range from housing autonomy to participation in sport, the development of cognitive and expressive skills

 CUFO, https://www.sogniebisogni.it/a-chi-rivolgersi/il-cufo.  Gabriella Gallo et al., ‘Le nuove sfide della partecipazione a Bologna’ (2017) 3 Sestante 40. 80  Ibid. 81  PRISMA, http://www.sogniebisogni.it/index.php/prisma/345-che-cos-e-p-r-i-s-m-a. 78 79

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(also through the so-called ‘alternative therapies’), information and training for family members, support in their caring duties, and educational projects on the relationship between nutrition and mental health. One of the projects led to the creation of the website ‘Dreams and Needs’, aiming to provide information about everything that revolves around the DSM-DP. The name of the site was proposed by the family member of a disabled person who won a competition launched on the local radio. On the basis of this lively and articulated experience, a further development of the PRISMA co-design is being carried out, with a more stable and defined organisation that identifies DSM-DP operators as referents for individual projects and for the different operational units, aiming to establish an increasingly integrated and coordinated network and collaboration system. The CUFO-SM and PRISMA projects, one being the natural evolution of the other, embed the essence of the right to participation. If disabled people are taken into consideration and listened to when it comes to their clinical treatment, or for the implementation of projects they have suggested, it is possible to speak of an effective implementation of participation rights. These projects go beyond the mere concept of accessibility to places as internalised in several national and international policy documents.82 They flow into the existence of a community who is taking care of the person concerned from a medical and social perspective. Thanks to its proximity to a specific territory, the local level is able to understand existing gaps and likely priorities to address, including with which stakeholders it should partner and within which frameworks.

7.4  Conclusion Considered from the specific angle of the effective involvement of people with disabilities (more properly, different abilities) in policy choices affecting them, the right to participation is problematic. A concise analysis of the social approach to disability underpinning the CRDP and the EU Disability Strategies shows a lack of effectiveness in a regulatory context that lacks a univocal definition of the right to participation for disabled people. Indeed, under both the CRDP and the EU Disability Strategies, the right to participation consists of a loose ‘net’ including different meanings of ‘participation’, stretching from the right to vote to the right to leisure activities. Arguably, the ‘global urban justice’ theoretical framework affords a way forward, focusing on the importance of local authorities in the implementation of human rights at the local level. Local authorities are indeed better equipped to effectively implement the rights of persons with disabilities, owing to their proximity to people’s needs. The case study of Bologna as a ‘human rights city’ is a clear example, where public and private local initiatives combine to effectively implement the

82

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right to participation. In the Municipality of Bologna, people with disabilities have direct access to a Council of Associations through which persons with disabilities can express themselves and give feedback on existing local policies. In this context, the CUFO-SM and PRISMA projects guarantee that people with disabilities and their families become active participants in drafting and evaluating different types of projects in the areas of mental health and pathological addiction, spanning social integration, communication and support to family members.

References83 Documents Charter of Fundamental Rights of the European Union, adopted 2 October 2000. Commission of the European Communities. 2003. The Role of Government for Europe’s Future, Communication from the Commission to the Council, the European Parliament, the European Economic and Social Committee and the Committee of the Regions, COM(2003) 567 final. Convention on the Elimination of All Forms of Discrimination against Women, opened for signature 18 December 1979, 1249 UNTS 13, entered into force 3 September 1981. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. EU, 2000. Council Directive 2000/78/EC, Establishing a General Framework for Equal Treatment in Employment and Occupation. European Commission. 2003. Communication to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, Equal Opportunities for People with Disabilities: A European Action Plan, COM(2003) 650 final. European Commission. 2010. Communication to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, EU Disability strategy 2010–2020: A Renewed Commitment to a Barrier-Free Europe, COM(2010) 636 final. European Commission. 2017. Commission Staff Working Progress Report on the implementation of the European Disability Strategy (2010–2020), SWD(2017) 29 final. European Commission. 2017. Progress Report on the Implementation of the European Disability Strategy (2010–2020). European Commission. 2021. Union of Equality, Strategy for the Rights of Persons with Disabilities 2021–2030. European Social Charter, opened for signature 18 October 1961, 529 UNTS 89, entered into force 26 February 1965. Italy. 1976. Law 360. Italy. 1977. Law 517. OCSE. 2019. Guidelines on Promoting the Political Participation of Persons with Disabilities. Optional Protocol to the Convention on the Rights of Persons with Disabilities, opened for signature 13 December 20016, 2518 UNTS 283, 3 May 2008. Treaty of Amsterdam Treaty of Amsterdam amending the Treaty on European Union, the Treaties Establishing the European Communities and Certain Related Acts, opened for signature 2 October 1997, entered into force 1 May 1999. UN GA, 2008. Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Res. 48/96. 83

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UN GA. 1975. Declaration on the Rights of Disabled Persons, Res. 3447(XXX). UN GA. 1976. International Year of Disabled Persons, Res. 31/12. UN GA. 1982. World Programme of Action concerning Disabled Persons, Res. 37/52. UN GA. 2010. Keeping the promise: realizing the Millennium Development Goals for Persons with Disabilities Towards 2015 and Beyond, Report of the Secretary-General. UPIAS. 1976. Fundamental Principles of Disability.

Cases European Federation of National Organisations Working with the Homeless (FEANTSA) v. The Netherlands, ECteSR, Complaint 86/2012, Decision of 10 November 2014. Conference of European Churches (CEC) v. The Netherlands, ECteSR, Complaint 90/2013, Decision of 10 November 2014.

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Part III

Universal and Regional Approaches

Chapter 8

Mapping the UN Disability Rights System: A Two-Tier Pathway to Universalism Ottavio Quirico

Contents 8.1  I ntroduction 8.2  T  he UN Disability Rights Treaty System: lex generalis and lex specialis 8.2.1  Core UN Treaties and Disability: Explicit and Implied Protection 8.2.2  The CRPD and the Committee on the Rights of Persons with Disabilities 8.3  Disability Rights under the UN Charter 8.3.1  Achieving Inclusiveness via the General Assembly and the Human Rights Council 8.3.2  The Global and Regional Action of the Economic and Social Council and the Commission for Social Development 8.3.3  The Eclectic Role of the Secretariat and the Office of the High Commissioner for Human Rights 8.3.4  Security Council: Progressive Developments 8.3.5  UN Specialised Agencies, Partnerships and Other UN Organs 8.4  Conclusion References

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Abstract  Protection of disability (different ability) rights in the United Nations (‘UN’) system is at the core of the disability rights architecture, at the crossroads between treaty law and general international law. Along the lines of the general human rights implementation system, the UN protects and fulfils human rights via a two-track pathway: (1) ‘directly’, via institutions established under the UN Charter; and (2) ‘indirectly’, via a specific treaty regime, which is centred on the UN Convention on the Rights of Persons with Disabilities (‘CRPD’). Institutions grounded in the UN Charter, the CRPD as well as other general and specific UN human rights treaties are not conceived of in isolation, but rather interact, aiming to

O. Quirico (*) Law School, University of New England, Sydney, Australia Centre for European Studies, Australian National University, Canberra, Australia Law Department, European University Institute, Firenze, Italy e-mail: [email protected]; [email protected]; [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_8

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achieve inclusiveness nationally, based on the concepts of independent living, accessibility and participation. This is particularly challenging as concerns intellectual disability and requires that States implement a change of paradigm centred on the concept of deinstitutionalisation. Keywords  UN disability (different ability) rights treaty system · Lex generalis · Lex specialis · UN Charter · Equality · Inclusiveness

8.1  Introduction Substantive disability rights (rectius, different ability rights) and their protection in the United Nations (‘UN’) system are at the core of the disability rights architecture, at the intersection between treaty law and general international law. Paralleling the general human rights protection system, the UN protects and fulfils human rights via a two-track system: (1) ‘directly’, via institutions established under the UN Charter; and (2) ‘indirectly’, via a specific treaty regime, which is centred on the UN Convention on the Rights of Persons with Disabilities (‘CRPD’). Human rights treaties negotiated under the guidance of the UN define the basic international human rights framework, including nine core conventions. The 2006 CRPD is the last link in the chain: it outlines fundamental disability rights and its Optional Protocol establishing the Committee on the Rights of Persons with Disabilities (‘CRPD Optional Protocol’) creates the Committee on the Rights of Persons with Disabilities (‘CteRPD’) as the fundamental implementation mechanism. In addition to the CRPD, specific disability rights are embedded in the UN Convention on the Rights of the Child (‘CRC’).1 Furthermore, the disabled enjoy general protection via all human rights treaties as well as non-human rights UN treaties. Under the UN Charter,2 several organs are involved in the implementation of disability rights, including not only the main bodies, particularly the UN General Assembly, Economic and Social Council (‘ECOSOC’) and Secretariat, but also auxiliary organs, such as the Human Rights Council (‘HRC’) and the Office of the High Commissioner for Human Rights (‘OHCHR’). These institutions often come together to address disability and establish partnerships, such as the Interagency Support Group for the CRPD, which involves several UN agencies, including the World Health Organisation (‘WHO’), International Labour Organisation (‘ILO’) and World Bank. The purpose of this contribution is to ‘map’ the UN disability rights system and highlight its pattern within the broader UN organisational system, from the standpoint of both UN human rights treaties and the UN Charter. The analysis first addresses UN human rights treaties and non-human rights treaties and secondly the

 Opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990.  Opened for signature 26 June 1945, 1 UNTS XVI, entered into force 24 October 1945.

1 2

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UN Charter. This approach aims to facilitate a better understanding of the institutional functioning and activities of the different interlinked UN organs, which revolve around the substance of the CRPD and other human rights conventions.

8.2

The UN Disability Rights Treaty System: lex generalis and lex specialis

Like any other human rights, the UN has taken the initiative to regulate disability rights via a specific Convention, the CRPD, which outlines the fundamental substantive and procedural paradigm for disability right and duties. Furthermore, in light of their ‘cross-cutting’ nature, disability rights are protected under other general or particular human rights treaties, such as the International Covenant on Civil and Political Rights (‘ICCPR’), the UN Convention on the Elimination of Discrimination against Women (‘CEDAW’)3 and the CRC.  Like all core human rights treaties, the conventional development of disability rights has taken place outside the framework of the UN International Law Commission (‘ILC’). Arguably, the CRPD has paved the way to the adoption of a new generation of treaties focusing on vulnerable groups. In fact, the UN Working Group on Ageing is working on a draft UN Convention on the Rights of Older Persons,4 within which the blueprint provided by the CRPD is clearly visible. UN Treaties and Disability 1965 International Convention on the Elimination of All Forms of Racial Discrimination

Human Rights Committee

1966 International Convenant of Civil and Political Rights 1966 International Convenant on Economic, Social and Cultural Rights

Committee on Economic, Social and Cultural Rights

1979 Convention on the Elimination of All Forms of Discrimination against Women

CEDAW Committee

1984 Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment

1990 International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families 2006 International Convention for the Protection of All Persons from Enforced Disappearance

Committee on Migrant Workers

Committee on Enforced Disappearance

2006 Convention on the Rights of Persons with Disabilities Draft Convention on the Rights of Older Persons

Committee against Torture

Committee on the Rights of the Child

1989 Convention on the Rights of the Child

3

Committee on the Elimination of Racial Discrimination

Committee on the Rights of Persons with Disabilities

ILO Vocational Rehabilitation and Employment (Disabled Persons) Convention

Other treaties, eg, UNFCCC

Opened for signature 18 December 1979, 1249 UNTS 13, entered into force 3 September 1981. UN GA, Towards a Comprehensive and Integral International Legal Instrument to Promote and Protect the Rights and Dignity of Older Persons, A/RES/67/139, 13 February 2013. 4

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8.2.1  C  ore UN Treaties and Disability: Explicit and Implied Protection General treaties on human rights (lex generalis) also include protections for disability rights. This is certainly so in the case of the 1966 ICCPR and International Covenant on Economic, Social and Cultural Rights (‘ICESCR’), which respectively include, for example, provisions on the rights to life and health that are relevant to the disabled. For instance, the Committee on Economic, Social and Cultural Rights has underscored the importance of the right of persons with disabilities to physical and mental health under the ICESCR, which implies a right to access medical and social public and private services necessary to reach an optimum level of independence and functioning.5 Otherwise, specific protection for disability rights is covered by specific human rights treaties (lex specialis). However, among the nine core human rights treaties that govern different human rights areas,6 save the CRPD, only the CRC expressly recognises the human rights of persons with disabilities. This is due to a hesitancy to explicitly mention group rights, including disability rights, in human rights conventions, in light of the universal nature of fundamental rights.7 Notably, CRC Article 23 establishes a comprehensive protective regime for the disabled. CRC Article 23(1) compels State Parties to acknowledge that a mentally or physically disabled child should have a life assured of dignity, where self-­reliance is promoted and active participation in the community is facilitated. Under CRC Article 23(2)–(3), State Parties recognise the right of disabled children to special care and commit to encouraging and ensuring their assistance subject to available resources and free of charge where possible. This aims to grant effective access to education, training, health care and rehabilitation services, preparation for employment and recreation opportunities, as well as the fullest possible social integration and individual development. For these purposes, under CRC Article 23(4), State Parties commit to cooperating, exchanging and disseminating information concerning preventive health care, medical, psychological and functional treatment, aiming to allow the State Parties to improve their capabilities, skills and experience, with particular regard to developing countries. In light of CRC Article 23, the Committee on the Rights of the Child has affirmed the duty of the State Parties to develop programmes aiming to facilitate the active participation of children with disabilities in society, notably underscoring a lack of adequate infrastructure and the limited number of qualified staff and institutions.

5  CteESCR, The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), General Comment No. 14, Contained in Document E/C.12/2000/4. 6  The Core International Human Rights Instruments and Their Monitoring Bodies, https://www. ohchr.org/EN/ProfessionalInterest/Pages/CoreInstruments.aspx. 7  Arlene S.  Kanter, The Development of Disability Rights under International Law (Routledge, 2015) at 25.

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Under CRC Article 2, the Committee has underscored the insufficiency of measures adopted to ensure full access to education and health services for vulnerable groups.8 Specialised UN agencies have also adopted specific treaties relevant to disability. Significantly, the 1983 ILO Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159) (‘VREDPC’) requires Member States to adopt rehabilitation measures for all categories of disabled persons, aiming to promote employment opportunities in an open labour market, based on the principle of non-­ discrimination (Articles 3 and 4).9 In addition to human rights treaties, owing to the cross-sectoral nature of disability, non-human rights treaties concluded within the framework of the UN are relevant to disability. A significant example is climate change, which has a pervasive impact on society, and thus on disability. The Preamble to the UN Framework Convention on Climate Change (‘UNFCCC’)10 acknowledges that, in taking action on climate change, the Parties respect, promote and consider the rights of persons with disabilities, vulnerable people, children and women. The UNFCCC thus complements the CRPD, whose Preamble recognises the importance of mainstreaming disability issues in sustainable development strategies, in line with the principle of systemic integration outlined in the Vienna Convention on the Law of Treaties (‘VCLT’),11 and in the work of the ILC.12 Treaties have developed against the background of, and are complemented by, ‘soft’ law, such as the Universal Declaration of Human Rights (‘UDHR’), which was adopted by the UN General Assembly via Resolution 217A(III) in 1948,13 including general provisions concerning, for instance, the right to recognition as a person before the law under Article 6. The Declaration is now for the most part considered binding law. Moreover, several ad hoc resolutions adopted by the UN General Assembly target specific aspects of disability, notably, the 1975 UN Declaration on the Rights of Disabled Persons14 and the 1993 Standard Rules on the Equalization of Opportunities for Peoples with Disabilities.15

8  UN SG, Human Rights of Persons with Disabilities, Note, UN Doc. A/56/263, at paras. 4–6; CteRC, Report on the Sixteenth Session, UN Doc CRC/C/69, 26 November 1967, at para. 338. 9  Opened for signature 20 June 1983, 1401 UNTS 235, entered into force 20 June 1985. 10  Opened for signature 9 May 1992, 1771 UNTS 107, entered into force 21 March 1994. 11  Vienna Convention on the Law of Treaties, opened for signature 23 May 1969, 115 UNTS 332, entered into force 27 January 1980; Vienna Convention on the Law of Treaties between States and International Organisations or between International Organisations (VCLTIO), opened for signature 21 March 1986, UN Doc. A/ CONF.129/ 15, not yet in force. 12  ILC, Fragmentation of International Law: Difficulties Arising from the Diversification and Expansion of International Law, UN Doc. A/CN.4/L.682, 13 April 2006, at 25 ff. and 206 ff. 13  UN GA, Universal Declaration of Human Rights, Res. 217A(III), 10 December 1948. 14  UN GA, Declaration on the Rights of Disabled Persons, Res 3447 (XXX), 9 December 1975; 15  UN GA, Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Res. 48/96, Annex, 20 December 1993.

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8.2.2  T  he CRPD and the Committee on the Rights of Persons with Disabilities The CRPD establishes a specific sub-system under international human rights law. It details substantive disability rights, based on the principle of non-­discrimination.16 Schematically, CRPD Articles 10–23 and Article 29 govern civil and political (first-­ generation) rights, Articles 24–28 and 30 regulate economic, social and cultural (second-generation, or welfare) rights, and subsection (g) of the Preamble and Article 32(1)(a) embed sustainable development (third-generation) rights. Within this framework, the differential situation of the disabled entails not only a negative obligation of non-interference, but also positive State action to protect and fulfil disability rights in order to avoid discrimination. Procedurally, under CRPD Article 33, States must establish focal points and coordination mechanisms at the governmental level to implement disability rights, as well as additional mechanisms for promoting and monitoring implementation.17 For instance, in Austria the focal point and coordination mechanism is the Federal Ministry of Labour, Social Affairs and Consumer Protection, whilst an Independent Monitoring Committee has been established ad hoc to supervise the implementation of the CRPD.18 Otherwise, following the model provided by other core UN human rights treaties, the CRPD is enforced internationally via the CteRPD.19 The Committee includes 18 independent experts serving in their individual capacity, who are chosen from a list of persons nominated by the States at the Conference of the State Parties to the CRPD for four years, with the possibility of re-election (CRPD Article 34). The CteRPD can be seized in different ways. First, under CRPD Article 35, every four years, or upon request by the CteRPD, States submit to the Committee a report on measures taken to implement disability duties under the CRPD through the UN Secretary-General. Like any other human rights treaty, State compliance with reporting obligations is fundamental to the  See Emily Kakoullis and Ioshikazu Ikehara, ‘Article 1: Purpose’, in Ilias Bantekas, Michael Ashley Stein and Dimitri Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 35; Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 87. 17  See Valentin Aichele, ‘Article 33 National Implementation and Monitoring’, in Ilias Bantekas, Michael Ashley Stein and Dimitris Anastasiou (eds.), The UN Convention on the Rights of Persons with Disabilities: A Commentary (OUP, 2018) 978. 18  OHCHR, Study on the Implementation of Article 33 of the UN Convention on the Rights of Persons with Disabilities in Europe, at 17–18. See further Marianne Schulze, ‘Implementation of Article 33 CRPD in Austria: An Evolving Sense of Action’, in Gauthier De Beco (ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities: National Structures for the Implementation and Monitoring of the Convention (Brill, 2013) 171. 19  OHCHR, Committee on the Rights of Persons with Disabilities, https://www.ohchr.org/en/ hrbodies/crpd/pages/crpdindex.aspx; Tina Stavrinaki, ‘Optional Protocol to the Convention on the Rights of Persons with Disabilities’, in Bantekas, Stein and Anastasiou (eds.), The UN Convention (2018) 1218; De Beco, Disability (2021) at 87. 16

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implementation of the Convention.20 The Committee considers the reports and makes suggestions and recommendations (CRPD Article 36). The State concerned may respond to the Committee (CRPD Article 37(1)). State reports are transmitted to all parties to the CRPD (CRPD Article 37(3)), given internal publicity (CRPD Article 37(4)), and can be transmitted by the CteRPD to relevant UN agencies and other bodies, together with observations and recommendations (CRPD Article 37(5)). The weakness of CteRPD reports, like that of all human rights monitoring bodies, is their non-binding nature. Furthermore, individuals can submit to the CteRPD communications on violations of the CRPD (CRPD Optional Protocol Articles 1–2). If interpreted along the lines of other human rights treaties, this action should be subject to the previous exhaustion of effective domestic remedies.21 In this case, the Committee brings a communication to the attention of the State concerned, which provides explanations or statements clarifying the matter and any remedies (CRPD Optional Protocol Article 3). To avoid possibly irreparable damage to the victim, based on fumus boni juris and periculum in mora, the Committee can request a State to take interim measures (CRPD Optional Protocol Article 4). After examination, if necessary, the Committee forwards its suggestions and recommendations to both the State Party concerned and the petitioner (CRPD Optional Protocol Article 5). If it receives reliable information indicating grave or systematic violations of conventional rights by a State Party, the CteRPD invites the State to cooperate in the examination of the information and to submit observations (CRPD Optional Protocol Article 6(1)). To investigate the matter, the Committee can further designate members to conduct an inquiry and to report to the Committee, possibly including a visit to the State territory (CRPD Optional Protocol Article 6(2)). The Committee examines the findings of the inquiry and transmits them to the State Party concerned with comments and recommendations (CRPD Optional Protocol Article 6(3)). The State concerned cooperates with the Committee at all stages of the procedure and submits observations, within six months from notification (CRPD Optional Protocol Article 6(4)–(5)). If the State concerned does not reply within six months, the Committee can invite a reply on measures adopted in response to the inquiry, which can also be included in reports under periodic reviews according to CRPD Article 35 (CRPD Optional Protocol Article 7). However, States can exclude the competence of the Committee under CRPD Optional Protocol Articles 6 and 7 (CRPD Article 8). Under CRPD Article 38(1), UN specialised agencies and other bodies are entitled to be represented when the CteRPD considers the implementation of CRPD provisions that fall within the scope of their mandate. Furthermore, the Committee can invite UN specialised agencies and other competent bodies to provide expert advice on the implementation of the Convention. The Committee can also ask UN  HRC, Consideration of Reports Submitted by States Parties under Article 40 of the Covenant, Concluding Observations: Canada, UN Doc. CCPR/C/CAN/CO/5, 20 April 2006, at para. 6. 21  Chief Bernard Ominayak and the Lubicon Lake Band v. Canada, HRCte, Communication No. 167/1984, Suppl. No. 40 (1990) final views of 26 March 1990. 20

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organs and specialised agencies to submit reports on the implementation of the CRPD (CRPD Article 38(2)). Every two years, the CRPD reports to the UN General Assembly and ECOSOC on its activities, including suggestions, recommendations and comments from State Parties to the CRPD. Under CRPD Article 40, the Parties to the CRPD meet regularly to discuss disability rights and duties under the Convention and make decisions on its implementation. For instance, at the 11th meeting in 2018, the Conference discussed issues ranging from inclusion to the condition of women under the CRPD.22 The Conference noted, inter alia, the necessity of exploring public-private partnerships and international cooperation as a source of funding for disability-inclusive policies, with a view to achieving equitable, inclusive and sustainable development for disabled persons, particularly those living in poverty and the least developed countries.23

8.3  Disability Rights under the UN Charter In addition to general and thematic human rights treaties, disability rights are directly protected under the UN Charter. The UN Charter is a particular treaty regime, which has nonetheless quasi-universal effectiveness. The Preamble to the UN Charter states that ‘the peoples of the United Nations [are] determined … to reaffirm faith in fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women’. UN Charter Article 1(3) establishes that the UN is to promote and encourage respect for human rights and for fundamental freedoms for all without discrimination. Article 1(4) adds that the UN harmonises the action of nations in the attainment of such end. Five principal bodies established under the UN Charter are concerned with human rights. The General Assembly is the main deliberative policy-making and representative body of the UN and currently includes 193 States. The UN Security Council is in charge of critical security issues, which are often entangled with fundamental rights. The ECOSOC deals with economic, social and environmental questions. Headed by the UN Secretary-General, the Secretariat carries out programs defined by other UN branches, such as studies of economic, cultural and social trends. As the judicial branch of the UN, the International Court of Justice (‘ICJ’) adjudicates interstate disputes.24 For specific reasons, the involvement of these institutions is different in the area of disability rights and has given rise to innovative procedures. For instance, the ICJ has played no direct role in the development of disability rights thus far, probably because such rights involve individual interests well beyond its remit.  Conference of States Parties to the Convention on the Rights of Persons with Disabilities, Report of the Eleventh Session, UN Doc. CRPD/CSP/2018/5, 30 July 2018. 23  Ibid., at 8, para. 10. 24  Kent J. Kille and Alynna J. Lyon, The United Nations: 75 Years of Promoting Peace, Human Rights, and Development (ABC-CLIO, 2020) at 15 ff. 22

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UN Institutions and Disability Subsidiary Bodies • Human Rights Council

General Assembly

ECOSOC

Functional Commissions • Population and Development • Science and Technology for Development • Social Development • Statistics • Status of women • Sustainable Development

Secretriat

8.3.1

Programmes and Funds • UN Development Programme • UN Children’s Fund • UN Women • UN University

Regional Commissions • Economic Commission for Africa • Economic Commission for Europe • Economic Commission for Latin American and the Caribbean • Economic and Social Commission for Asia and the Pacific • Economic and Social Commission of Western Asia

Security Council

Other Bodies • Committee for Development Policy • Committee of Experts on Public Administration • Committee of Nongovernmental organisations • Permanent Forum on Indigenous Issues • Sessional and standing committees, expert, ad hoc and related bodies

Departments and offices • Department of Economic and Social Affairs • Department of Political Affairs • Department of Public Information • High Commissioner for Human Rights

Specialised Agencies • International Labour Organisation • UN Educational, Scientific and cultural Organisation • World Health Organisation • World Bank Group (IBRD, IDA, IFC, MIGA, ICSID) • International Monetary Fund

Special Envoy on Disability and Accessibility

Achieving Inclusiveness via the General Assembly and the Human Rights Council

The UN General Assembly is the plenary organ of the UN. As it deals with peace and security (UN Charter Article 11), the Assembly is naturally concerned with human rights. More specifically, under UN Charter Article 13(1)(b) the Assembly promotes international cooperation in the economic, social, cultural, educational and health fields and assists in the realisation of human rights and fundamental freedoms for all without discrimination. As such, it has a primary interest in disability. The Assembly has played a pivotal role in the establishment of the architecture of disability rights. From the 1950s through to the 1990s, the General Assembly adopted a series of resolutions promoting disability rights. Notable initiatives include the 1975 UN Declaration on the Rights of Disabled Persons,25 the 1982 World Programme of Action concerning Disabled Persons,26 the 1991 Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care,27 and the 1993 Standard Rules on the Equalization of Opportunities for Persons with Disabilities.28 In 2001, the Assembly adopted a Resolution establishing the ad hoc Committee to draft the CRPD as a holistic convention ‘codifying’, 25

UN GA Res. 3447 (XXX) of 9 December 1975. UN GA Res. 37/52 of 3 December 1982. 27 UN GA Res. 46/119 of 17 December 1991. 28 UN GA Res. 48/96 of 20 December 1993, Annex. 26

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‘progressively developing’ and ‘harmonising’ disability law.29 The General Assembly has thus outlined a blueprint for the regulation of disability rights worldwide. The General Assembly is particularly involved in the implementation of disability rights via its Third Committee, which deals with social, humanitarian affairs and human rights issues. In light of its focus on economic and financial questions, the Second Committee is also relevant to the area of disability. The Assembly also oversees the activity of UN funds and programmes supported by voluntary contributions; for instance, the UN Development Programme (‘UNDP’) plays a crucial role in the mainstreaming of disability within the context of sustainable development.30 Moreover, the Assembly established the HRC as a subsidiary body: the Council is one on the main actors in the area of disability rights. In 2006, the HRC succeeded the Commission on Human Rights as a subsidiary body of the General Assembly, which elects its 47 members.31 Working in cooperation with governments, regional organisations, national institutions and civil society, the Council exercises two essential functions: the promotion of human rights and the monitoring of human rights violations.32 The Council meets in regular sessions three times a year, as well as in special sessions, and reports to the Assembly. In 2011, the International Disability Alliance (‘IDA’) established a Task Force on Accessibility for Persons with Disabilities, which reports to the regular sessions of the HRC.33 In the area of disability, following-up on the work of the Human Rights Commission (‘HRCom’),34 the HRC has adopted a set of resolutions on disability rights.35 For instance, via Resolution 37/22, the HRC outlined the fundamental principles that States must follow to grant persons with disability access to justice, including: recognition of equality before the law based on legal capacity; accessibility and reasonable accommodation; participation in judicial or administrative processes and justice roles; improved capacity of public officials; and effective remedies for human rights violations.36 With regard to accessibility, the Council led the way and adopted the Accessibility Guide to the Human Rights Council for Persons with

 UN GA Res. 56/168 of 19 December 2001.  UNDP, Disability Guidance Note in UNDP, Guidance and Entry Points (2018). 31  UN GA Res. 60/251 of 15 March 2006. 32  Ibid., at para. 5. 33  IDA, Human Rights Council Task Force on Accessibility for Persons with Disabilities, http:// www.internationaldisabilityalliance.org/content/human-rights-council-task-force-accessibilitypersons-disabilities. 34  See, for instance, HRCom, Human Rights of Persons with Disabilities, UN Doc. E/CN.4/ RES/1998/31, 17 April 1998. 35  UN DESA, Disability – Human Rights Council, https://www.un.org/development/desa/disabilities/resources/human-rights-council.html. 36  HRC, Equality and Non-discrimination of Persons with Disabilities and the Right of Persons with Disabilities to Access to Justice, UN Doc. A/HRC/RES/37/22, 23 March 2018, at 3–4, para. 4. 29 30

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Disabilities,37 a document that embeds information on the functioning of the Council and how persons with disability can access it, spanning accreditation and accommodation. Furthermore, the HRC monitors human rights implementation via different mechanisms, notably, the universal periodic review (UPR), special procedures and complaint procedures.38 In the context of the UPR,39 the HRC UPR Working Group holds three sessions a year and, at each session, reviews sixteen countries, resulting in a four year-cycle to complete a review of all UN Member States. In its 2019 UPR recommendations to New Zealand, the HRC included suggestions concerning disability rights, spanning improved health, education and better economic security.40 In the course of the review process, the New Zealand Human Rights Commission submitted several observations on disability, underscoring that New Zealand’s legislation ‘does not consistently reflect UNCRPD obligations’.41 By means of resolutions, the HRC can institute special procedures, nominating special rapporteurs, independent experts or working groups to address major human rights violations, either concerning specific countries or thematic issues worldwide.42 Country-related mandates are renewed yearly by the HRC, whereas thematic mandates are renewed every three years. At the end of special procedures, which have a persuasive nature, the HRC may adopt resolutions calling upon a State to comply with human rights obligations. Current thematic mandates concern issues such as adequate housing; education; extreme poverty; freedom of opinion and expression; and health, which are relevant to disability. Amongst all, the work of the Special Rapporteur on the Rights of Persons with Disabilities (‘SRRPD’) is particularly important to the understanding of the evolution of disability rights at the UN. According to the mandate established via HRC Resolution 26/20 in 201443 and renewed in 2017 and 2020 via Resolution 35/644 and Resolution 44/10,45 the Special Rapporteurs Catalina Davendas Aguilar and Gerard Quinn have developed a regular dialogue with States and stakeholders to identify, exchange and promote best

 Second Version, 2018, https://www.ohchr.org/Documents/HRBodies/HRCouncil/2018Accessibi lityGuide.pdf. 38  HRC, Institution-building of the United Nations Human Rights Council, Res. 5/1, 18 June 2017. 39  Ibid., at para. 1. 40  Report of the Working Group on the Universal Periodic Review: New Zealand, UN Doc. A/ HRC/41/4, 1 April 2019, at 8, para. 73. See also Universal Periodic Review – New Zealand, https:// www.ohchr.org/EN/HRBodies/UPR/Pages/NZindex.aspx. 41  New Zealand Human Rights Commission, New Zealand’s Third Universal Periodic Review: Submission of the New Zealand Human Rights Commission, 12 July 2018, at 10, paras. 40–43. 42  HRC, Institution-building (2017) at para. 39. 43  HRC, Special Rapporteur on the Rights of Persons with Disabilities, UN Doc. A/HRC/26/L.9, 27 June 2014. 44  HRC, Special Rapporteur on the Rights of Persons with Disabilities, UN Doc. A/HRC/RES/35/6, 10 July 2017. 45  HRC, Special Rapporteur on the Rights of Persons with Disabilities, UN Doc. A/HRC/ RES/44/10, 23 July 2020. 37

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p­ ractices aimed at implementing disability rights. For this purpose, key tasks of the Rapporteur include exchanging information and communications on violations of disability rights, contacting States in this regard, making recommendations to promote and protect disability rights, cooperating with UN mechanisms and affording technical assistance to implement the rights of persons with disabilities. The annual reports of the Rapporteurs to the HRC and General Assembly cover issues that span inclusive policies,46 the right to health,47 older persons48 and inclusive equality.49 These reports are crucial for understanding the evolution of disability rights and underscore the need for an inclusive approach, whereby development also involves the disabled, according to the concept of ‘inclusive sustainability’. A key theme emerging from the work of the Special Rapporteurs for effective disability policies is the implementation of anti-discriminatory legal frameworks ensuring equal and effective protection, based on the principle of reasonable accommodation, with an emphasis on disabled women and Indigenous persons. A second fundamental principle is accessibility, including substantive rights to transportation, information and communication, programmes and services, as a pre-requisite to participating fully and independently in society. This entails the adoption of adequate support services, including wheelchairs, hearing aids and braille devices, as well as the systemic collection of statistical information underpinning disability policies. A third guiding principle is participation of the disabled in defining and implementing public policies, which is essentially a fundamental procedural right based on the observation that the disabled know better than anyone those societal barriers which need to be removed in order to best stem discrimination. Through complaint procedures,50 individuals and groups can submit to the HRC consistent patterns of gross and reliably attested violations of human rights and fundamental freedoms occurring in any part of the world. The HRC can request that the State concerned provide information within a reasonable time, appoint an independent expert to monitor the situation and report back to the Council, and recommend that the OHCHR provide cooperation, assistance and advice to the State concerned.51

 Catalina Davendas-Aguilar, Report, UN Doc. A/71/314, 9 August 2016.  Id., Report, UN Doc. A/73/161, 16 July 2018. 48  Id., Report, UN Doc. A/74/186, 17 July 2019. 49  Gerard Quinn, Report, UN Doc. A/75/186, 19 January 2021, at 6. 50  HRC, Institution Building (2007) at para. 85. 51  HRC, Institution Building (2007) at para. 109. 46 47

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8.3.2  T  he Global and Regional Action of the Economic and Social Council and the Commission for Social Development The ECOSOC includes 54 Members elected by the General Assembly, serving a three-year term and meeting twice a year (UN Charter, Chapter X). It is in charge of economic, social and environmental issues and makes recommendations to the General Assembly on human rights issues. The ECOSOC oversees several committees and commissions, such as the Committee on Human Rights, the Commission for Social Development (‘ComSocD’) and the Commission on the Status of Women, as well as UN specialised agencies such as the ILO and WHO. The ECOSOC played an important role in the drafting and negotiating process for the CRPD. Specifically, the ECOSOC promoted social development for persons with disabilities in the process leading to the adoption of the CRPD via the Commission for Economic and Social Development.52 Furthermore, the ECOSOC has taken a set of initiatives in the area of disability rights, particularly in light of the inclusive approach to the notion of development. The guiding principle for ECOSOC action is the need to eliminate discrimination via-à-vis the disabled. In 1997, the Council urged the UN, governments and NGOs to strengthen efforts to implement full participation and equality for the disabled, mainstreaming disability rights in action concerning issues such as children, eradication of poverty and education.53 Via a set of resolutions, the ECOSOC has promoted the mainstreaming of disability in the development agenda towards 2015 and beyond. For instance, via Resolution 2004/6 the Council invited the Special Rapporteur on Disability to the ComSocD to collaborate with States and relevant stakeholders, including the UN and private organisations, in implementing the Millennium Development Goals and other internationally agreed development goals for the disabled.54 In the view of the ECOSOC, the disabled are central to policies aimed at eradicating poverty, ensuring social protection and achieving full employment.55 Among the functional commissions of the ECOSOC, the ComSocD is the main operative branch in the area of disability rights. Not only has it fostered social development in the process leading to the adoption of the CRPD, but it has also decisively helped the promotion of disability rights on the international agenda. In 1994, the Commission appointed a Special Rapporteur on Disability to support the implementation of the Standard Rules on the Equalization of Opportunities for Persons  See, for instance, ECOSOC, Resolution on a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, 2003/12, 21 July 2003, at para. 3. 53  ECOSOC, Resolution on the Equalization of Opportunities for Persons with Disabilities, Res. 1997/19, 21 July 1997. 54  ECOSOC, Promoting the Rights of Persons with Disabilities and Mainstreaming Disability in the Post-2015 Development Agenda, UN Doc. E/RES/2014/6, 7 August 2014, at para. 5. 55  Ibid., at para. 6. 52

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with Disabilities.56 In 1997, the Commission drafted the Resolution on the Equalization of Opportunities for Persons with Disabilities,57 which was later endorsed by the UN General Assembly. This document establishes the anti-­ discriminatory proactive approach to disability, via the inclusive view that outlines the entire philosophy not only of the ECOSOC but also of the UN more generally. In 2018, the Commission underscored the need for mainstreaming systemically the implementation of the 2030 Agenda for Sustainable Development, fostering North-­ South, South-South and triangular cooperation, as well as multi-stakeholder partnerships and networking.58 From 2002 to 2006, the ComSocD actively contributed to the drafting process of the CRPD,59 particularly via the Special Rapporteur on Disability assisting the ad hoc Working Group on the Convention.60 Beyond the horizon of the CRPD, the Special Rapporteur has exercised a key role in the implementation of the equalisation of opportunities for the disabled, acting as an interface between governments, the UN and stakeholders to advance an inclusive disability agenda, with a special focus on Africa.61 The Regional ECOSOC Commissions for Africa (‘ECA’), Europe (‘ECE’), Latin-America and the Caribbean (‘ECLAC’), Asia-Pacific (‘ESCAP’) and Western Asia (‘ESCWA’) also play an important role in fulfilling disability rights. A common principle of action is the inclusion of disability rights into sustainable development. For instance, the ECA fosters an inclusive approach to disability in Africa, within the framework of the implementation of the 2030 Agenda for Sustainable Development.62 ESCAP closely monitors investment in accessibility in Asia and the Pacific, aiming to achieve sustainable development.63 The ECE strategy for the implementation of the 2030 sustainable development goals focuses on disability as a key issue.64

 UN GA Res. 48/96 of 20 December 1993, Annex.  ECOSOC, Resolution on the Equalization (1997). 58  CSocD, Accelerating the Implementation of the 2030 Agenda for Sustainable Development by, for and with Persons with Disabilities, UN Doc. E/CN.5/2019/4, 21 November 2018, at 17. 59  See, for instance, UN GA, Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, UN Doc. A/RES/60/232, 31 January 2006, Preamble. 60  See, for instance, CSocD, Comprehensive and Integral International Convention to Protect and Promote the Rights and Dignity of Persons with Disabilities, Draft Resolution, UN Doc. E/ CN.5/2006/L.4, 14 February 2006, at para. 3. 61  ECOSOC Special Rapporteur on Disability to the CSocD, Monitoring of the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, UN Doc. E/ CN.5/2015/5, 26 November 2014, at para. 13. 62   ECA, Inclusive and Sustainable Development in Africa: Institutional Arrangements for Implementing the 2030 Agenda and Agenda 2063 (2017) at 17. 63  ESCAP, Disability at a Glance (2019) at 42 ff. 64  UNECE, Towards Achieving the Sustainable Development Goals in the UNECE Region: A Statistical Portrait of Progress and Challenges (2020) at 16. 56 57

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8.3.3  T  he Eclectic Role of the Secretariat and the Office of the High Commissioner for Human Rights The UN Secretariat is organised based on departments, with different areas of action coordinating with each other. The Secretariat is headed by the Secretary-General, which acts in all meetings of the General Assembly, Security Council and ECOSOC (UN Charter Article 98). It also operates via the Regional Commissions of the ECOSOC. The Secretariat is particularly concerned with human rights and sustainable development and, as such, plays a fundamental role in the development and implementation of disability rights. Following Resolution 2002/61 of the HRCom, the Secretary-General reports annually to the General Assembly on the progress in implementing the rights of persons with disabilities.65 In 2019, the Secretary-General produced a report focusing on procedural safeguards for persons with mental disabilities.66 The Report underscores the absence of specific guidelines on the implementation of the rights of mentally disabled people and invites the HRCte to provide a general commentary on the issue.67 The Report highlights the need to supplement the Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care, for instance,68 in the matter of the recognition of an explicit right to refuse treatment for persons detained in psychiatric facilities.69 The Secretary-General also reports ad hoc to the General Assembly upon request. For instance, following the adoption of UN General Assembly Resolution 63/150 and Resolution 64/131,70 the Secretary-General has reported biannually on the implementation of the World Programme of Action concerning Disabled Persons. Within this framework, in 2010 the Secretary-General underscored the importance of including disability in the Millennium Development Goal core strategies, emphasising the need for the equalisation of opportunities in terms of substantive and procedural rights, as well as data collection.71  Commission on Human Rights, Human Rights of Persons with Disabilities, Resolution 2002/61 of 25 April 2002. 66  UN SG, Progress of Efforts to Ensure the Full Recognition and Enjoyment of the Human Rights of Persons with Disabilities, UN Doc. A/58/181 (2019). 67  Ibid., at para. 43. 68  UN GA, Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care, Res. 46/119 of 17 December 1991. 69  UN SG, Progress of Efforts (2019) at para. 45. 70  UN GA, Realizing the Millennium Development Goals for Persons with Disabilities through the Implementation of the World Programme of Action concerning Disabled Persons and the Convention on the Rights of Persons with Disabilities, UN Doc.A/RES/63/150, 11 February 2009; UN GA, Realizing the Millennium Development Goals for Persons with Disabilities, UN Doc. A/ RES/64/131, 3 February 2010. 71  See, for instance, UN SG, Keeping the Promise: Realizing the Millennium Development Goals for Persons with Disabilities towards 2015 and Beyond, Report to the General Assembly, UN Doc. A/65/173 (2010) at para. 55. 65

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In 2020, the Secretary-General adopted a policy brief on the necessity of a disability-­inclusive response to COVID-19. The brief highlights the uneven impact of pandemics on the disabled, who is more exposed to deadly consequences, including the fact that nearly 46 per cent of older people are also categorised as persons with disabilities.72 The policy brief therefore calls for a response based on participation and accessibility, spanning health information, services and education.73 The Department of Economic and Social Affairs (‘DESA’) of the Secretariat is particularly active in promoting the rights of persons with disabilities. Its core functions include support to inter-governmental bodies such as the General Assembly and ECOSOC; service to the CRPD Conference of State Parties; development of the international and national normative framework on disability; and mainstreaming disability in the development agenda, including the Sustainable Development Goals (‘SDGs’) and other internationally agreed development goals.74 The DESA co-­ chairs the UN Inter-Agency Support Group on the CRPD. The Secretary-General also instituted the Special Envoy on Disability and Accessibility, currently Ms. María Soledad Cisternas Reyes, whose function is to promote the rights of persons with disabilities at the regional and global level.75 The Special Envoy collaborates with other UN organs specialised in the area of disability; in 2020, in conjunction with the CteRPD, the Special Envoy adopted a Joint Statement underscoring, inter alia, the need to accelerate measures of deinstitutionalisation for persons with disabilities.76 Funds and programmes active in the area of disability, such as the UNDP, are accountable to the Secretary-General. Furthermore, via Resolution 48/141 of 20 December 1993,77 the UN General Assembly created the OHCHR as an agency of the Secretariat to offer the best expertise and support to the different human rights monitoring organs within the UN system. The OHCHR includes the Secretariat to the CRPD and has constantly improved its work on disability. For instance, the Office has increased support for the Special Rapporteur of the ComSocD, with an emphasis on encouraging UN human rights mechanisms, including treaty bodies, to pay increased attention to disability rights and support NGOs in their improved interactions with UN human rights mechanisms.78 Thus, in the context of a technical

 UN SG, Policy Brief: A Disability-Inclusive Response to COVID-19 (2020) at 4.  Ibid., at 10 ff. 74  UN DESA, Disability, https://www.un.org/development/desa/disabilities/about-us.html. 75  Id., Special Envoy on Disability and Accessibility, https://www.un.org/development/desa/disabilities/resources/special-envoy-of-the-secretary-general-on-disability-and-accessibility.html. 76  Chair of the United Nations Committee on the Rights of Persons with Disabilities, on behalf of the Committee on the Rights of Persons with Disabilities and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility, Persons with Disabilities and COVID-19, Joint Statement (2020) at para. 5. 77  UN GA, High Commissioner for the Promotion and Protection of All Human Rights, A/ RES/48/141, 7 January 1994. 78  UN SG, Human Rights of Persons with Disabilities, Note, UN Doc A/56/263, 2 August 2001, at 3, para. 19. 72 73

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cooperation project between the OHCHR and Uganda, a public hearing on disability was established on 23 October 2000.79 The OHCHR has prepared several reports and thematic studies mandated by the HRC which provide analytical information on disability rights outlined in the CRPD.80 For instance, in 2014 the OHCHR completed a thematic study on the right of persons with disabilities to live independently and to be included in the community.81 This is a crucial element to achieve equality in society and entails, according to the Report, deinstitutionalisation, individualised support services and inclusive mainstream services.82 In 2017, the OHCHR produced a Report on Mental Health and Human Rights.83 The Report maps the area and recommends a number of policy shifts, including measures to improve the quality of mental health service delivery, ending non-voluntary treatment and creating a law and policy environment for the realisation of the fundamental rights of persons with mental health conditions and psychosocial disabilities. In 2020, the OHCHR prepared a study considering disability rights in the context of climate change, spanning health, adequate housing, water and sanitation.84 The study highlighted that several countries have passed legislation on the relationship between climate change and disability rights; for instance, the Swedish public health authority has identified relevant action areas, pointing out that persons with disabilities are particularly at risk from increasing temperatures.85 However, the study underscores the need for more inclusive climate policies for States to protect, respect and fulfil disability rights,86 and the importance of disability-inclusive climate policies and finance.87

8.3.4  Security Council: Progressive Developments The UN Security Council has not been particularly involved in disability governance. This means that, thus far, the concept of disability has not been considered a key issue within the framework of the maintenance of peace and security. Some scholars have underscored the disengagement of the Security Council with respect to disability issues. It is particularly noted that, in dealing with the role of  Ibid., at 4, para. 20.  UN DESA, Disability – Human Rights Council, https://www.un.org/development/desa/disabilities/resources/human-rights-council.html. 81  OHCHR, The Right of Persons with Disabilities to Live Independently and to Be Included in the Community, UN Doc. A/HRC/28/37, 12 December 2014. 82  Ibid., at 16–17, paras 58–66. 83  OHCHR, Mental Health and Human Rights, UN Doc. A/HRC/34/32, 31 January 2017. 84  OHCHR, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc. A/HRC/44/30, 22 April 2020. 85  Ibid., at para. 53. 86  Ibid., at para. 60. 87  Ibid., at paras 60 ff. 79 80

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women via Resolution 1325/2000,88 the Security Council completely excluded consideration of women with disabilities.89 The Resolution protects women and involves them in decision-making as regards the maintenance of peace and security, including conflicts, peace-building and peacekeeping.90 To coordinate activities throughout the UN and implement the Resolution, the Interagency Network on Women and Gender Equality (‘IANWGE’) established the Interagency Taskforce on Women, Peace and Security, including UN Agencies such as the ILO, OHCHR, the Department for Peacekeeping Operations (‘DPKO’) and UNDP.91 The Taskforce has worked to ensure that gender perspectives are included in the activities of relevant UN bodies. In this respect, it has been noted that a lack of data and information has hampered the implementation of Resolution 1325/2000 with respect to women with disabilities.92 Furthermore, there is a scarcity of references to women with disabilities in national action plans implementing the Resolution.93 In 2019, via Resolution 2475 the Security Council adopted its first measures directly addressing people with disability.94 The Resolution is concerned with the disproportionate impact of armed conflicts on persons with disabilities and urges States to protect their rights. On the one hand, the emphasis of the Resolution is on the State obligation to prevent and punish violations of the rights of persons with disabilities, such as killing.95 On the other hand, the Resolution underscores the State obligation to fulfil disability rights. This entails providing and facilitating assistance, including reintegration, rehabilitation and psychosocial support.96 It also involves the granting of access to fundamental services such as education and health, as well as participation in decision-making.97 The Resolution further requires data collection as a necessary element for adequate implementation policies.98 The US delegation welcomed the Resolution as a ‘ground-breaking’ development for a UN institution that has thus far ‘not sufficiently engaged’ with persons with disabilities.99  UN SC, Women, Peace and Security, UN Doc. S/RES/1325, 31 October 2000.  Stephanie Ortoleva, ‘Who’s missing? Women With Disabilities in UN Security Council Resolution 1325 National Action Plans’ (2011–12) 18(2) ILSA Journal of International and Comparative Law 395, at 397 ff. 90  UN SC, Women (2000), at para. 1. 91  IANWGE, Taskforce on Women, Peace and Security, https://www.un.org/womenwatch/ianwge/ activities/tfwpsecurity.htm. 92  Ortoleva, ‘Who’s Missing? (2011–12) at 398. 93  Ibid., at 399. 94  UN SC, Protection of Persons with Disabilities in Armed Conflict, UN Doc. S/RES/2475, 20 June 2019. 95  Ibid., at paras 1–2. 96  Ibid., at para. 4. 97  Ibid., at paras 5–6. 98  Ibid., at para. 9. 99  DESA, UN Security Council Adopted Its First-Ever Resolution on Protection of Persons with Disabilities in Conflict (2019), https://www.un.org/development/desa/disabilities/news/dspd/un-­ security-­council.html. 88 89

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8.3.5  U  N Specialised Agencies, Partnerships and Other UN Organs Specialised agencies are independent, autonomous organisations that are part of the broader UN system. The ECOSOC coordinates UN activities with the specialised agencies. The heads of the specialised agencies also meet with the Secretary General regularly. The ILO has been particularly active in promoting the labour rights of persons with disabilities. In addition to the Vocational Rehabilitation (Disabled) Recommendation100 and Convention,101 the Organisation has adopted a set of relevant regulatory instruments, such as the 1962 Equality of Treatment (Social Security) Convention (No. 118).102 Among non-binding initiatives, the Guidelines on Achieving Equal Employment Opportunities for People with Disabilities through Legislation address policy-makers and promote a reappraisal of disability rights in light of the CRPD.103 These Guidelines provide recommendations on issues such as the implementation of quota schemes and support measures for the disabled at work.104 The WHO is by its very nature concerned with disability and has adopted soft regulatory instruments, often in collaboration with other UN specialised agencies. In conjunction with the World Bank, in 2011 the WHO adopted the World Report on Disability, which provides policy advice on how to overcome barriers to health care, rehabilitation, education, employment, and support services.105 In 2013, together with UNESCO and other organisations, the WHO adopted the 2014–2021 Global Disability Action Plan and Guidance Note on Disability and Emergency Risk Management for Health, which provides guidance on removing barriers in access to health; strengthening rehabilitation and support services; and enhancing data collection and research.106 Within the framework of its mandate, the UNESCO supports the inclusion of learners with disabilities. For instance, disability is a key theme in the UNESCO

 ILO Doc. R099, adopted on 22 June 1955.  See s 2.2. 102  Opened for signature 28 June 1962, ILO C 118, entered into force 25 April 1964. 103  ILO, Guidelines on Achieving Equal Employment Opportunities for People with Disabilities through Legislation (1st ed. 2007, 2nd ed. 2014), https://www.ilo.org/wcmsp5/groups/ public/%2D%2D-ed_emp/%2D%2D-ifp_skills/documents/publication/wcms_322685.pdf. 104  Ibid., at 43 ff. 105  WHO and World Bank, World Report on Disability (2011), https://www.who.int/publications/i/ item/world-report-on-disability. 106  WHO et al., Global Disability Action Plan and Guidance Note on Disability and Emergency Risk Management for Health (2013), https://www.who.int/hac/techguidance/preparedness/disability/en. 100 101

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Teaching Respect for All initiative, a joint UNESCO-US-Brazil project launched in January 2012 to counteract discrimination in and through education.107 Established in 2006 upon a decision by the UN Chief Executives Board, the Inter-Agency Support Group for the CRPD (‘IASG’) promotes compliance with the Principles of the Convention and improves the engagement of the UN with disability.108 The Group includes the OHCHR and DESA as part of the Secretariat, which is currently chaired by the ESCAP, as well as a set of institutional UN bodies, ranging from departments of the UN Secretariat to the Regional Commissions, funds and specialised agencies. A key theme of the Group is the inclusion of the disabled into sustainable development.109 In 2011, UN departments (OHCHR, DESA) agencies (WHO, ILO) and funds (UNDP, UNICEF) established the UN Partnership on the Rights of Persons with Disabilities (UNPRPD). The Partnership supports the implementation of the CRPD at the country level, particularly by sponsoring inclusive programmes in different States.110 In addition to UN human rights bodies, non-human rights UN institutions work on disability. This is the case of the UN Commission on Trade and Development (‘UNCTAD’), which seeks to mainstream disability rights in the implementation of sustainable trade and investment policies.111

8.4  Conclusion Disability (rectius, different ability) rights are protected and promoted by the UN in two ways, particularly via UN treaties and the UN Charter. General treaties such as the ICCPR and ICESCR and their monitoring system are of interest to disability rights, given that these conventions proscribe discrimination against all, thus implicitly including persons with disabilities. Similarly, specific human rights treaties, such as the CEDAW, tacitly include the disabled. In addition, specific provisions in core human rights conventions explicitly address disability; this is particularly the case of CRC Article 23. As a ‘thematic’ treaty, the CRPD

 UNESCO, Teaching Respect for All: Implementation Guide (2014), https://unesdoc.unesco.org/ ark:/48223/pf0000227983. 108  Inter-Agency Support Group for the CRPD, https://www.un.org/development/desa/disabilities/ about-us/inter-agency-support-group-for-the-convention-on-the-rights-of-persons-with-­ disabilities.html. 109  IASG, Including the Rights of Persons with Disabilities in United Nations Programming at Country Level, A Guidance Note for United Nations Country Teams and Implementing Partners (2011), https://www.un.org/disabilities/documents/iasg/undg_guidance_note_final.pdf. 110  UN Partnership on the Rights of Persons with Disabilities, http://www.unprpd.org. 111  Nairobi Maafikiano, From Decision to Action: Moving towards an Inclusive and Equitable Global Economic Environment for Trade and Development UNCTAD, TD/519/Add.2, 5 September 2016, at 21, para. 72. 107

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includes specific disability rights and is implemented particularly via the action of the CteRPD, with a power of recommendation via-à-vis Member States, following the classical implementation mechanisms under the CRPD. Another key thematic treaty is the 1983 ILO VREDPC, which promotes employment opportunities in an open labour market for the disabled. Also treaties outside the human rights framework embed disability rights, for instance, the UNFCCC. Within the context of protection afforded at the general UN level, in light of their cross-sectoral nature, several UN organs are involved in the development and implementation of disability rights. Three main bodies are concerned: (1) the UN General Assembly, particularly via the HRC; (2) ECOSOC, notably via the CteSocD, and (3) the Secretariat, particularly via the DESA. Although these different organs have specific responsibilities, they interact significantly. In this context, the specificity of substantive disability rights, entailing the necessity of collecting data and ensuring extensive participation of interested stakeholders, has spawned new interaction between UN organs, as particularly shown by the Interagency Support Group for the CRPD. New practices also involve private actors, as in the case of the collaboration between the IDA and HRC.  Within and outside the context of partnerships, the cross-sectoral nature of disability rights involves action by non-specialised UN organs; for instance, this is the case of the UNCTAD, which is prompting an inclusive sustainable development strategy for the disabled. UN Charter-based organs and CRPD-based organs are not conceived of in isolation, but rather interact. A clear example is the cooperation between the CteRPD and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility in preparing the 2020 Joint Statement on Persons with Disabilities and COVID-19. The whole system establishes a complex machinery, whereby several institutions interact and develop a remarkable set of recommendations addressing States; whilst recommendations are not binding, their domestic application is facilitated by the internal mechanisms to implement disability rights and monitor their implementation under CRPD Article 33. The system fundamentally aims to achieve inclusive development, based on the concepts of independent living, accessibility and participation. This is particularly challenging as concerns intellectual disability and requires a change of paradigm by States in light of the notion of deinstitutionalisation.

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Vienna Convention on the Law of Treaties between States and International Organisations or between International Organisations (VCLTIO), opened for signature 21 March 1986, UN Doc. A/ CONF.129/ 15, not yet in force. Vienna Convention on the Law of Treaties, opened for signature 23 May 1969, 115 UNTS 332, entered into force 27 January 1980. Vocational Rehabilitation and Employment (Disabled Persons) Convention, opened for signature 20 June 1983, 1401 UNTS 235, entered into force 20 June 1985. WHO and World Bank. 2011. World Report on Disability. WHO et al. 2013. Global Disability Action Plan and Guidance Note on Disability and Emergency Risk Management for Health. Working Group on the Universal Periodic Review. 2019. Report: New Zealand. UN Doc. A/ HRC/41/4.

Cases HRCte, Chief Bernard Ominayak and the Lubicon Lake Band v. Canada. Communication No 167/1984, Supp. No. 40 (1990) final views of 26 March 1990.

Bibliography Aichele, V. (2018). Article 33 National implementation and monitoring. In I. Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (p. 978). Oxford University Press. Bantekas, I., Ashley Stein, M. & Anastasiou, D. The UN Convention on the Rights of Persons with Disabilities: A commentary. OUP. De Beco, G. (Ed.). (2011). Article 33 of the UN Convention on the Rights of Persons with Disabilities: National structures for the implementation and monitoring of the convention. Brill. De Beco, G. (2021). Disability in international human rights law. Oxford University Press. Kakoullis, E., & Ikehara, I. (2018). Article 1: Purpose. In I. Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (p. 35). Oxford University Press. Kanter, A. S. (2015). The development of disability rights under international law. Routledge. Kille, K. J., & Lyon, A. J. (2020). The United Nations: 75 years of promoting peace, human rights, and development. ABC-CLIO. Ortoleva, S. (2011–12). Who’s missing? Women with disabilities in UN Security Council Resolution 1325 national action plans. ILSA Journal of International & Comparative Law, 18(2), 395. Schulze, M. (2013). Implementation of Article 33 CRPD in Austria: An evolving sense of action. In G. De Beco (Ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities: National structures for the implementation and monitoring of the convention (Vol. 171). Brill. Stavrinaki, T. (2018). Optional protocol to the Convention on the Rights of Persons with Disabilities: In I. Bantekas, M. A. Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities: A commentary (Vol. 1218). Oxford University Press.

Chapter 9

European Legal Systems and Disability Rights Anne McNaughton

Contents 9.1  9.2  9.3  9.4 

Introduction The EU, Its Member States and Their Blended Sovereignty Development of Disability Rights in the EU Disability Rights in the EU Legal System 9.4.1  EU Institutions and Disability Rights 9.4.2  Institutional Structures in the Member States: A Case Study 9.5  Building a Union of Equality: The EU Strategy for the Rights of Persons with Disabilities 2021–2030 9.5.1  The Six Flagship Initiatives 9.5.1.1  Flagship 1: A European Resource Centre 9.5.1.2  Flagship 2: A European Disability Card 9.5.1.3  Flagship 3: Commission Recommendations to Member States 9.5.1.4  Flagship 4: Commission’s Package to Improve the Labour Market 9.5.1.5  Flagship 5: Establishing the Disability Platform 9.5.1.6  Flagship 6: Adopting a Renewed Human Resources Strategy in the Commission 9.5.2  Evaluation of the Strategy 9.6  The EU, Disability Rights and the Council of Europe System 9.6.1  The Council of Europe and Disability Rights 9.6.2  Perspectives Disclosed by the Accession of the EU to the ECHR 9.7  Conclusion References

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Abstract  For several reasons, Europe is a particularly significant region as concerns the implementation of the rights of persons with disabilities (different abiliMy heartfelt thanks go to the editor of this collection, Dr Ottavio Quirico, for his patience, friendship and assistance with this chapter. I also thank Lucas Humbel, for his assistance in preparing the footnotes and reference. The usual caveats apply. A. McNaughton (*) ANU Centre for European Studies and ANU College of Law, The Australian National University, Canberra, Australia e-mail: [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_9

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ties). First, it includes two different legal systems that are relevant to disability rights, that is, the European Union (‘EU’) and the Council of Europe. Whereas the EU has a wider focus on the development of a ‘closer union’ based on the common market, the Council of Europe focuses more specifically on human rights. Second, the EU itself entails a complex set of relations between the Union as an international organisation and its Member States, which concluded the Convention on the Rights of Persons with Disabilities as a mixed agreement. This contribution argues that, in a human rights context reinforced by the foreseeable accession of the EU to the European Convention on Human Rights, the pace of the development of disability rights depends on the political will of the EU Member State governments, rather than that of the EU institutions. Keywords  European Union · Council of Europe · Disability (different ability) strategy

9.1  Introduction Europe is a particularly interesting and significant region as concerns the implementation of the rights of persons with disabilities. First, there are two different and fundamental legal systems implementing disability rights: the European Union (EU) and the Council of Europe. Whilst the EU has a broader focus on the development of an ‘ever closer union’, to be achieved through the realisation of an internal market, the Council of Europe has a more specific focus on fundamental rights. Second, the EU itself entails a complex set of relations between the Union per se and its constituent Member States. Both the EU and its Member States are parties to the Convention on the Rights of Persons with Disabilities (CRPD),1 which was concluded as a mixed agreement.2 Since declaring the EU3 to be a ‘new legal order of international law’4 the European Court of Justice (ECJ) and the EU’s judicial system have been central to the integration of the Member States into this novel legal order, the hallmark of which is the concept of ‘supranationality’.5 This concept is anchored in three

 Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008.  ‘Mixed Agreement’ is the term used for international agreements the subject matter of which falls within both the exclusive competence of the EU and the shared competence of the EU and the Member States, which is now expressly enumerated in Articles 2–6 of the Treaty on the Functioning of the European Union (opened for signature 13 December 2007, entered into force 1 December 2009). 3  For the sake of convenience, the acronym EU will be used in this chapter to refer to the current entity and its predecessors (EEC, EC, Euratom and ECSC). 4  Van Gend en Loos v. Nederlandse Administratie der Belastingen, Case C-26/62 [1963] ECR 1, 12. 5  There is an extensive and increasing literature, both general and specific, on the law, politics and history of the EU.  The following introductory texts provide a comprehensive overview of the 1 2

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f­ oundational decisions of the ECJ,6 concluded prior to the first enlargement of 1973.7 With this novel jurisprudential foundation, the institutions of the EU and those of the Member States have worked together in an elaborate dialogue, coordinating an everexpanding policy field. From its initial focus on economic integration and the rights of workers, the EU’s policy scope has expanded over time to include a variety of areas of social policy, including that addressing the rights of persons with a disability.8 As EU Member States have integrated their societies beyond economic interests, they have empowered the EU institutions to legislate in these broader policy areas, sharing legislative competence and a blended sovereignty pursuant to which the EU (as noted above) has become a party to the CRPD in its own right. That Convention has provided the legal basis for much of the EU’s legal development in the social policy area. Legislative competence in this area is not, however, exclusive to the EU. Rather, disability rights lie in the area of competence shared between the EU per se and the Member States. This chapter explores the complex set of relations that are the consequence of the exercise of shared competence across the EU. The discussion also examines the Council of Europe’s regime for the protection of people with disabilities. Before addressing the development and implementation of disability rights in the EU in detail, it is important to first elaborate on the unique nature of the blended sovereignty and the shared competences exercised within the EU.

9.2  T  he EU, Its Member States and Their Blended Sovereignty Historically, the ‘ever closer union’ to which reference is made in the Preamble of the Treaty Establishing the European Economic Community (EECT)9 was to be achieved through the establishment and reinforcement of first a ‘common’ and subsequently an ‘internal’ market. The Preamble itself indicated the broader social

development of the EU: Damian Chalmers, Gareth Davies and Giorgio Monti, European Union Law: Text and Materials (Cambridge University Press, 4th ed., 2019); Catherine Barnard and Steve Peers (eds.), European Union Law (Oxford University Press, 3rd ed., 2020); Paul Craig and Gráinne de Búrca, EU Law: Text, Cases, and Materials (Oxford University Press, 7th ed., 2020); Id. (eds.), The Evolution of EU Law, (Oxford University Press, 3rd ed., 2021). 6  Van Gend en Loos (1963); Costa v. ENEL, Case C-6/64 [1964] ECR 585; Commission of the European Communities v. Council of the European Communities [1971] ECR 263. 7  In 1973, membership of what is now the EU expanded from the original six Member States (Germany, France, Italy, Belgium, Netherlands and Luxembourg) to include the United Kingdom, Republic of Ireland and Denmark. 8  I echo here the apology with which this volume opens and reiterate the hope expressed there that we may soon see the international lexicon shift from ‘disability’ to ‘different ability’ or ‘differently abled’. 9  The predecessor of the Treaty on the Functioning of the European Union: opened for signature 25 March 1997, 298 UNTS 11, entered into force 1 January 1958.

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ambitions of the founding Member States.10 However, the specific policy areas in respect of which they had conferred on the EU institutions the most extensive competence to act were economic. The market was based on four pillars or fundamental freedoms: the free movement of goods, services, people (initially only workers ie labour) and capital (EECT Article 3).11 Social policy was dealt with in Title III of Part III of the Treaty of Rome.12 Pursuant to EECT Article 118, the Commission was only empowered to promote close cooperation between Member States in the social field particularly in matters relating to employment and associated matters.13 The remaining Treaty provisions dealt with ensuring and applying the principle ‘that men and women should receive equal pay for equal work.’14 European social policy was thus originally anchored by the (able-bodied) worker (and his rights), concerned with very little beyond the employment context. To the extent that there were any measures concerning people with disabilities, they were unequivocally within the scope of Member State competence. In the ensuing decades, due in large part to the innovative jurisprudence of the ECJ and consequential secondary measures of EU law, the scope of social policy in the EU expanded to its current reach.15 Nevertheless, the competence of the EU institutions in the area of social policy remains a shared competence.16 However, the Member States have also conferred on the EU institutions the competence to carry out actions ‘to support, coordinate or supplement the actions of the Member States’ in several policy areas including the protection and improvement of human health;17 civil protection;18 and administrative cooperation.19 This express competence is supplemented by provisions of general application in Articles 7–17 of the Treaty on European Union (TEU)20 pursuant to which the Union shall, inter alia, in defining

 In the preamble of the 1957 Treaty the founding Member States are ‘determined to lay the foundations of an ever closer union among the peoples of Europe; RESOLVED to ensure the economic and social progress of their countries…AFFIRMING as the essential objective of their efforts the constant improvement of the living and working conditions of their peoples …’ (emphasis added). 11  These ‘four freedoms’ were dealt with in Titles I (Arts 9 – 37) and III (Arts 48 – 73), EECT; now Part III, Title II (Arts 26 – 37) and Title IV (Arts 45 – 66), TFEU. 12  Articles 117–128 EECT. 13  Occupational health and safety, working conditions and social security, for example. 14  Article 119 EECT. 15  A succinct and valuable account of both this expansion and its underlying political tensions is set out in Philippe Pochet, ‘Twenty Years of the Publication of “Social policy in the European Union”: What Have We Learned?,’ in Bart Vanhercke et al. (eds.), Social Policy in the European Union 1999–2019: The long and Winding Road (European Trade Union Institute and European Social Observatory, 2020) 13, at 15 ff. 16  Article 4(b) TEU. 17  Article 6(a) TEU. 18  Article 6(f) TEU. 19  Article 6(g) TEU. 20  Opened for signature 7 February 1992, entered into force 1 November 1993. 10

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and implementing its policies and activities, ‘ … aim to combat discrimination based on … disability …’.21 In respect of social policy generally and as it concerns people with disabilities specifically, the EU depends to a great extent on soft law measures to support, supplement and coordinate the social policies of the Member States. This will be discussed in further detail below. Policy settings in the EU concerning disability rights are dependent to a great extent on those of the 27 Member States. This is not a policy area in which a ‘top down’, legislative hierarchy exists. Achieving any level of policy coherence in this area requires continuous dialogue and the careful, intelligent management of a variety of relationships across all 27 Member States. The Open Method of Coordination (OMC)22 is one of the regulatory tools used to do this. It is necessary to make the point explicitly about the strength and extent of EU competence in the field of disability rights from the outset for two reasons: • in order to have a clear appreciation of the extent to which the EU institutions can act in this field in spite of the position of the Member States; and • to understand the extent to which the speed of progress in implementing international obligations concerning disability rights is determined by the extent to which the individual Member States comply with their obligations under international law. Having established these parameters, the chapter now turns to the specifics of the development and implementation of disability rights in the EU.

9.3  Development of Disability Rights in the EU The development of disability rights in Europe began in the 1970s.23 At that time, the EU per se had no competence to initiate measures in the area of disability and it was the Member States, working through what is now the Council of the European Union24 that adopted a political measure to direct developments in this policy field in the Member States. In 1974, the Council adopted a Resolution outlining the  Article 10 TEU.  The OMC is a soft law, policy-making process, originating in the EU in the 1990s. It was formally defined in the Lisbon Council of 2000 as a tool of the Lisbon Strategy. It provides a new framework for cooperation between the Member States in certain policy areas; it does not result in binding EU law nor require Member States to change their domestic laws. See further, Glossary of Summaries: https://eur-lex.europa.eu/summary/glossary/open_method_coordination.html; and Martina Prpic, The Open Method of Coordination, Members’ Research Service, European Parliamentary Research Service: https://www.europarl.europa.eu/EPRS/EPRS-AaG-542142Open-Method-of-Coordination-FINAL.pdf. 23  See further Mark Priestley, Lisa Waddington and Carlotta Bessozi, From Rome to Nice in a Wheelchair, The Development of a European Disability Policy (Europa Law Publishing, 2006). 24  This institution, originally the Council of Ministers of the European Economic Community, was renamed in the 2009 Lisbon Treaty. 21 22

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Initial Community Action Programme for the Vocational Rehabilitation of Handicapped Persons, seeking to establish a European network involving rehabilitation and training bodies in the Member States.25 In the 1980s, the European Commission adopted the first action programmes, notably, the First Community Action Programme on the Social Integration of Handicapped People (1983–1988)26 and the HELIOS I Community Action Programme for Disabled People.27 In the 1990s, the EU followed the inclusive approach prompted by the UN and adopted the HELIOS II Community Action Programme to assist Disabled People for the period 1993–1996.28 In 1996, the Commission adopted the first comprehensive disability strategy, concerning ‘Equality of Opportunity for People with Disabilities’.29 In 1997, the Treaty of Amsterdam30 modified the Treaty Establishing the European Community (TEC) adopted in Maastricht in 1992,31 including an explicit prohibition of discrimination on the ground of disability under Article 13. TEC Article 13 as amended by the Treaty of Amsterdam – now Article 19 of the Treaty on the Functioning of the European Union (TFEU)32 – vested the Council, acting in concert with the Commission and the Parliament, with the power to take appropriate action and combat discrimination based on disability. In so doing, Member States not only conferred on the EU institutions the competence to act in this regard but also imbued the EU with the requisite sovereignty blended with that of the Member States themselves – from which the legitimacy of subsequent legislative acts flows. In 2000, the Charter of Fundamental Rights of the EU (EUCFR)33 solemnly affirmed the principle of non-discrimination in Articles 20 and 21(1) and established, under Article 26, the right of the disabled to benefit from measures granting independence, social and occupational integration and participation in the life of the community. In 2009, the Lisbon Treaty34 introduced a new provision, TFEU Article 10 which establishes the Union’s aim to combat discrimination, based, inter alia, on disability. The Treaty also made the EUCFR a binding instrument, together with the TEU and TFEU. Along with these developments at the level of primary EU law, in

25  Council Resolution of 27 June 1974 Establishing the Initial Community Action Programme for the Vocational Rehabilitation of Handicapped Persons (1974–1979) [1974] OJ C 80/30, at para. 1. 26  [1981] OJ C 347/1. 27  [1988] OJ L 104/38. 28  Council Decision 93/136/EEC of 25 February 1993 on HELIOS II Community Action Programme to Assist Disabled People (1993–1996) [1993] OJ L 56/30. 29  Commission of the European Communities, Communication on Equality of Opportunity for People with Disabilities: A New European Community Disability Strategy’, Communication COM(96) 406, 30 July 1996. 30  Opened for signature 2 October 1997, entered into force1 May 1999. 31  Opened for signature 7 February 1992, entered into force 1 November 1993. 32  Opened for signature 13 December 2007, entered into force 1 December 2009. 33  Adopted 18 December 2000. 34  Opened for signature 13 December 2007, entered into force 1 December 2009.

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2003, the EU adopted an Action Plan on the ‘Equal Opportunities for People with Disabilities’, for the period 2003–2010.35 In 2010, the EU ratified the CRPD as a mixed agreement, although it has not yet ratified the Optional Protocol, including key enforcement mechanisms. Following the signature and ratification of the CRPD, the EU adopted the European Disability Strategy 2010–2020, aiming to implement obligations under the Convention.36 The Strategy combined the potential of the CRPD, EUCFR and TFEU and established the priorities of accessibility, participation, non-discrimination, employment, education and training, health, social protection and external action. This has led to a cross-cutting inclusion of disability rights throughout the different areas of EU law and policy. In March, 2021, the Commission adopted the EU Strategy for the Rights of Persons with Disabilities 2021–2030 that builds on the work done under the previous Strategy.37 Under the new Strategy, the Commission will follow the accession of Member States to the Protocol and ‘will re-examine the EU’s ratification of the … Protocol in that light.’38 Within the context of the 2030 Agenda for Sustainable Development, the challenge for the Union is implementing the concept of inclusive sustainable development, whereby the EU policy, centred on the Green Deal, actively includes consideration of the rights of the disabled in a sustainable policy. This is also reflected in that part of the 2021–2030 Strategy that deals with its sound monitoring and reporting on implementation.39 The Commission’s framework for monitoring the implementation of this Strategy will also provide data for, inter alia, the implementation of the Sustainable Development Goals. The Commission has noted that quality data and long-term research are indispensable prerequisites to the effective monitoring of the progress of the Member States and the EU in this area.40

 Commission of the European Communities, Communication from the Commission to the European Parliament, The Council, The European Economic and Social Committee and the Committee of the Regions, Equal Opportunities for People with Disabilities: A European Action Plan, COM(2003)650, 30 October 2003. 36  European Commission, European Disability Strategy 2010–2020: A Renewed Commitment to a Barrier-Free Europe, Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, COM(2010)636, 15 November 2010 (‘European Disability Strategy 2010–2020’). 37  See Chap. 7 on participation by Camilla Ioli in this volume for a discussion of the 2017 interim assessment of the previous Strategy. The European Commission published its final evaluation of the previous strategy on 27 November 2020: European Commission, Evaluation of the European Disability Strategy 2010–2020, Commission Staff Working Document SWD(2020)289 final/2, 27 November 2020. 38  European Commission, Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030, Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, COM(2021)101, 3 March 2021 (‘European Disability Strategy 2021–2030’), at 30 (under 9 Awareness, Governance and Measuring Progress). 39  Ibid., at 28–29, para. 9.2. 40  Ibid. 35

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To that end, by 2023 at the latest, the Commission plans to develop ‘new disability indicators with a clear roadmap for implementation’,41 which… should include indicators for children and the situation of persons with disabilities in employment, education, social protection, poverty and social exclusion, living conditions, health, use of new communication technologies, supporting the indicators for the EU Social Scoreboard, the European Semester Sustainable Development Goals.42 There is a clear commitment to working on the structural reforms necessary to enable persons with disabilities to be full and active participants in the ‘transition to an inclusive, green and digital economy and society.’43 This is to be applauded; nevertheless, the challenge of effecting these reforms should not be underestimated.

9.4  Disability Rights in the EU Legal System 9.4.1  EU Institutions and Disability Rights As the previous discussion indicates, disability rights in the EU predate the accession of the EU and of its Member States to the CRPD. Nevertheless, having this instrument as the cornerstone of disability law and policy in the EU has undoubtedly strengthened the position of the Commission in developing a policy agenda in this area. Article 33 of the CRPD requires the Parties to designate one or more focal points within government for the implementation of the Convention, in accordance with their system. It also requires the parties to give due consideration to the establishment or designation of a coordination mechanism within government, aiming to facilitate relevant action. The provision further demands that the Parties establish a framework, including one or more independent mechanisms, to ‘promote, protect and monitor implementation’ of the Convention.44 The European Commission was initially both the focal point under CRPD Article 33(1) and part of the implementation mechanism for the CRPD under CRPD Article 33(2). However, in its 2015 concluding observations on the initial report of the EU under the CRPD,45 the Committee on the Rights of Persons with Disabilities (CteRPD) drew attention to this anomaly. Consequently, the Commission now only acts as a focal point. The implementation framework under CRPD Article 33(2) therefore currently only comprises the European Parliament, the European Ombudsman, the EU Agency for Fundamental Rights (FRA) and the European

 Ibid., emphasis added.  Ibid., at 29. 43  Ibid. 44  Seer Chap. 1 on sovereign entities and disability rights by Ottavio Quirico in this volume. 45  Committee on the Rights of Persons with Disabilities, Concluding Observations on the Initial Report of the European Union, UN Doc. CRPD/C/EU/CO/1, 2 October 2015. 41 42

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Disability Forum (EDF).46 Nonetheless, the Commission is the key institution in the implementation of the EU disability policy and is responsible for its very foundations. The Commission has indeed played a key role in the adoption of the 2010–2020 and 2021–2030 Strategies for the Rights of Persons with Disabilities.47 The 2010–2020 Strategy allowed the adoption of key regulatory instruments.48 For instance, in 2019, based on the initiative of the Commission, the European Parliament and the Council of the EU adopted the European Accessibility Act, a Directive that aims to remove differences in the legislation of the Member States to reduce barriers for people with disabilities within the internal market.49 In line with CRPD Article 9, the Directive is based on the principle that better accessibility to products and services, such as phones, transport and banking, will not only foster the participation of the disabled in society, but will also facilitate the expansion of businesses in the internal market. Building on the previous strategy, the new 2021–2030 Strategy acknowledges that, while progress has been made in developing disability policy across the EU, persons with disabilities continue to face considerable barriers in a range of areas.50 This is particularly the case in respect of access to healthcare services, education, employment and recreation activities.51 These citizens also continue to be hampered in participating in political life and, in comparison to people without disabilities, continue to be at a higher risk of poverty or social exclusion (28.4% compared with 18.4%).52 The Strategy aims to improve the lives of persons with disabilities not only within the EU but beyond.’53 However, given the distribution of legislative competence explained above, achieving the aims of the Strategy can only be done by coordinating action between the Member States and the EU institutions. It requires not only a commitment from Member State governments but also from regional and local authorities within and across the Member States.54 Whereas in areas such as transport and the internal market, legislative competence is shared between the EU and the Member States, in others such as education, health and culture, legislative competence rests primarily with the Member States and the EU has merely a supplementary role.55 Once this is clearly understood and  European Union Agency for Fundamental Rights, EU Framework for the UN Convention on the Rights of Persons with Disabilities (2020, Web Page) https://fra.europa.eu/en/cooperation/eu-­ partners/eu-crpd-framework. 47  See section 3 above. See also discussion of the Disability Platform in s 5.1 below. 48  On the 2010–2020 Strategy, see the discussion in Chap. 7 on participation by Camilla Ioli in this volume. 49  Directive (EU) 2019/882 of the European Parliament and of the Council of 17 April 2019 on the Accessibility Requirements for Products and Services [2019] OJ L 151/70. 50  European Commission, European Disability Strategy 2021–2030, at 5. 51  Ibid. 52  Ibid. 53  Ibid. 54  In respect of this, see further, Chap. 7 on participation by Camilla Ioli in this volume. 55  See TFEU Article 6 and section 2. 46

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acknowledged, the importance of the ‘soft law’ measures and regulatory approaches of the EU can be better appreciated. Multilevel governance, the open method of coordination, mutual recognition, mutual evaluation and the role of peer review are all essential to the realisation of the policy objectives of this new strategy.56 The EU is able to exercise influence and power through these soft law capillaries, supporting all Member States as they work to give effect to the obligations to which they have bound themselves both as signatories of the CRPD and as constituent members of the EU. As expressly noted in the Strategy, ‘it remains the primary responsibility of Member States to design their disability policies in line with their obligations to implement the UNCRPD’.57 That said, the fact that the EU per se is a signatory to the CRPD means that the Member States’ obligations under the CRPD are obligations as a matter of EU law as well as public international law. This, in turn, means that the Member States are subject to the discipline of the judicial order of the EU (of which their own courts and legal systems are an integral part).58 The European Court of Justice (ECJ) and the Court of Justice of the EU (CJEU)59 have adopted an important set of decisions over time to define the concept of disability.60 The courts will thus continue to play a key role in the development of disability rights in the EU. It is against the backdrop of this legal framework that the EU institutions and the Member States engage in the policy dialogue to recognise, protect and foster the rights of persons with disabilities not only within the EU but beyond.

 This is also true of other policy areas in relation to which the preponderance of legislative power rests with the Member States. 57  European Commission, Disability Strategy 2021–2030, at 5. 58  The EU is a legal system ‘founded on the values of respect for human dignity, freedom, democracy, equality, the rule of law and respect for human rights, including the right of persons belonging to minorities. These values are common the Member States in a society in which pluralism, nondiscrimination, tolerance, justice, solidarity and equality between women and men prevail.’ Article 2, TEU. 59  The term CJEU refers to the courts of the EU: the Court of Justice and the General Court (originally the Court of First Instance, established by Council Decision 88/91, adopted on 24 October 1988 [1989] OJ C215/1, under what is now mutatis mutandis, Article 257, TFEU). See further: https://europa.eu/european-union/about-eu/institutions-bodies/court-justice_en. The acronym ECJ is used in referring to one of the Courts of the CJEU: the Court of Justice. The EU also has a Civil Services Tribunal that was established by Council Decision 2004/752/EC, EURATOM, adopted on 2 November 2004 [2004] OJ L333/7, under what is now, mutatis mutandis, Article 257, TFEU. 60  See Silvia Favalli and Delia Ferri, ‘Tracing the Boundaries between Disability and Sickness in the European Union: Squaring the Circle?’ (2016) 23(1) Eur. J. Health Law 5. 56

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9.4.2  I nstitutional Structures in the Member States: A Case Study To deal comprehensively across all 27 Member States, with the different institutional structures to implement disability rights, is beyond the scope of this current contribution. The approach therefore adopted is to discuss in detail the arrangements in one Member State as an exemplar and point of reference. Complementing that discussion will be a brief treatment of the resources and tools available for use in carrying out similar studies for all other Member States. Germany was selected for detailed treatment as it is one of the most populous Member States, one of the largest economies in the EU and a federal State with a written constitution. EU Member States have in place different institutional structures to implement disability rights, particularly under the CRPD.61 For instance, with respect to CRPD Article 33(1), in Germany the focal point for the implementation of the CRPD is the Federal Ministry for Labour and Social Affairs (BMAS). Through a Working Committee, the Ministry consults with organisations representing persons with disabilities, thus ensuring participation under the CRPD. Germany has also established the Federal Government Commissioner for Matters relating to Persons with Disabilities as a coordination mechanism to raise awareness about the Convention, advise the federal government and facilitate cooperation with organisations of persons with disabilities. The Inclusion Committee has also been vested with advisory functions. It comprises a representative from the Ministry of Labour and Social Affairs; one from the Federal Government Commissioner for Matters relating to Disabled Persons; one from the State Commissioners for Matters relating to Disabled Persons; one from the German Institute for Human Rights, as well as the German representative to the UN Committee on the Rights of Persons with Disabilities; and 10 members of representative organisations. The 16 German Länder have further designated their own focal points, which vary; for example, the focal point for Berlin is the Senate Department for Integration, Labour and Social Issues, whilst the focal point for Hessen is the Ministry of Social Affairs, in cooperation with the Ministry of Culture Affairs. Local focal points interact with the federal focal point in implementing the CRPD. Concerning CRPD Article 33(2),62 in 2001 Germany designated the German Institute for Human Rights (GIHR) as the independent mechanism to promote, protect and monitor the implementation of the Convention. The Institute was recognised with A-Status by the Sub-Committee on Accreditation of the International

 See European Union Agency for Fundamental Rights, EU Framework (2020). See also, UN Office of the High Commissioner, Study on the Implementation of Article 33 of the UN Convention on the Right of Persons with Disabilities in Europe (Web Page) https://www.humanrights.go.kr/ site/inc/file/fileDownload?fileid=1056653&filename=1333615640064.pdf. 62  European Union Agency for Fundamental Rights, Opinion of the European Union Agency for Fundamental Rights concerning Requirements under Article 33(2) of the UN Convention on the Rights of Persons with Disabilities within the EU Context, Opinion 3/2016, 13 May 2016. 61

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Coordinating Committee, in compliance with the Paris Principles.63 It includes a Board of representatives of civil society organisations, academics and representatives of ministries. Concerning CRPD Article 33(3), the Federal Ministry for Labour and Social Affairs consults with civil society organisations and the German Disability Council. Furthermore, representative organisations participate in the Inclusion Committee. This analysis shows that Federal States, or States including a regional system of governance, benefit significantly from the designation of decentralised authorities for implementing the CRPD, because these are part of the administration and their action can trigger responsibility for both a Member State and the EU for failing to adequately implement the CRPD. EU Member States have adopted national strategies to implement the CRPD that are progressively reviewed and updated.64 The strategies of the Member States align with the general strategies adopted by the EU.65 In Germany, the Federal Ministry for Labour and Social Affairs (BMAS) adopted a National Action Plan to implement the CRPD.66 The Plan is a bundle of schemes for change. Thus, the Initiative for Training and Employment prompts relevant stakeholders to contribute to the inclusion of persons with disabilities in the labour market.67 The Inclusion Initiative is a joint policy of the federal government and Länder, in conjunction with the Federal Employment Agency, chambers of trade and industry, as well as integration offices and welfare agencies. It mobilises €100 million to tackle vocational orientation in schools, improving vocational orientation and expanding in-company training for juveniles with serious disabilities.68 The ‘Social Living’ umbrella programme established a budget of €3.85 million for the period 2010–2014 to address issues such as mobile counselling, technology-aided living and inclusive social areas.69 The EU Commission,70 the European Union Agency for Fundamental Rights (FRA) and the UN coordinate respectively a variety of online tools and resources providing information on efforts and measures at the national level. With these tools it is possible to investigate and assess the extent to which EU Member States are  National Institutions for the Promotion and Protection of Human Rights, GA Res. 48/134, UN GAOR, 48th sess., Agenda Item 114, UN Doc. A/RES/48/134, 20 December 1993. 64  UN Department of Economic and Social Affairs, Disability Strategies and Action Plans by Country/Area (Web Page) https://www.un.org/development/desa/disabilities/strategies.html. 65  Gauthier De Beco (ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities: National Structures for the Implementation and Monitoring of the Convention (Martinus Nijhoff Publishers, 2013); UNHCHR, Study on the Implementation of Article 33 of the UN Convention on the Rights of Persons with Disabilities in Europe, https://www.humanrights.go.kr. 66  UN Department of Economic and Social Affairs, Disability Strategies and Action Plans, Germany. 67  Ibid., at 6. 68  Ibid. 69  Ibid., at 7. 70  European Commission, DOTCOM: The Disability Online Tool of the Commission (Web Page, June 2019) https://ec.europa.eu/social/main.jsp?catId=1541&langId=en. 63

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implementing their obligations under the CPRD and in what ways. As noted above, Article 33(2) of the CPRD requires the Parties to the Convention to establish a framework to promote, protect and monitor implementation of the CRPD. The FRA is part of the EU Framework, established in 2013 for matters of EU competence. In addition to the FRA, the EU Framework comprises the European Parliament; the European Ombudsman; and the European Disability Forum (EDF). It complements the corresponding frameworks in the Member States. It remains to be seen how Member States will adapt their policies, in light of the new Disability Strategy adopted for the period 2020–2030.

9.5  B  uilding a Union of Equality: The EU Strategy for the Rights of Persons with Disabilities 2021–2030 Adopted by the Commission on 3 March 2021,71 the 2021–2030 Strategy ‘aims to ensure that people with disabilities can experience full social and economic inclusion on an equal basis with others and live free from discrimination.’72 It has the twin aims of giving effect to the CRPD and consolidating the EU’s body of law in this area. A closer examination of the Strategy reveals, as between the EU institutions and the Member States, the shift in the locus of competence to act, that can be mapped onto the competences discussed above.73 The Strategy opens with the Commission’s vision for a Union of Equality, drawing generally on the TFEU and the EUCFR combined with the CRPD. Integral to the development of policy in this area is also the European Pillar of Social Rights.74 This Pillar was jointly proclaimed in 2017 by the European Parliament, the Council and the European Commission: the Parliament represents all EU citizens directly; the Council represents the governments of the Member States (which may or may not also indirectly represent the interests of EU citizens); and the Commission represents the interests of the Union. Collectively these institutions represent the shared commitment of the EU and its constituent Member States to revise and renew social policy across Europe, guided by the twenty principles set out in the European Social Pillar Action Plan.75 Largely aspirational, the Pillar and its Action Plan nevertheless express a set of goals and aims against which progress in all areas of social policy reform can be evaluated and assessed. This includes, relevantly, disability law reform. Goals and aspirations at the EU level are a necessary but insufficient prerequisite for achieving real reform.

 World Hearing Day.  European Commission, Disability Strategy 2021–2030. 73  See section 2. 74   European Parliament, European Council and European Commission, Interinstitutional Proclamation on the European Pillar of Social Rights [2017] OJ C 428/09. 75  European Commission, The European Pillar of Social Rights Action Plan (Web Page, 4 March 2021) https://op.europa.eu/webpub/empl/european-pillar-of-social-rights/en. 71 72

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As the following discussion elucidates, in the area of social policy the commitment and political will of the Member States acting in their own sphere of competence is essential. The new Strategy builds on the 2010–2020 Strategy, both through targeted action and by ensuring that disability rights are taken into account across all EU policies, programmes and instruments.76 Consisting of nine sections, the Strategy moves from Vision (in section 1) through Accessibility (section 2) and Enjoying EU Rights (section 3) to addressing the right to a decent quality of life and living independently (section 4); equal access and non-discrimination (section 5); and promoting the rights of persons with disabilities globally (section 6). The remaining three sections are focused on delivering on the Strategy measures outlined in the preceding sections. Delivering on the Strategy (section 7) emphasises Better Regulation77, ‘stepping up’ cooperation between the EU institutions and the Member States;78 working with Member States, regional and local authorities; and using EU funding to support the implementation of the Strategy. Section 8 outlines the way in which the Commission will ‘lead by example’ through reforms to its selection, recruitment, employment and retention processes and improving accessibility of buildings and communication. The Strategy exhorts the other EU institutions, bodies and agencies to do the same.79 The final substantive part of the Strategy addresses awareness-­ raising, governance and measuring progress. There are six ‘Flagship initiatives’ in the Strategy accompanied by additional commitments of the Commission. As one moves through the parts of the Strategy, the locus of legislative competence and policy between the EU institutions and the Member States is readily discernible. Stripped of the aspirational language and positive tone inevitable in EU Commission documents, the six initiatives can be distilled in the following manner.

9.5.1  The Six Flagship Initiatives The detail of the six Flagship initiatives is set out in each of the sections of the Strategy, which concludes with a section addressed to strengthening the EU Framework under the UNCRPD.80

 European Commission, Disability Strategy 2010–2020.  Better Regulation is an agenda of the Commission directed to ensuring ‘evidence-based and transparent EU law-making based on the views of those that may be affected’: European Commission, Better Regulation: Why and How (Web Page) https://ec.europa.eu/info/law/lawmaking-process/planning-and-proposing-law/better-regulation-why-and-how_en. 78  European Commission, Disability Strategy 2021–2030, at para. 7.2. 79  Ibid., at 29. 80  European Commission, Disability Strategy 2021–2030, at 9 ff. 76 77

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9.5.1.1  Flagship 1: A European Resource Centre With this initiative, the Commission will launch a resource Centre, ‘AccessibleEU’ in 2022. The primary aim of this centre is to ‘increase coherence in accessibility policies and to facilitate access to relevant knowledge’81 It will establish a cooperation framework within which the national authorities responsible for implementing and enforcing accessibility rules will be brought together with experts and professionals.82 It is intended that such cooperation will inspire policy development at both Member State and EU levels. It will also develop tools and standards aimed at facilitating the implementation of EU law.83 This initiative creates a framework for cooperation and increased visibility of the efforts at the Member State level. 9.5.1.2  Flagship 2: A European Disability Card Under this initiative, the Commission will propose the creation of a European Disability Card by the end of 2023 with a view to it being recognised in all Member States.84 In respect of this initiative, the policy and legislative competence lies more squarely with the Member States than the EU institutions. Currently there is an EU Disability Card pilot project operating across eight Member States.85 This initiative will draw on that project together with experience gained from the European parking card for persons with disabilities. This proposal, while laudable, relies to a great degree on the cooperation, engagement and political will of the Member States. As the statistics show, however, people with disabilities are currently prevented from participating fully in the internal market and the Union society underpinned by that market.86 The responsibility for this situation lies with the Member States and the lack of political will under successive governments across the EU27 to act. The strength of proposing even aspirational initiatives such as a European Disability Card is that they show how rights could be given effect. This, in turn, makes it more difficult for governments to justify or explain their failure to act. 9.5.1.3  Flagship 3: Commission Recommendations to Member States The Commission, in the third flagship initiative, will issue guidance ‘recommending to Member States improvements on independent living and inclusion in the community’, in order to enable persons with disabilities to live in accessible,

 Ibid., at 8.  Ibid. 83  Ibid. 84  Ibid. 85  Belgium, Cyprus, Estonia, Finland, Italy, Malta, Romania and Slovenia. 86  See European Commission, Disability Strategy 2021–2030, at 10, para. 4. 81 82

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supported housing in the community, or to continue living at home (including personal assistance schemes).87 This guidance will be issued by 2023 and by 2024 the Commission will present a ‘specific framework for Social Services of Excellence for persons with disabilities.’88 This guidance will build on the Voluntary European Quality Framework for Social Services.89 9.5.1.4  Flagship 4: Commission’s Package to Improve the Labour Market In 2022, the Commission intends to present ‘a package to improve labour market outcomes of persons with disabilities.’90 To achieve this, the Commission will seek to cooperate with the European network of Public Employment Services as well as with social partners and organisations of persons with disabilities.91 This initiative is predominantly a ‘soft’ one, directed to supporting Member States and providing guidance through the European Semester.92 Such efforts will include supporting mutual learning between the Member States on strengthening capacities of employment and integration services and promoting hiring people with disabilities.93 The strength of this measure lies in its context: supporting and guiding Member States through the European Semester. The latter, introduced in 2010, establishes a framework within which the Member States, in cooperation with the EU institutions, coordinate their economic and social policies throughout the year, in six-month blocks (hence the term ‘semester’). Since its proclamation in 2017, the European Pillar of Social Rights has also been integrated into the European Semester.94 This is a further illustration of the blended sovereignty exercised in tandem by both the EU institutions and the Union’s constituent Member States.95 Policy coordination between the Member States is conducted within the framework of EU instruments and is thus subject to the disciplines and constraints of EU law.

 Ibid., at 12.  Ibid. 89  Ibid.; The Social Protection Committee, A Voluntary European Quality Framework for Social Services, Framework SPC/2010/10/8. 90  European Commission, Disability Strategy 2021–2030, at 14. 91  Ibid. 92  ‘The European Semester provides a framework for the coordination of economic policies across the European Union. It allows EU countries to discuss their economic and budget plans and monitor progress at specific times throughout the year’: European Commission, The European Semester (Web Page) https://ec.europa.eu/info/business-economy-euro/economic-and-fiscal-policy-coordination/eu-economic-governance-monitoring-prevention-correction/european-semester_en. 93  European Commission, Disability Strategy 2021–2030, at 14. 94  European Council, European Semester (Web Page, 12 May 2021) https://www.consilium.europa. eu/en/policies/european-semester. 95  Anne McNaughton, ‘Institutional Competence and the Common Foreign and Security Policy of the European Union’, in Hitoshi Nasu and Kim Rubenstein (eds.), Legal Perspectives on Security Institutions (Cambridge University Press, 2015) 73. 87 88

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9.5.1.5  Flagship 5: Establishing the Disability Platform In 2021, the Commission established the Disability Platform, replacing the High Level Group on Disability.96 This Platform will be integral to the implementation of the CRPD across the EU as it brings the Commission together with the national focal points for the CRPD and organisations of persons with disabilities.97 This initiative explicitly links the EU Strategy with the global efforts under the UNCRPD.  A key role in the implementation of the disability policy of the EU, within the context of the CRPD, is played by the Commissioner for Equality. Recently, the Commissioner has underscored the importance of strengthening the commitment of Europe to inclusion and equality in its policies, including disability.98 The Commissioner is convinced of the urgency of combined action by the EU and Member States, particularly in light of the EUCFR and TFEU, in order to implement the CRPD across the Union. Improving the social and economic situation of persons with disabilities, according to the Commissioner, entails not only the adoption of new laws, but also making existing laws more efficient. The Commissioner thus considers that recent legislation, such as the European Accessibility Act, must be implemented in a ‘correct, ambitious and coherent manner.’99 The Disability Platform should be a valuable resource within the governance structure monitoring the actions of the EU and Member States in this regard. 9.5.1.6  F  lagship 6: Adopting a Renewed Human Resources Strategy in the Commission This final Initiative sits well within the sphere of competence of the EU institutions combining as it does, a commitment from the Commission and an invitation to the inter-institutional European Personnel Selection Office (EPSO).100 For its part, the Commission ‘will adopt a renewed human resources (HR) strategy that will include actions to promote diversity and inclusion of persons with disabilities.’101 Under the initiative, the Commission invites the EPSO ‘to complement these efforts in collaboration with other recruiting EU institutions’.102 In this way, the EU institutions will lead by example. As applicants for positions across the EU institutions are EU citizens, this initiative ought also to have a reinforcing effect within Member States, encouraging similar reforms to HR strategies more broadly. This ought also to have

 European Commission, Disability Strategy 2021–2030, at 27.  Ibid. 98  Ursual von der Leyen, Commissioner for Equality, Mission Letter, 1 December 2019, at 4. 99  Helena Dalli, Answers to the European Parliament Questionnaire to the Commissioner-Designate Helena Dalli, Equality, at 11, http://www.europarl.europa.eu. 100  European Commission, Disability Strategy 2021–2030, at 29. 101  Ibid. 102  Ibid. 96 97

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implications for positive reform of structural obstacles currently encountered by people with disabilities at the Member State, regional and local levels to participate in the labour market. This initiative thus complements effectively the measures proposed under Flagship 4.

9.5.2  Evaluation of the Strategy Taken as a whole, the Strategy is a collection of soft law tools and governance strategies that frame the context in which the rights of people with disabilities across the Union can be given full effect. The Strategy is a powerful mechanism for the implementation of the CPRD but, as demonstrated above, depends heavily on the political will of the Member States. That said, the influence and soft power that can be exercised through the measures outlined in the Strategy should not be underestimated. When considered in the broader context of the European Semester and the European Pillar of Social Rights and recalling that the Member States themselves have conferred the requisite authority on the EU institutions, it can be seen that the Member States have, in fact, exercised that political will both as constituent parts of the EU and as signatories to the CRPD. As a matter of law, the question is not whether but how the Member States will give effect to their obligations under the CRPD and the EU Strategy.

9.6  T  he EU, Disability Rights and the Council of Europe System 9.6.1  The Council of Europe and Disability Rights Given that the Council of Europe fundamentally pursues a human rights mission, its different organs have played a vital role in the implementation of disability rights in Europe. This is the case of the Committee of Ministers, Parliamentary Assembly, Congress of Local and Regional Authorities, Council of Europe Development Bank, European Committee of Social Rights, European Court of Human Rights and Conference of the INGOs. EU Member States that are parties to the Council of Europe system are therefore compelled to implement the CRPD by following relevant developments. Notably, the Committee of Ministers of the Council of Europe adopted the 2017–2023 Disability Strategy.103 The Strategy builds on an evaluation of the

 Council of Europe, Human Rights: A Reality for All: Council of Europe Disability Strategy 2017–2023 (March 2017).

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implementation of the 2006–2015 Council of Europe Disability Action Plan104 in the Member States. The evaluation was encouraged by the Parliamentary Assembly via Recommendation 2064 (2015) and benefited from the participation of stakeholders such as experts from the public administration and academia. The Strategy is not binding but establishes authoritative guidance for Member States. Within the framework of the Sustainable Development Goals, the aim of the Disability Strategy 2017–2023 is to achieve inclusiveness by promoting equality, dignity and equal opportunities for persons with disabilities, in line with the CRPD, the European Convention on Human Rights (ECHR)105 and the European Social Charter (ESC).106 In order to achieve its purpose, the Strategy includes five priority areas: (1) equality and non-discrimination; (2) awareness raising; (3) accessibility; (4) equal recognition before the law; and (5) freedom from exploitation. This approach leads to supporting measures such as the promotion and development of affordable assistive technologies, devices and services for removing barriers.107 Concretely, the Strategy results in action such as the development of information campaigns by the Council of Europe and Member State institutions to outlaw stereotypes and discriminatory practices.108 Within the Council of Europe system, the European Court of Human Rights (ECtHR) has developed a significant jurisprudence in the matter of disability rights. Whilst the ECHR was adopted in the 1950s and therefore does not include specific disability rights, its provisions have helped significantly to develop such rights. For instance, in a decision of 2014 in the case of Center of Legal Resources on behalf of Valentin Câmpeanu v. Romania,109 the ECtHR dealt with the death of a person with mental disability in a psychiatric hospital. The Grand Chamber held the defendant State in breach of the right to life under ECHR Article 2, because medical institutions were not adequately equipped. According to the Court, Valentin Câmpeanu had been transferred between units without a proper diagnosis and appropriate treatment with antiretroviral medication; he had also been left with insufficient food, unreasonably putting his life in danger.110 The Court further upheld a breach of the right to an effective remedy under ECHR Article 13, because Romania failed to afford appropriate mechanisms for redress. Furthermore, the Court considered that Romania breached ECHR Article 46, concerning the binding force and execution of judgments, and recommended the adoption of necessary measures to ensure that  Council of Europe, Committee of Ministers, Council of Europe Action Plan to Promote the Rights and Full Participation of People with Disabilities in Society: Improving the Quality of Life of People with Disabilities in Europe 2006–2015, Doc. No. Rec(2006)5, 961st mtg., 5 April 2006. 105  Opened for signature 4 November 1950, entered into force 3 September 1953. 106  Opened for signature 18 October 1961, entered into force 26 February 1965. See Council of Europe, Human Rights: A Reality for All, at paras. 16–18. 107  Ibid., at para. 37. 108  Ibid., at para. 54. 109  Centre for Legal Resources on behalf of Valentin Câmpeanu v. Romania, ECtHR, Application n. 47848/08. 110  Id. [2014] V. Eur. Court. HR 1. 104

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mentally disabled persons in a comparable situation be provided with independent representation to have health and treatment complaints examined by an independent body. This jurisprudence has influenced the development of disability rights in the EU, because the EUCFR (Article 52(3)) establishes that its provisions must be interpreted according to the corresponding provisions of the ECHR.111

9.6.2  P  erspectives Disclosed by the Accession of the EU to the ECHR The EU system and the Council of Europe system are fundamentally aligned in the matter of disability. TEU Article 6(2) as amended by the Lisbon Treaty further provides that the EU will accede to the ECHR. Whilst in 2014 the CJEU provided a negative opinion112 on the Draft Accession Instrument prepared by the Steering Committee for Human Rights (CDDH),113 on 31 October 2019 the President and the First Vice-President of the European Commission co-signed a letter informing the Secretary General of the Council of Europe that the EU was ready to resume negotiations on accession to the ECHR. On 15 January 2020, negotiations were effectively resumed, with the 6th Meeting of the CDDH ad hoc negotiation group (‘47+1 Group’) on the accession of the EU to the ECHR taking place on 29 September 2020. It is reasonable to assume that accession of the EU to the ECHR will improve the influence of the ECHR on the EU regulatory system and facilitate the implementation of a more efficient and effective disability rights policy. Two fundamental considerations are important in this respect. First, by acceding to the ECHR, the EU will be directly responsible under the Convention; this means that the EU will be subject to the jurisdiction of the ECtHR in the case of a breach of the ECHR. As a consequence, States that are Members of both the EU and the ECHR will no longer be able to avoid responsibility in areas where they have transferred power to the EU under the EU founding Treaties, according to the Bosphorus doctrine.114 Second, notwithstanding the issue of accession, the CJEU and the ECtHR have each taken notice in a fundamental way of the decisions of the other although not without

 ‘In so far as this Charter contains rights which correspond to rights guaranteed by the Convention for the Protection of Human Rights and Fundamental Freedoms, the meaning and scope of those rights shall be the same as those laid down by the said Convention. This provision shall not prevent Union law providing more extensive protection.’ 112  Opinion Pursuant to Article 218(11) TFEU, CJEU, Opinion 2/13, 18 December 2014. 113  Steering Committee for Human Rights, Interim Report to the Committee of Ministers, for Information, on the Negotiations on the Accession of the European Union to the European Convention on Human Rights, Doc. CM(2013)93add1, 9 July 2013. 114  Bosphorus Hava Yollari Turizm ve Ticaret AS v. Minister for Transport, Energy and Communications, Ireland and the Attorney General, Case C-84/95 [1996] ECR I-3978, at para. 109. 111

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inconsistencies at times.115 Accession will establish a binding framework compelling the two courts to find a way to establish a consistent and coherent jurisprudence in the matter of disability rights. In the meantime however, as the discussion in this chapter of the EU system has demonstrated, the development of law and policy within the EU to give substantive effect to the rights of people with disabilities continues. Unquestionably, the fact that both the EU in its own right and the EU Member States individually are all signatories to the CRPD, has strengthened the Commission’s position in proposing both hard and soft law initiatives directed to giving effect to these obligations.

9.7  Conclusion Discussion in this chapter has focused predominantly on the legal order of the EU for the particular purpose of highlighting the challenges of policy development and legislative action where competence is shared across the EU institutions and the EU Member States. The purpose of that, in turn, is to highlight the significant responsibility that Member State governments have in this area. It serves no useful purpose for national governments to perpetuate the myth, that the EU institutions are capable of acting other than in accordance with the competences conferred on them by the Member States themselves. The political rhetoric of ‘blaming Brussels’, suggesting a centralisation of legislative power to Brussels at the expense of the Member States does a disservice to EU citizens, particularly those whose welfare is the subject of the UNCRPD and the EU Strategy. As noted earlier, the pace of reform and development in this policy area will depend on the political will of the Member State governments, not the EU institutions. That is why the ‘soft law and governance’ tools used in the EU to frame policy cooperation between the Member States has been highlighted in this contribution. These tools are essential for delivering on the latter’s obligations under the CRPD both as a matter of domestic and of EU law. Finally, discussion of the two different systems under the EU and the Council of Europe prepares the ground for further comparative analysis of the similarities and differences of achieving the goals of inclusivity, giving substantive effect to the rights of people with disabilities and affording citizens with disabilities full accessibility to and participation in the internal market and the society underpinned by that market. As noted at the start of this chapter and of this volume, the term ‘disabled’ has been used merely to conform with the language of the UNCRPD. It is regrettable that, in creating pathways to achieving inclusivity, diversity and full participation of differently-abled people in the society and political economy of the EU, the terminology of all measures in fact reinforces their ‘otherness’. The tenor of all the measures in the UNCRPD, the EU Framework and the Council of Europe

 See, for instance, Hoechst v. Commission [1989] ECR 2859, at para. 17; Chappell v. United Kingdom (1989) 12 EHRR 1, at paras 52 ff.

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system is to fulfil the goals of full inclusion of all people in society, respecting and accommodating everyone’s differences as well as their similarities. Regrettably, the terminology used (‘people with disabilities’ vs ‘differently abled people’) arguably works against these goals. It is to be hoped that, with time, the language will be adapted to align more appropriately with the aims of these measures.

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Cases Bosphorus Hava Yollari Turizm ve Ticaret AS v. Minister for Transport, Energy and Communications, Ireland and the Attorney General, Case C-84/95 [1996] ECR I-3978. Centre for Legal Resources on behalf of Valentin Câmpeanu v. Romania [2014] V. Eur. Court. HR 1. Commission of the European Communities v. Council of the European Communities [1971] ECR 263. Costa v. ENEL, Case C-6/64 [1964] ECR 585. Chappell v. United Kingdom (1989) 12 EHRR 1. Hoechst v. Commission [1989] ECR 2859. Van Gend en Loos v. Nederlandse Administratie der Belastingen, Case C-26/62 [1963] ECR 1.

Bibliography Barnard, C., & Peers, S. (Eds.). (2020). European Union law. Oxford University Press. Chalmers, D., Davies, G., & Monti, G. (2019). European Union law: Text and materials. Cambridge University Press. Craig, P., & De Búrca, G. (2020). EU Law: Text, cases, and materials. Oxford University Press. Craig, P., & De Búrca, G. (Eds.). (2021). The evolution of EU Law. Oxford University Press. De Beco, G. (Ed.). (2013). Article 33 of the UN Convention on the Rights of Persons with Disabilities: National structures for the implementation and monitoring of the convention. Martinus Nijhoff Publishers. Favalli, S., & Ferri, D. (2016). Tracing the boundaries between disability and sickness in the European Union: Squaring the circle? European Journal of Health Law, 23(1), 5. McNaughton, A. (2015). Institutional competence and the common foreign and security policy of the European Union. In H. Nasu & K. Rubenstein (Eds.), Legal perspectives on security institutions (p. 73). Cambridge University Press. Nasu, H., & Rubenstein, K. (Eds.). (2015). Legal perspectives on security institutions. Cambridge University Press. Pochet, P. (2020). Twenty years of the publication of “Social policy in the European Union”: What have we learned? In B.  Vanhercke et  al. (Eds.), Social policy in the European Union 1999–2019: The long and Winding Road (p. 13). European Trade Union Institute and European Social Observatory. Priestley, M., Waddington, L., & Bessozi, C. (2006). From rome to nice in a Wheelchair, The development of a european disability policy. Europa Law Publishing. Prpic, M. The open method of coordination, members’ research service, European Parliamentary Research Service, https://www.europarl.europa.eu/EPRS/EPRS-­AaG-­542142-­Open-­Method-­ of-­Coordination-­FINAL.pdf. Vanhercke, B., et al. (Eds.). (2020a). Social policy in the European Union 1999–2019: The long and winding road. European Trade Union Institute and European Social Observatory.

Chapter 10

The Need for a Comprehensive Overhaul of Disability Rights in the African Union Emmanuel Guematcha

Contents 10.1  I ntroduction 10.2  N  ormative Developments of the Rights of Persons with Disabilities in Binding African Treaties 10.2.1  Timid Developments before 2000 10.2.2  Normative Proliferation after 2000 10.2.3  The 2018 Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities 10.3  The Institutional Framework 10.3.1  Progressive Policy-Making by OAU and AU Organs 10.3.2  Uneven Adjudication: IAComHR, IACtHR and ACteERWC 10.4  State Implementation: An Effective Regulatory Framework? 10.5  Conclusion References

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Abstract  The history of people with disabilities in Africa discloses a high degree of complexity. Although the Organisation of African Union and the African Union (‘AU’) have made some progress, particularly via the adoption of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities, the concept of ‘different ability’ is far from being implemented effectively. At the State level, in addition to insufficient action, as concerns, for example, the right of access to work, there is a basic lack of consultation that leads to the adoption of inadequate policies. At the regional level, a comprehensive reform of disability rights should be carried out along the lines of the model provided by the AU Disability Architecture, possibly including the creation of an ad hoc disability rights body bringing coherence to scattered and dispersed measures.

E. Guematcha (*) University of French Guiana, Cayenne, French Guiana, France University Paris-Nanterre, Nanterre, France e-mail: [email protected]; [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_10

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Keywords  African Union · African States · Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities · Disability (different ability) policy-making · Adjudication

10.1  Introduction The history of people with disabilities, or, more properly, different abilities, in Africa is marked by beliefs and superstitions. For example, there are reports on the African continent of sending people with mental disabilities to prayer camps where they are expected to be spiritually purified after food deprivation.1 In some African cities, there are still many persons with disabilities begging in the streets, mixing with cars, motorbikes and bicycles which sometimes move at a frantic pace.2 The condition of people with disabilities is also marked in African States by the indifference of part of the population and the lack of concrete measures taken by many State authorities.3 In an effort to break the spiral of prejudice, superstitious beliefs and discrimination against persons with disabilities, and to foster full integration into society, the law has gradually emerged as a solution. At the United Nations (‘UN’), efforts led to the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2006.4 African States took part in this effort, as they participated in the process and many of them have ratified the CRPD.5 At the national level, States have also developed their own legal agenda on the rights of persons with disabilities. Some African States recognise the rights of persons with disabilities in their constitutions and make explicit provision for these rights. For example, the Constitution of Zambia prohibits discrimination against persons with disabilities,6 contains a definition of ‘disability’ and, among other values and principles, mentions the ‘representation of persons with disabilities in the composition of the public service at all levels’.7 In Mozambique, the Constituição da República enshrines the rights of ‘citizens with disability’ and their right to 1  Arlene S. Kanter, The Development of Disability Rights Under International Law. From Charity to Human Rights, (Routledge, 2015) at 67. 2  See, for example, Oche Onazi, An African Path to Disability. Justice Community, Relationships and Obligations (Springer, 2020) at 7–9. 3  Ibid. 4  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. 5  See UNTS, Convention on the Rights of Persons with Disabilities, https://treaties.un.org/Pages/ ViewDetails.aspx?src=TREATY&mtdsg_no=IV-15&chapter=4&clang=_en; Frans Viljoen and Japhet Biegon ‘The Feasibility and Desirability of an African Disability Rights Treaty: Further Norm-Elaboration or Firmer Norm-Implementation?’ (2014) 30(2) South African Journal on Human Rights 345, at 348-352; Louis O.  Oyaro, ‘Africa at Crossroads: The United Nations Convention on the Rights of Persons with Disabilities’ (2015) 30(2) American University International Law Review 347, at 360–361. 6  Constitution of Zambia (Amendment) Act, 2016, Article 259(1)(c). 7  Ibid., respectively, Article 266 and Article 173(1)(k).

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­special protection.8 The Constitution of the Fourth Republic of Ghana affords persons with disabilities with several rights, including the rights to participation and to be free from discrimination and exploitation.9 The Constitution of the Republic of Benin guarantees assistance to persons with disabilities,10 while in Senegal the State must ensure the mental and physical health of persons with disabilities.11 In addition to constitutions, many African States have adopted statutes to protect disability rights. For example, Zambia passed the Persons with Disability Act 2012, which has been amended to meet the requirements of the CRPD.12 Similar statutes protecting the rights of persons with disabilities are in force in Ghana,13 Mali,14 Benin,15 Algeria,16 and Rwanda.17 An important part of the effort of African States has unfolded at the regional level, through the continental organisation that unites them, the Organisation of African Unity (‘OAU’), which was created in 196318 and was later reconstituted as the African Union (‘AU’) in 2000.19 This contribution looks at how the OAU, and later the AU, have addressed the rights of persons with disabilities in Africa, considering critically what these regional organisations have done. The chapter is divided into three parts. The first part argues that the normative work of the OAU and AU has led to the emergence of Africa as a continent that fully recognises the rights of persons with disabilities in regional treaties. The second part shows that some organs and bodies of the OAU and AU have been on the frontline of the affirmation of the rights of persons with

 Constitution of Mozambique, 2004, Articles 37 and 125.  Constitution of Ghana, 1992, Article 29(1–8). 10  Constitution of the Republic Bénin, 1990 (Loi n. 2019-40 du 07 novembre 2019 portant révision de la loi n.° 90–32 du 11 décembre 1990), Article 29. 11  Constitution of Senégal, 2001 (Loi No. 2001-03 du 22 janvier 2001 portant constitution, modifiée), Article 17. 12  See, CteRPD, Initial Report Submitted by Zambia under Article 35 of the Convention, due in 2012, UN Doc. CRPD/C/ZMB/1, 19 October 2020. See for example, at para. 62. 13  CteRDP, Initial Report Submitted by Ghana under Article 35 of the Convention, Due in 2014, UN Doc. CRPD/C/GHA/1, 8 March 2019, at para. 19. 14  Loi n. 2018/027 du 12 June 2018 relative aux droits des personnes vivant avec un handicap, Journal officiel de la République du Mali, 18 June 2018, at 863–865. 15  Loi n. 2017.06 du 29 Septembre 2017 portant protection et promotion des droits des personnes handicapées en République du Bénin. 16  Loi n. 02–09 du 25 Safar 1423 correspondant au 8 mai 2002 relative à la protection et à la promotion des personnes handicapées, Journal officiel de la République algérienne No. 34, 14 May 2002. See also the Report of Algeria to the CteRDP and CteRPD, Consideration of Reports submitted by States Parties under Article 35 of the Convention. Initial Reports of States Parties Due in 2012: Algeria, UN Doc. CRPD/C/DZA/1, 2 November 2015, at para. 46. 17  Loi n. 01/2007 du 20/01/2007 portant protection des personnes handicapées en général, J.O n. spécial du 21 mai 2007. 18  Charter of the Organization of African Unity, opened for signature 25 May 1963, 479 UNTS 39, entered into force 13 September 1963. 19  Constitutive Act of the African Union, opened for signature 11 July 2000, 2158 UNTS 3, entered into force 26 May 2001. 8 9

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disabilities. The third part argues that the intense normative and institutional work of the OAU and AU in fact hides several limitations in terms of implementation, concrete achievements and general coherence.

10.2  N  ormative Developments of the Rights of Persons with Disabilities in Binding African Treaties In the shadow of the UN, the OAU (and later the AU) embarked in the recognition of the rights of persons with disabilities. African States were initially relatively timid before taking up the issue in the 2000s at a time when decisive negotiations led to the adoption of the CRPD in 2006. This normative contribution culminated in the adoption of a Protocol on the Rights of Persons with Disabilities in Africa.20

10.2.1  Timid Developments before 2000 In 1963, when the OAU Charter was adopted, the issue of the rights of persons with disabilities did not seem to be of great concern to African States. It was in the field of human rights that the OAU later took into account the rights of persons with disabilities. When African States moved towards the adoption of a treaty to guarantee human rights, they integrated, albeit very briefly, the rights of persons with disabilities. The African Charter on Human and Peoples’ Rights (‘ACHPR’) adopted in 1981 provides in its Article 18(4) that: ‘[e]lderly and disabled persons are also entitled to special measures of protection in accordance with their physical or moral needs’.21 The ACHPR thus affirms that persons with disabilities have special physical and moral needs that require specific measures of protection. This recognition of the rights of persons with disabilities in a binding and general international human rights convention was quite bold when the ACHPR was adopted. At the time, most general international human rights conventions, such as the American Convention on Human Rights,22 the European Convention on Human Rights23 and the UN covenants on both Civil and Political Rights and Economic, Social and Cultural Rights,24 did not mention explicitly the rights of persons with disabilities. The idea  Opened for signature 29 January 2018, entered into force 17 June 2020.  African Charter on Human and Peoples’ Rights (ACHPR), opened for signature 27 June 1981, 1520 UNTS 217, entered into force 21 October 1986. 22  Opened for signature 22 November 1969, 1144 UNTS 123, entered into force 18 July 1978. 23  Opened for signature 4 November 1950, 213 UNTS 221, entered into force 3 September 1953. 24  International Covenant on Civil and Political Rights, opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976; International Covenant on Economic, Social and Cultural Rights, opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. 20 21

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was that the rights of persons with disabilities could be implemented through the provisions of general human rights conventions, for example, via the prohibition of discrimination. What prevailed was the adoption of non-binding instruments, such as the 1975 UN Declaration on the Rights of Persons with Disabilities (‘UNDRPD’).25 Other non-binding declarations or texts also referred to the rights of people with disabilities.26 The 1961 European Social Charter (‘ESC’) recognised the rights for persons with disabilities explicitly.27 However, the ESC established a system of rights à la carte, whereby States were able to choose the provisions and rights they wished to implement,28 unlike the ACHPR, which compelled all State Parties to implement all of its provisions, including the rights of persons with disabilities. International regulation raises the question why African States decided to include the rights of persons with disabilities in a Charter that was established to recognise human and peoples’ rights. The OAU was certainly influenced by the evolution of disability rights within the UN. In addition to the 1975 UNDRPD, the UN also considered the rights of persons with disabilities in the years that followed. For example, in 1976, the UN General Assembly designated 1981 as the International Year of Disabled Persons.29 In 1978, the OAU Council of Ministers considered that the conditions of disabled persons should be improved and invited ‘all African countries to observe 1981 as the International Year of Disabled Persons’.30 In 1979, two years before the adoption of the ACHPR, the OAU Council of Ministers decided to ‘support the International Year of Disabled Persons and the efforts of the United Nations towards its success’.31 The International Year of Disabled Persons was set in 1981, when the OAU adopted the ACHPR as a regional treaty to protect human and peoples’ rights. In 1981, as the eighteenth session of the Assembly of Heads of State and Government of the OAU moved towards the adoption of the ACHPR, the OAU Council of Ministers also adopted a resolution on the rights of persons with disabilities which, among other things, created an ad hoc committee, requesting the assistance of the UNDP agencies and organisations to establish an African Regional Institute for the Treatment and Rehabilitation of Persons with Disabilities.32  Declaration on the Rights of Disabled Persons. UN GA Res. 3447 (XXX) of 9 December 1975.  See Declaration on the Rights of Mentally Retarded Persons, UN GA Res 2856 (XXVI) of 20 December 1971. Article 25, paragraph 1(1), of the Universal Declaration of Human Rights, UN GA Res. 217 A of 10 December 1948. 27  Article 15, European Social Charter, opened fro signature, 18 October 1961, 529 UNTS 89, entered into force 26 February 1961. 28  Article 20, ibid. 29  UN GA, Res. 31/123 of 16 December 1976; see also UN GA Res. 32/133 of 16 December 1977 and Res. 33/170 of 20 December 1978. 30  OAU, Resolution on the International Year of Disabled Persons, OAU Doc. CM/Res. 594 (XXX), 30th Ordinary Session, 20–28 February 1978. 31  OAU, Resolution on the International Year of Disabled Persons, OAU Doc. CM/Res. 724 (XXXIII) Rev. 1, Thirty-third Ordinary Session, 6 to 20 July 1979. 32  OAU, Resolution on Handicapped Persons, OAU Doc. CM/Res.875 (XXXVII), Thirty-seventh Ordinary Session, 15 to 26 June 1981. 25 26

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The review of the rights of persons with disabilities by OAU States continued in the 1990s with the adoption of a regional instrument containing several important provisions: Article 13 of the African Charter on the Rights and Welfare of the Child (‘ACRWC’) established specific rights for children with disabilities.33 According to this provision, children who are ‘mentally or physically disabled shall have the right to special measures of protection in keeping with their ‘physical and moral needs and under conditions which ensure’ their ‘dignity’, ‘promote’ their ‘self-reliance’ and ‘active participation in the community’.34 The same provision commits African States to making efforts to ensure the training and integration of persons with disabilities into the labour market, and to facilitate their free movement for accessing buildings and other places.35 In protecting the rights of children with disabilities, African States followed the 1989 UN Convention on the Rights of the Child,36 Article 23 of which was devoted to the rights of children with disabilities. In 1990, African States also adopted by acclamation the African Charter for Popular Participation in Development and Transformation, even if this was not a binding instrument.37 This charter called for the integration of persons with disabilities in the development process and created rights for persons with disabilities.38

10.2.2  Normative Proliferation after 2000 After 2000, prior to and following the adoption of the CRPD, African States have committed to adopting protective legislation for persons with disabilities. They have addressed the rights of persons with disabilities in segments of several treaties on other key issues. For example, Article 23 of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa addresses the rights of women with disabilities.39 It commits African States to taking measures to protect the dignity of women with disabilities, to safeguard them from violence, and to ensure their full integration in many sectors, such as employment and decision-­ making. Article 15 of the African Youth Charter guarantees access to employment for young people without discrimination, regardless of disability, while Article 16  African Charter on the Rights and Welfare of the Child, opened for signature 1st July 1990, entered into force 29 November 1999. 34  Ibid., Article 13(1). 35  Ibid., Article 13(2)–(3). 36  Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. 37  African Charter for Popular Participation in Development and Transformation, OAU Doc. A/ ECA/CM.16/11, February 1990. 38  Ibid., para. 23(B)(5). 39  Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa, opened for signature 7 November 2003, entered into force 25 November 2005. 33

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of the same Treaty, on health, obliges African States to ‘[p]rovide technical and financial support to build the institutional capacity of youth organisations to address public health concerns including issues concerning youth with disabilities’.40 Article 8(2) of the African Charter on Democracy, Elections and Governance emphasises the obligation of African States to guarantee the rights of persons with disabilities, and Article 43(2) commits the Parties to providing ‘free and compulsory basic education’ for persons with disabilities.41 In the context of forced displacement, Article 9(2)(c) of the AU Convention for the Protection and Assistance of Internally Displaced Persons in Africa (Kampala Convention) establishes that African States must protect and assist persons with disabilities.42 Article 13 of the 2018 Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Older Persons in Africa commits African States to taking measures to protect the rights of older persons with disabilities. To sum up, in addition to Article 18(4) of the ACHPR, which outlines general protection for all persons with disabilities, there are provisions implementing such rights in African regional treaties dealing with children, women, youth, displaced persons, the elderly, democracy, elections and governance. However, the milestone in the recognition of the rights of persons with disabilities in Africa is a treaty adopted in January 2018.

10.2.3  T  he 2018 Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities In an effort to recognise the specificity of the rights of persons with disabilities, African States committed to drafting a treaty devoted solely to these rights, along the lines of the approach taken by the UN. In 2018, as a result of the drafting process, African States adopted a Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities (‘PACHPRPD’).43 This legally binding instrument is the most comprehensive African treaty protecting the rights of persons with disabilities. It marked a major achievement of the AU in the field of disability rights and was the result of the efforts of several organisations,

 African Youth Charter, opened for signature 2 July 2006, entered into force 8 August 2009.  African Charter on Democracy, Elections and Governance, opened for signature 30 January 2007, entered into force 15 February 2012. 42  Opened for signature 23 October 2009, entered into force 6 December 2012. 43  Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities, 29 January 2018. 40 41

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including the Working Group on Older Persons and Persons with Disabilities within the African Commission on Human and Peoples’ Rights.44 The objective of the Protocol is ‘to promote, protect and ensure the full and equal enjoyment of all human and people’s rights by all persons with disabilities, and to ensure respect for their inherent dignity’.45 The PACHPRPD defines ‘persons with disabilities’ as a category that includes ‘those who have physical, mental, psycho-­ social, intellectual, neurological, developmental or other sensory impairments which in interaction with environmental, attitudinal or other barriers hinder their full and effective participation in society on an equal basis with others’.46 By relying on the word ‘include’, the Protocol leaves open the possibility of including other persons in the category of ‘disability’. This definition is somewhat similar to the 2006 CRPD.47 However, the inclusion of words like ‘environmental’ and ‘attitudinal’ adds specificity to the definition.48 African States that are parties to the PACHPRPD commit to taking various measures and protecting persons with disabilities from discrimination.49 The Protocol recognises several rights for people with disabilities. Although many of these rights are already enshrined in other international human rights treaties, by recognising them, the Protocol underlines their specificity when it comes to persons with disabilities. Notably, the PACHPRPD provides essential guarantees for the disabled, such as the rights to equality and equal recognition before the law (Articles 6 and 7); life (Article 8); liberty and security (Article 9); access to justice (Article 13); accessibility (Article 15); education (Article 16); health (Article 17); and work (Article 19). The Protocol also protects specific categories of persons with disabilities, addressing vulnerable groups via provisions on women and girls (Article 27), children (Article 28), youth (Article 29), and the elderly (Article 30).

 On the Working Group, see AComHPR, Resolution 143 on the Transformation of the Focal Point on the Rights of Older Persons in Africa into a Working Group on the Rights of Older Persons and Persons with Disabilities in Africa, ACHPR/Res.143(XXXXV)09, 45th Ordinary Session, Banjul, The Gambia, May 2009. On the implication of organisations in the drafting process, see Kwadwo Appiagyei-Atua, ‘A Comparative Analysis of the United Nations Convention on the Rights of Persons with Disability and the African Draft Protocol on the Rights of Persons with Disabilities’ (2017) 21 Law Democracy & Development 153, at 159. 45  Protocol to the African Charter on Human and Peoples Rights on the Rights of Persons with Disabilities, Article 2. 46  Ibid., Article 1. 47  Article 1 of the UN CRPD: ‘[p]ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’. 48  See Lilian Chenwi, ‘Protection of the Economic, Social and Cultural Rights of Older Persons and Persons with Disabilities in the African Regional System’, in Danwood Mzikenge Chirwa and Lilian Chenwi (eds), The Protection of Economic, Social and Cultural Rights in Africa: International, Regional and National Perspectives (Cambridge University Press, 2016) 180, at 182. 49  Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities, Articles 4 and 5. 44

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The 2018 PACHPRPD is close to the 2006 CRPD in many respects, with particular regard being had to the rights of the disabled and to State obligations. However, there are differences in wording, the addition of certain elements as concerns protected rights and the consideration of vulnerable categories of people, such as young people.50 A key difference is that the Protocol provides that persons with disabilities have duties on the same footing as other persons, which entails for African States an obligation to take measures to assist and support the disabled in the fulfilment of their obligations,51 along the lines of the ACHPR.

10.3  The Institutional Framework 10.3.1  Progressive Policy-Making by OAU and AU Organs The OAU/AU contribution to the rights of persons with disabilities is not limited to treaties and binding documents. OAU and AU organs have indeed adopted numerous policy documents aimed at providing African States with guidelines and improving the rights of persons with disabilities. There is therefore no doubt that the OAU/AU has taken multidimensional initiatives to protect the rights of persons with disabilities in Africa. The OAU Assembly of Heads of State and Government declared 1999–2009 a ‘Decade of Persons with Disabilities’ and adopted the Continental Plan of Action for the African Decade of Persons with Disabilities to be implemented during the Decade.52 This document was drawn up to guide African States ‘in the formulation of national programmes on disability issues’ in order to put in place mechanisms to achieve the objectives of the Decade,53 including the taking of actions and measures to improve the status of persons with disabilities in Africa.54 Later on, the first AU Conference of Ministers of Social Development extended the Decade, via a Continental Plan of Action for the African Decade of Persons with Disabilities for the period 2010–2019, with similar objectives.55 Anticipating the end of the Decade,

 For more details, see Lilian Chenwi, ‘Protection of the Economic, Social and Cultural Rights’ (2016). For a comparison, see Kwadwo Appiagyei-Atua, ‘A Comparative Analysis’ (2017). 51  Ibid., Article 31. The UN 2006 CRPD refers to duties of individuals in its Preamble (w). 52  OAU Assembly of Heads of State and Government, Continental Plan of Action for the African Decade of Persons with Disabilities (1999–2009), July 1999. 53  Ibid., Preamble. 54  Ibid., at 5–6. 55  African Union Commission, Department of Social Affairs, Continental Plan of Action for the African Decade of Persons with Disabilities 2010-2019, 2012, at 9–10. 50

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in April 2019, an AU Committee adopted the African Union Strategic Framework for Persons with Disabilities,56 which replaced the 2010–2019 Continental Plan.57 In 2013, the AU Conference of Ministers for Social Development adopted the African Union Architecture for Persons with Disabilities,58 which includes ‘[l]egal, Programme and Institutional components aimed at accelerating the full participation, equality and empowerment of people with disabilities in Africa’.59 The development of the rights of persons with disabilities in the continent has shaped the Architecture, which now includes three pillars, notably, the 2018 PACHPRPD; a ‘Programmatic Pillar’, that is, the Continental Plan of Action for the African Decade of Persons with Disabilities, which was replaced by the AU Strategic Framework for Persons with Disabilities in 2020; and an ‘Institutional Pillar’, that is, the African Union Institute for Persons with Disabilities.60 In order to guide African States in the implementation of the 2018 Protocol on the Rights of Persons with Disabilities, the Pan-African Parliament adopted a Model Law on Disability in 2019.61 The Pan-African Parliament includes a Committee on Gender, Family, Youths and People with Disabilities, which intervenes on issues related to persons with disabilities.62 In 2020, the AU further adopted a Disability Inclusion Guideline for Youth Exchange. This policy document aims at supporting ‘hosting and sending organizations working in the field of youth exchange and youth mobility programs in their efforts to be more inclusive for youth with disabilities by putting in place necessary support measures’.63 The document provides guidelines for, among other issues, recruiting young people with disabilities and paying attention to their inclusion.64 In addition to these policy documents, numerous Declarations of the OAU and the AU include references to the rights of persons with disabilities. For example, in 1999 the first OAU Ministerial Conference on Human Rights adopted a Declaration and Plan of Action, urging the African States to respect the rights of persons with disabilities.65 In 2003, it was the turn of the first AU Ministerial Conference on Human Rights to adopt the Kigali Declaration, which called on African States to  AU, Directorate of Information and Communication, AU Commission Hosts Opening Ceremony of the 7th African Forum on Visual Impairment, Press Release n. 145 /2019, 7 October 2019. 57  Seventh African Forum on Visual Impairment, Briefing Note, Addis Ababa, Ethiopia, 7 October 2019, para 1(b). 58  AU, Decision on the Report of the Third Session of the Assembly of Ministers of Social Development of the African Union, EX.CL/Dec.750(XXII), 21–25 January 2013, at para 2(i). 59  Ibid. 60  Seventh African Forum on Visual Impairment, Briefing Note (2019) para. 1(b). 61  Resolution Establishing the Adoption of the Model Law on Disability in Africa, Doc. PAP.5/ PLN/RES/1/OCT.19, 2019. 62  See the website of the Pan-African Parliament: http://www.panafricanparliament.org/index.php/ committees. 63  AU Directive on the Inclusion of People with Disabilities in Youth Exchanges, 2020, at 5. 64  Ibid., at 17–56. 65  OAU, Grand Bay (Mauritius) Declaration and Plan of Action, 16 April 1999, at para. 7. 56

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develop the Protocol on the protection of the rights of persons with disabilities and to respect the rights of persons with disabilities in situations of armed conflicts.66

10.3.2  U  neven Adjudication: IAComHR, IACtHR and ACteERWC The AU has enormous potential to improve the status and rights of persons with disabilities on the continent via human rights enforcement institutions. It indeed includes specific bodies charged with monitoring the compliance of African States with human rights treaties, notably, the African Commission on Human and Peoples’ Rights (‘AComHPR’), the African Court on Human and Peoples’ Rights (‘ACtHPR’), and the African Committee of Experts on the Rights and Welfare of the Child (‘ACteERWC’). The AComHPR is a body created by the ACHPR to protect and promote human and peoples’ rights in Africa and has been the most active in addressing the rights of persons with disabilities.67 To this end, the Commission relies on the ACHPR and ‘draw[s] inspiration from international law on human rights’ including other instruments adopted by African States in the field of human and peoples’ rights.68 This clearly signifies that the AComHPR can go beyond the 1981 ACHPR to promote and protect human rights in Africa. Thus, with regard to the protection of the rights of persons with disabilities in Africa, the Commission monitors compliance by African States with the ACHPR, but can also ‘draw inspiration’ from other African treaties including provisions relevant to the rights of persons with disabilities and the CRPD, which most African countries have ratified. Curiously, despite intense normative developments on the rights of persons with disabilities within the OAU and the AU, only in one case has the AComHPR found violations of the rights of persons with disabilities. In Purohit and Moore v. The Gambia, the Commission found Gambia in violation of ACHPR Article 18(4), in combination with Article 16, on the right to health, owing, inter alia, to a lack of effective provisions facilitating therapeutic care for persons with mental disabilities.69 The Commission thus urged Gambia to replace the Lunatics Detention Act 1917,70 a piece of legislation that had no clear therapeutic objectives71 and branded persons with mental illness as ‘lunatics’.72

 OAU, Kigali Declaration, 8 May 2003, at paras 17 and 20.  ACHPR, Article 30. 68  Ibid., Article 60. 69  AcomHPR, Purohit and Moore v. The Gambia, Communication No. 241/01, May 2003, at para. 83. 70  Ibid., at para. 85 (a). 71  Ibid., at para. 83. 72  Ibid., at para. 59. 66 67

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More generally, the AComHPR has played an important role in promoting the rights of persons with disabilities via general comments on specific provisions of the ACHPR and its protocols. These comments stress the specificity of the rights of persons with disabilities and the need for their implementation in the context of the application of relevant provisions.73 The AComHPR has also adopted Principles and Guidelines that underscore the need to respect the economic, social and cultural rights of persons with disabilities.74 Furthermore, the Commission has requested that African States provide information in their periodic reports on the measures taken under human rights instruments to address the needs and rights of persons with disabilities.75 In fact, segments of recent national reports by African States are devoted specifically to disability; for example, in its latest report, Niger detailed various actions in favour of persons with disabilities.76 These include the adoption of a classification of persons with disabilities as a vulnerable group in 2018,77 support to associations working for the promotion of persons with disabilities, the strengthening of community rehabilitation programmes, the consolidation of the implementation of the CRPD,78 and the organisation of events and participation in initiatives related to the protection of persons with disabilities.79 The periodic report of Malawi presents national statistics on persons with disabilities, legislation protecting the disabled, as well as actions and measures envisaged to enhance the efficacy of their rights, such as the establishment of a disability-specific trust fund by

 See, for instance, AcomHPR, General Comment No. 4 on the African Charter on Human and Peoples’ Rights: The Right to Reparation for Victims of Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (Article 5), 4 March 2017, at paras 19, 22, 38 and 59; AcomHPR, General Comment No. 3 on the African Charter on Human and Peoples’ Rights: The Right to Life (Article 4), 12 December 2015, at para. 25; AcomHPR, General Comment No. 2 on Article 14(1)(a), (b), (c) and (f) and Article 14(2)(a) and (c) of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa, 28 November 2014, at paras 3, 19, 28(d), 29, 38, 43, 47, 53 and 61; AcomHPR, General Comments on Article 14(1) (d) and (e) of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa, 6 November 2012, at paras 4 and 15. 74  AcomHPR, Principles and Guidelines on the Implementation of Economic, Social and Cultural Rights in the African Charter on Human and Peoples’ Rights, 2010, including numerous references to the economic, social and cultural rights of persons with disabilities. See also AcomHPR, Guidelines on the Right to Water in Africa, 2019, at para. 24. 75  AcomHPR, Guidelines for National Periodic Reports, 14 April 1989, at paras 29 (f) and 47 (a); AcomHPR, State Party Reporting Guidelines for Economic, Social and Cultural Rights in the African Charter on Human and Peoples’ Rights (Tunis Reporting Guidelines), 24 October 2011, at para. 7, C. Right to Health, viii(c). 76  Fifteenth (15th ) Periodic Report of the Republic of Niger on the implementation of the African Charter on Human and Peoples’ Rights covering the period 2017–2019, submitted under Article 62 of the said Charter, November 2019. 77  Ibid., at para. 291. 78  Ibid., at para. 289. 79  Ibid., at paras 292–315. 73

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2022.80 The periodic report of Cameroon provides information on legislation and action taken to facilitate the access of persons with disabilities to housing, infrastructure, transport, politics, sport, recreation, art and culture.81 In its concluding observations on State periodic reports, the AComHPR has included incisive recommendations to States on the rights of persons with disabilities. For example, in 2012 the Commission recommended that Angola strengthen public policy services, programmes and projects that aim to ensure protection for the rights of the disabled.82 With regard to Kenya, the Commission called for the establishment of a cash transfer programme for people with severe disabilities, aiming to cushion poverty amongst the disabled community there.83 The AComHPR has also established a specialised internal body to advance the rights of people with disabilities. In 2009, the Commission decided to transform the Focal Point on the Rights of Older Persons in Africa, which had been established in 2007,84 into a Working Group on the Rights of Older Persons and Persons with Disabilities in Africa.85 This transformation marked an important step in promoting the rights of people with disabilities in the work of the Commission, bringing them together with those of a key vulnerable group, which includes a high number of disabled persons. The Working Group was mandated to collect data, develop comparative research and draft a Concept Paper for consideration by the Commission, providing a basis for the adoption of a Draft Protocol on Ageing and People with Disabilities.86 The Committee reports on its work at the ordinary sessions of the Commission.87 Apart from the key role it played in drafting the 2018 PACHPRPD, the Working Group has consistently highlighted the problems faced by persons with disabilities in the continent, insisting on the need to respect their rights and urging African States to ratify the 2018 Protocol.88

 Periodic Report of the Republic of Malawi on the African Charter on Human and Peoples’ Rights and the Maputo Protocol, May 2015 to March 2019, at paras 203–207. 81  Single Report Comprising the 4th, 5th and 6th Periodic Reports of Cameroon relating to the African Charter on Human and Peoples’ Rights and the 1st Reports relating to the Maputo Protocol and the Kampala Convention, 2019, at paras 515–523. 82  AcomHPR, Twelfth Extraordinary Session 30 July–4 August 2012, Algiers, Algeria. Concluding Observations on the Combined 2nd, 3rd, 4th and 5th Periodic Reports (2nd, 3rd, 4th and 5th) of the Republic of Angola, 2012, at para. 41 (XXIV). 83  AcomHPR, Concluding Observations and Recommendations on the 8th to 11th Periodic Report of the Republic of Kenya, 2016, at para. 20(ii). 84  AComHPR, Resolution on the Establishment and Appointment of a Focal Point on the Rights of Older Persons in Africa, Doc. ACHPR/Res.118(XXXXII)07, 42nd Ordinary Session, November 2007. 85  AComHPR, Resolution 143 (2009). 86  Ibid., at (ii)–(iv). 87  Ibid., at (vi). 88  See, for example, the Declaration of the Working Group on the Rights of Older Persons and Persons with Disabilities in Africa of the African Commission on Human and Peoples’ Rights on the Occasion of the International Day of Persons with Disabilities, 3 December 2020. 80

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Besides the AComHPR, the African Committee of Experts on the Rights and Welfare of the Child (‘ACteERWC’) is a body established by the ACRWC ‘to promote and protect the rights and welfare of the child’.89 This Committee has not substantively addressed the rights of persons with disabilities in its decisions. However, like the AComHPR, the ACteERWC has devoted part of its work to promoting the rights of children with disabilities. It has done so in general comments regarding the ACRWC or by recourse to certain provisions of the Charter. Indeed, in its General Comment on ’Children in Situations of Armed Conflict‘, the Committee argued that States must put in place laws and policies to enable children to participate in deciding relevant matters, emphasising the situation of ‘children from vulnerable contexts including those with disabilities’.90 In its General Comment on State obligations, the Committee considered that special measures must be put in place to protect children with disabilities.91 In its General Comment on Article 6 of the ACRWC, which recognises the right to a name and nationality, the Committee devoted a detailed analysis to children with disabilities.92 The Comment stresses that children with disabilities must be registered by States and that they lose opportunities, when not registered;93 consequently, the Comment calls upon States to take measures to facilitate the registration of ‘children born to parents with disabilities‘.94 After examination of the periodic reports of African States, the Committee has also made recommendations to strengthen the rights of children with disabilities in Africa.95 The ACtHPR, which was created in 1998,96 has yet to address the rights of persons with disabilities in Africa. In 2014, Tanzania recognised the right of persons

 African Charter on the Rights and Welfare of the Child, Article 32.  ACteERWC (African Committee of Experts on the Rights and Welfare of the Child), General Comment on Article 22 of the ACRWC: ‘Children in Situations of Conflict’, September 2020, at para. 32. 91  ACteERWC, General Comment No. 5 on ‘State Party Obligations under the African Charter on the Rights and Welfare of the Child (Article 1) and Systems Strengthening for Child Protection’ (2018) at 23. 92  ACteERWC, General Comment on Article 6 of the African Charter on the Rights and Welfare of the Child: ‘Right to Registration of Birth, Name and Nationality’ (2014) at paras 52-56. 93  Ibid., at paras 52–54. 94  Ibid., at para. 56. 95  See for example, ACteERWC, Observations finales et recommandations du Comité Africain d’experts sur les droits et le bien-être de l’enfant sur le rapport initial de la République Islamique de Mauritanie sur la mise en œuvre de la Charte africaine sur les droits et le bien-être de l’enfant, 2019, at paras 56–58; Id., Concluding Observations and Recommendations of the African Committee of Experts on the Rights and Welfare of the Child on the Initial Report of the Republic of Angola on the Status of the Implementation of the African Charter on the Rights and Welfare of the Child, 2017, at paras 12, 27 and 39; Id., Concluding Observations and Recommendations by the African Committee of Experts on the Rights and Welfare of the Child on the People’s Democratic Republic of Algeria Report on the Status of Implementation of the African Charter on the Rights and Welfare of the Child, 2015, at paras 28 and 34. 96  Protocol to the African Charter on Human and Peoples’ Rights on the Establishment of an African Court on Human and Peoples’ Rights, opened for signature 10 June 1998, entered into force 25 January 2004. 89 90

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under its jurisdiction to file a complaint with the ACtHPR, a right that was later revoked in 2019.97 Surprisingly, rather than acting in the ACtHPR, in 2014, p­ laintiffs complained of disability rights violations by Tanzania in the CteRPD,98 which led to a condemnation of Tanzania for a breach of the rights of persons with albinism.99 The decision to refer the case to the CteRPD might have been influenced by the limited recognition of the rights of persons with disabilities under the ACHPR: the 2018 Protocol had not yet been adopted when the complaints were filed and perhaps the complainants assumed that the decision of the CteRPD had ‘teeth’.100 However, because it is charged with the protection of human and peoples’ rights in Africa, the Court has the potential to rule on the violation of these rights and develop a significant jurisprudence.101 It can thus be expected that more complaints will be brought to the attention of the ACtHPR in the coming years.

10.4  State Implementation: An Effective Regulatory Framework? In light of the numerous OAU and AU texts and initiatives on disability rights, one would expect a full and effective realisation and fulfilment of the rights of persons with disabilities on the African continent. However, it is common knowledge that this is not the case. The AU and African States face multiple problems in improving the rights and status of the disabled. The PACHPRPD has not yet entered into force owing to insufficient ratifications, although this can be expected to happen soon, as Article 38 requires fifteen ratifications for effectiveness and nine countries have already signed the Protocol.102 Furthermore, despite the adoption of several regional

 Tanzania, Notice of Withdrawal of the Declaration Made under Article 34(6) of the Protocol to the African Charter on the Establishment of an African Court on Human and Peoples’ Rights, 14 November 2019. 98  CteRPD, Y v United Republic of Tanzania, Communication No. 23/2014, 31 August 2018, UN Doc. CRPD/C/20/D/23/2014; CRPD, Y v United Republic of Tanzania, Communication No. 22/2014, 18 August 2017, UN Doc. CRPD/C/18/D/22/2014. 99  Ibid., at para. 9 of both decisions. 100  Even if there is no clear evidence in this case, one could add ignorance of the existence of African human rights bodies. Japhet Biegon considered in 2011 that persons with disabilities have not always been aware of the existence of the Commission on Human and Peoples’ Rights and that it was only recently that they begun to participate in the work of the Commission (see Japhet Biegon, ‘The Promotion and Protection of Disability Rights in the African Human Rights System’, in Ilze Grobbelaar-du Plessis and Tobias van Reenen (eds.), Aspects of Disability Law in Africa (Pretoria University Press, 2011) 53, at 71). 101  See Andrea Broderick, and Delia Ferri, International and European Disability Law and Policy: Text, Cases and Materials (Cambridge University Press, 2019) at 534–535. 102  AU, PACHPRPD, https://au.int/en/treaties/protocol-african-charter-human-and-peoples-rightsrights-persons-disabilities-africa. 97

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legal instruments, policies and strategies, key issues still hamper the fulfilment of the rights of persons with disabilities in Africa. It is not always easy to find official information on the concrete measures taken by African States to give effect to legal instruments and policies adopted at the regional or international level for the protection of persons with disabilities. Nonetheless, an examination of reports submitted to international bodies and of the following concluding observations provides indications on measures taken and their shortcomings. In particular, national reports submitted to the CteRPD and the AComHPR, as well as the concluding observations of these bodies, are quite instructive on the problems affecting the implementation of the rights of persons with disabilities in Africa, as they include a critique of State measures and policies adopted to implement such rights. Notably, some African States have established specific national bodies to deal with disability issues. This is the case of Liberia, which instituted a National Commission on Disability.103 Burkina Faso set up several bodies to deal with disability rights, including the State Secretariat for Social Affairs, Persons with Disabilities and Social Inclusion; the National Multisectoral Council for the Protection and Promotion of the Rights of Persons with Disabilities and its Permanent Secretariat; the Directorate for the Protection and Advancement of Persons with Disabilities; and the Directorate for the Promotion of Inclusive Education, Girls’ Education and Gender.104 Ghana established a National Council on Persons with Disabilities and devolved the implementation of disability policies to other institutions.105 Along the same lines, Rwanda set up a National Council for Persons with Disabilities, which is responsible, inter alia, for ensuring respect for the rights of persons with disabilities as guaranteed by Rwandan law.106 Several African States have adopted a variety of policies, ranging from measures to combat discrimination to action promoting the full integration of persons with disabilities into society. For example, Ghana adopted targeted policies and strategies to protect and promote the rights of persons with disabilities, including a

 AcomHPR, General Report on the Human Rights Situation in Liberia, September 2012, para. 96; CteRPD, Initial Report submitted by Liberia under Article 35 of the Convention, due in 2014, UN Doc. CRPD/C/LBR/1, 24 April 2020, at para. 15. 104  CteRDP, Initial report submitted by Burkina Faso under article 35 of the Convention, due in 2011, UN Doc. CRPD/C/BFA/1, 23 April 2020, at para. 12; See also, AComHPR, Periodic Report of Burkina Faso within the Framework of the Implementation of Article 62 of the African Charter on Human and Peoples’ Rights, January 2015, at para. 272. 105  CteRDP, Initial Report submitted by Ghana (2014) at para. 31. 106  AComHPR, The Elevnth, Twelfth and Thirteenth Periodic Reports of the Republic of Rwanda on the Implementation Status of the African Charter on Human and Peoples’ Rights and the Initial Report on the Implementation Status of the Protocol to the African Charter on Human and People’s Rights and the Rights of Women in Africa (Maputo Protocol), 2009–2016, at para. 18; CteRPD, Consideration of Reports Submitted by States Parties under Article 35 of the Convention, Initial Reports of State Parties Due in 2011: Rwanda, UN Doc. CRPD/C/RWA/1, 23 October 2015, at para. 27. 103

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National Disabilities Plan,107 a Child and Family Welfare Policy, a National Disability Policy and a Disability Common Fund Policy.108 Benin has implemented a National Policy for the Protection and Integration of Persons with Disabilities for the periods 2007–2016 and 2012–2021.109 In 2012, South Africa put in place a National Development Plan, which underscores a link between disability and poverty, as they influence one another, so that addressing disability issues is seen as critical to fighting poverty.110 South Africa put in place policies that guarantee free health care and disability rights.111 Rwanda adopted ministerial orders ‘relating to the measures to facilitate Persons with Disabilities in communication, travel, education, sport and leisure, medical care, and employment’.112 All these elements emerging from State reports signify that, in Africa, there is overlap between regional initiatives within the OAU, AU and national initiatives which are likely to be further fuelled by international developments, including those under the CRPD. However, these developments alone do not necessarily mean that the rights of persons with disabilities have been concretely implemented. Notably, international bodies have found that national laws and measures protecting the rights of persons with disabilities are not particularly effective. The CteRPD recommended that African States implement legislation or policies to protect, or give effect to, the rights of persons with disabilities via either general legislation113 or specific measures relating to employment, accessibility (including transport and buildings)114 and access to education.115 More generally, the CteRPD has emphasised the need for a more efficient implementation of the CRPD by African States.116

 CRDP, Initial Report Submitted by Ghana (2014) at para. 23.  Ibid., at para. 30. 109  CteRDP, Initial Report Submitted by Benin under Article 35 of the Convention, due in 2014, UN Doc. CRPD/C/BEN/1, 7 March 2019, at para. 23; see also, AcomHPR, Rapport périodique combiné du Benin (2009–2018) sur la mise en œuvre de la Charte africaine des droits de l’homme et des peuples (CADHP), February 2019, at 58. 110  CRDP, Consideration of Reports Submitted by States Parties under Article 35 of the Convention, Initial Reports of State Parties, Due in 2009: South Africa, CRPD/C/ZAF/1, 21 November 2015, at paras 3–8. 111  AComHPR, South Africa, Combined Second Periodic Report under the African Charter on Human and Peoples’ Rights and Initial Report under the Protocol to the African Charter on the Rights of Women in Africa, August 2015, at para. 445. 112  CteRPD, Consideration of reports submitted by States: Rwanda (2007) at 23. 113  CteRPD, Concluding Observations on the Initial report of Rwanda, UN Doc. CRPD/C/RWA/ CO/1, 3 May 2019, at para. 6. 114  CteRPD, Concluding Observations on the Initial Report of Uganda, UN Doc. CRPD/C/UGA/ CO/1, 12 May 2016, at paras 16 (b) and 17; CteRPD, Concluding Observations on the Initial Report of Gabon, UN Doc. CRPD/C/GAB/CO/1, 2 October 2015, at paras 22-23; CteRPD, Concluding Observations on the Initial Report of Kenya, UN Doc. CRPD/C/KEN/CO/1, 30 September 2015, at paras 17–18. 115  CteRPD, Concluding Observations of the Committee on the Rights of Persons with Disabilities: Tunisia, UN Doc. CRPD/C/TUN/CO/1, 13 May 2011, at paras 30–32. 116  See all the above-mentioned Concluding Observations of the CteRPD on African States. 107 108

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The AComHPR, inter alia, recommended that Ethiopia provides ‘reasonable accommodations for persons with disabilities’117 and asked South Africa to ‘develop a proactive sensitisation policy aimed at reducing or eliminating stereotypes and other perceptions which undermine the full realisation of the rights of older persons and persons with disabilities’.118 However, the decisions of the Commission are often not effectively implemented. For instance, in 2003 the Commission held Gambia in breach of the rights of persons with mental disabilities;119 in its last report to the Commission in 2018, Gambia stated that it is still ‘in the process of reforming … mental health legislation’.120 This situation illustrates a lack of adequate action by many States as concerns the implementation of effective disability measures, a diffuse problem in Africa when it comes to ensuring respect for the rights of persons with disabilities. Within this substantive framework, a major concern is the lack of consultation with persons with disabilities and their supporting organisations in the development of laws and policies. Consultation is an essential procedural component to ensure that adequate regulatory initiatives are adopted and implemented, and the needs of the disabled are met. This issue was raised during the drafting process of the PACHPRPD;121 it appears to be common to African States and has a negative impact on improving the status and rights of persons with disabilities. Indeed, after examining several national reports, the CteRPD expressed its concern, calling on African States to include persons with disabilities in decision-making that affects them. The Committee did so in its Concluding Observations on the reports submitted by

 AComHPR, Concluding Observations and Recommendations on the Fifth and Sixth Periodic Report of the Federal Democratic Republic of Ethiopia, 2015, at para. 52. 118  AComHPR, Concluding Observations and Recommendations on the Combined Second Periodic Report under the African Charter on Human and Peoples’ Rights and the Initial Report under the Protocol to the African Charter on the Rights of Women in Africa of the Republic of South Africa, 2016, at para. 55(ii). 119  AcomHPR, Purohit (2003); See for comments: Imogen Kretzschmar, Ousman Nyan, Ann Marie Mendy and Bamba Janneh, ‘Mental Health in the Republic of The Gambia’ 9(2) International Psychiatry 38, at 40; Satang Nabaneh, ‘Country report: The Gambia’ (2018) 6 African Disability Rights Yearbook 232, at 239. 120  AComHPR, Gambia, Combined Report on the African Charter on Human and Peoples’ Rights for the Period 1994 and 2018, and Initial Report under the Protocol to the African Charter on the Rights of Women in Africa, August 2018, at 73. 121  See, Oyaro, ‘Africa at Crossroads’ (2015) at 350; Serges Alain Djoyou Kamga, ‘A Call for a Protocol to the African Charter on Human And Peoples’ Rights on the Rights of Persons with Disabilities in Africa’ (2013) 21(2) African Journal of International and Comparative Law 219, at 223. AComHPR, Press Release on the Meeting of the Working Group on the Rights of Older Persons and Persons with Disabilities in Africa, 2 March 2014. 117

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Algeria,122 Senegal,123 Rwanda,124 Niger,125 South Africa,126 Sudan,127 Morocco,128 Uganda,129 Gabon,130 and Kenya.131 Problems concerning a lack of implementation and consultation leading to a violation of the rights of persons with disabilities could potentially be resolved through litigation before international bodies, but such cases are rare. Furthermore, the effective implementation of disability rights in Africa is hampered by the fact that there is a lack of coherence in AU initiatives, whereby an unclear vision emerges as concerns central objectives and how subsidiary initiatives contribute to them. It is also noted that disability issues have not been mentioned in several AU documents concerning persons with disabilities, for instance, with regard to health.132 Scholars feel that the AU should consider persons with disabilities together with national economic and social policy, and as a factor in the international development of the continent.133 One of the biggest challenges for the AU system is therefore ensuring overall policy coherence in consultation with persons with disabilities.

10.5  Conclusion The OAU/AU system has improved the rights of persons with disabilities in Africa, particularly via the PACHPRPD.  However, there are still fundamental gaps that prevent the practical realisation of these rights in African States: the concept of ‘different ability’ is far from being actually implemented. Some problems concern

 CteRPD, Concluding Observations on the Initial Report of Algeria, UN Doc. CRPD/C/DZA/ CO/1, 27 June 2019, at paras 8–9. 123  CteRPD, Concluding Observations on the Initial Report of Senegal, UN Doc. CRPD/C/SEN/ CO/1, 13 May 2019, at paras 57 (c)–58. 124  CteRPD, Concluding Observations on the Initial Report of Rwanda (2019) at paras 7–8. 125  CteRPD, Concluding Observations on the Initial Report of the Niger, UN Doc. CRPD/C/NER/ CO/1, 1 May 2019, at paras 5 (c)–6 (c). 126  CteRPD, Concluding Observations on the Initial Report of South Africa, UN Doc. CRPD/C/ ZAF/CO/1, 23 October 2018, at paras 6–7. 127  CteRPD, Concluding Observations on the Initial Report of Sudan, UN Doc. CRPD/C/SDN/ CO/1, 10 April 2018, at paras 5 (c)–6(c–d). 128  CteRPD, Concluding Observations on the Initial Report of Morocco, UN Doc. CRPD/C/MAR/ CO/1, 25 September 2017, at paras 10–11. 129  CteRPD, Concluding Observations on the Initial Report of Uganda (2016) at paras 6–7. 130  CteRPD, Concluding Observations on the Initial Report of Gabon (2015) at paras 8–9. 131  CteRPD, Concluding Observations on the Initial Report of Kenya (2015) at paras 7 and 8(b). 132  Raymond Lang, Marguerite Schneider, Maria Kett, Ellie Cole and Nora Groce ‘Policy Development: An Analysis of the Inclusion of Disability in Selected African Union Policies’ (2017) 37 Development Policy Review 155, at 170. 133  Ibid. 122

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African States, while others concern the African system. Certainly, the situation of persons with disabilities should evolve. Across Africa, there should be greater awareness for the disabled and concrete measures need to be taken beyond legislation and announcements by State authorities. Notably, in addition to insufficient substantive action, as concerns, for instance, access to work, there is a fundamental lack of consultation of person with disabilities prior to implementing relevant measures, resulting in inadequate solutions. Given that the implementation of the decisions of international human rights bodies by African States is not warranted, there should at least be more complaints by disability organisations when African States refuse to implement adequate measures nationally. Complaints would put greater pressure on States to respect and give effect to the rights of persons with disabilities. At the regional level, a comprehensive assessment of the African system and of the coherence of its regulatory initiatives should be carried out. A model could be provided by the AU Disability Architecture, which fosters a comprehensive reform of the AU agenda on disability, although the overall coherence of the Architecture itself is not always clear and proven. A possible solution would be the creation of an AU organ that deals exclusively with issues concerning persons with disabilities in Africa. Such a body, which would complement existing AU organs, would allow the centralisation of disability policies, making adequate recommendations and bringing coherence to scattered and dispersed measures.

References134 Documents ACteERWC. 2014. General Comment on Article 6 of the African Charter on the Rights and Welfare of the Child: ‘Right to Registration of Birth, Name and Nationality’. ACteERWC. 2015. Concluding Observations and Recommendations by the African Committee of Experts on the Rights and Welfare of the Child on the People’s Democratic Republic of Algeria Report on the Status of Implementation of the African Charter on the Rights and Welfare of the Child. ACteERWC. 2017. Concluding Observations and Recommendations of the African Committee of Experts on the Rights and Welfare of the Child on the Initial Report of the Republic of Angola on the Status of the Implementation of the African Charter on the Rights and Welfare of the Child. ACteERWC. 2018. State Party Obligations under the African Charter on the Rights and Welfare of the Child (Article 1) and Systems Strengthening for Child Protection. General Comment No. 5. ACteERWC. 2019. Observations finales et recommandations du Comité Africain d’Experts sur les Droits et le Bien-être de l’Enfant sur le rapport initial de la République Islamique de Mauritanie sur la mise en œuvre de la Charte africaine sur les droits et le bien-être de l’enfant. ACteERWC. 2020. General Comment on Article 22 of the ACRWC: Children in Situations of Conflict. 134

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AcomHPR. 1989. Guidelines for National Periodic Reports. AComHPR. 2007. Resolution on the Establishment and Appointment of a Focal Point on the Rights of Older Persons in Africa, Doc. ACHPR/Res.118(XXXXII)07, Fourty-second Ordinary Session. AcomHPR. 2010. Principles and Guidelines on the Implementation of Economic, Social and Cultural Rights in the African Charter on Human and Peoples’ Rights. AcomHPR. 2011. State Party Reporting Guidelines for Economic, Social and Cultural Rights in the African Charter on Human and Peoples' Rights (Tunis Reporting Guidelines). AcomHPR. 2012, General Comments on Article 14 (1) (d) and (e) of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa. AcomHPR. 2012. Twelfth Extraordinary Session 30 July  – 4 August 2012, Algiers, Algeria. Concluding Observations on the Combined Second, Third, Fourth and Fifth Periodic Reports of the Republic of Angola. AcomHPR. 2014. General Comment No. 2 on Article 14.1 (a), (b), (c) and (f) and Article 14. 2 (a) and (c) of the Protocol to the African Charter on Human and Peoples' Rights on the Rights of Women in Africa. AComHPR. 2014. Press Release on the Meeting of the Working Group on the Rights of Older Persons and Persons with Disabilities in Africa. AComHPR. 2015, Combined Second Periodic Report under the African Charter on Human and Peoples’ Rights and Initial Report under the Protocol to the African Charter on the Rights of Women in Africa. AComHPR. 2015, Concluding Observations and Recommendations on the Fifth and Sixth Periodic Report of the Federal Democratic Republic of Ethiopia. AcomHPR. 2015. General Comment No. 3 on the African Charter on Human and Peoples' Rights: The Right to Life (Article 4). AComHPR. 2015. Periodic Report of Burkina Faso within the Framework of the Implementation of Article 62 of the African Charter on Human and Peoples’ Rights. AcomHPR. 2016. Concluding Observations and Recommendations on the Eight to Elevnth Periodic Report of the Republic of Kenya. AComHPR. 2016. Concluding Observations and Recommendations on the Combined Second Periodic Report under the African Charter on Human and Peoples' Rights and the Initial Report under the Protocol to the African Charter on the Rights of Women in Africa of the Republic of South Africa. AcomHPR. 2016. General Report on the Human Rights Situation in Liberia. AcomHPR. 2017. General Comment No. 4 on the African Charter on Human and Peoples' Rights: The Right to Reparation for Victims of Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (Article 5). AComHPR. 2018. Gambia, Combined Report on the African Charter on Human and Peoples’ Rights for the Period 1994 and 2018, and Initial Report under the Protocol to the African Charter on the Rights of Women in Africa. AcomHPR. 2019, Rapport périodique combiné du Bénin (2009–2018) sur la mise en œuvre de la Charte africaine des droits de l’homme et des peuples (CADHP). AcomHPR. 2019. Fifteenth Periodic Report of the Republic of Niger on the implementation of the African Charter on Human and Peoples’ Rights covering the period 2017–2019, submitted under Article 62 of the said Charter. AcomHPR. 2019. Guidelines on the Right to Water in Africa. AcomHPR. 2019. Periodic Report of the Republic of Malawi on the African Charter on Human and Peoples’ Rights and the Maputo Protocol, May 2015 to March 2019. AComHPR. 2019. Resolution 143 on the Transformation of the Focal Point on the Rights of Older Persons in Africa into a Working Group on the Rights of Older Persons and Persons with Disabilities in Africa, ACHPR/Res.143(XXXXV)09, Fourty-fifth Ordinary Session, Banjul, The Gambia.

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AcomHPR. 2019. Single Report Comprising the Fourth, Fifth and Sixth Periodic Reports of Cameroon Relating to the African Charter on Human and Peoples’ Rights and the First Reports Relating to the Maputo Protocol and the Kampala Convention. AComHPR. 2019. The Eleventh, Twelfth and Thirteenth Periodic Reports of the Republic of Rwanda on the Implementation Status of the African Charter on Human and Peoples’ Rights and the Initial Report on the Implementation Status of the Protocol to the African Charter on Human and People’s Rights and the Rights of Women in Africa (Maputo Protocol), 2009–2016. AcomHPR. 2020. Declaration of the Working Group on the Rights of Older Persons and Persons with Disabilities in Africa of the African Commission on Human and Peoples’ Rights on the occasion of the International Day of Persons with Disabilities. African Charter on Democracy, Elections and Governance, opened for signature 30 January 2007, entered into force 15 February 2012. African Charter on Human and Peoples’ Rights, opened for signature 27 June 1981, 1520 UNTS 217, entered into force 21 October 1986. African Charter on the Rights and Welfare of the Child, opened for signature 1st July 1990, entered into force 29 November 1999. African Union Convention for the Protection and Assistance of Internally Displaced Persons in Africa (Kampala Convention), opened for signature 23 October 2009, entered into force 6 December 2012. African Youth Charter, opened for signature 2 July 2006, entered into force 8 August 2009. Algeria. 2002. Loi n. 02–09 du 25 Safar 1423 correspondant au 8 mai 2002 relative à la protection et à la promotion des personnes handicapées, Journal officiel de la République algérienne No. 34. AU Commission, Department of Social Affairs. 2012. Continental Plan of Action for the African Decade of Persons with Disabilities 2010–2019. AU. 2013. Decision on the Report of the Third Session of the Assembly of Ministers of Social Development of the African Union, EX.CL/Dec.750(XXII). AU. 2019. Directorate of Information and Communication, AU Commission Hosts Opening Ceremony of the Seventh African Forum on Visual Impairment, Press Release No. 145 /2019. AU. 2019. Pan-African Parliament, Resolution Establishing the Adoption of the Model Law on Disability in Africa, Doc. PAP.5/PLN/RES/1/OCT.19. AU. 2019. Seventh African Forum on Visual Impairment, Briefing Note, Addis Ababa, Ethiopia. AU. 2020. Directive on the Inclusion of People with Disabilities in Youth Exchanges. Benin. 2017. Loi n. 20I7.06 portant protection et promotion des droits des personnes handicapées en République du Bénin. Charter of the Organization of African Unity, opened for signature 25 May 1963, 479 UNTS 39, entered into force 13 September 1963. Constitutive Act of the African Union, opened for signature 11 July 2000, 2158 UNTS 3, entered into force 26 May 2001. Convention on the Rights of Persons with Disabilities Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3, entered into force 2 September 1990. CteRPD. 2011. Concluding Observations of the Committee on the Rights of Persons with Disabilities: Tunisia, UN Doc. CRPD/C/TUN/CO/1. CteRPD. 2015. Concluding Observations on the Initial Report of Gabon, UN Doc. CRPD/C/ GAB/CO/1. CteRPD. 2015. Concluding Observations on the Initial Report of Kenya, UN Doc. CRPD/C/ KEN/CO/1. CteRPD. 2015. Consideration of reports Submitted by States Parties under Article 35 of the Convention, Initial reports of State Parties due in 2011: Rwanda, UN Doc. CRPD/C/RWA/1. CteRDP. 2015. Consideration of Reports Submitted by States Parties under Article 35 of the Convention. Initial Reports of States Parties, Due in 2012: Algeria, UN Doc. CRPD/C/DZA/1.

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CteRDP. 2015. Consideration of Reports Submitted by States Parties under Article 35 of the Convention. Initial Reports of State Parties, Due in 2009: South Africa, UN Doc. CRPD/C/ZAF/1. CteRPD. 2016. Concluding Observations on the Initial Report of Uganda, UN Doc. CRPD/C/ UGA/CO/1. CteRPD. 2017. Concluding Observations on the Initial Report of Morocco, UN Doc. CRPD/C/ MAR/CO/1. CteRPD. 2018. Concluding Observations on the Initial Report of South Africa, UN Doc. CRPD/C/ ZAF/CO/1. CteRPD. 2018. Concluding Observations on the Initial Report of Sudan, UN Doc. CRPD/C/ SDN/CO/1. CteRPD. 2019. Concluding Observations on the Initial Report of Algeria, UN Doc. CRPD/C/ DZA/CO/1. CteRPD. 2019. Concluding Observations on the Initial Report of Rwanda, UN Doc. CRPD/C/ RWA/CO/1. CteRPD. 2019. Concluding Observations on the Initial Report of Senegal, UN Doc. CRPD/C/ SEN/CO/1. CteRPD. 2019. Concluding Observations on the Initial Report of the Niger, UN Doc. CRPD/C/ NER/CO/1. CteRDP. 2019. Initial Report Submitted by Benin under Article 35 of the Convention, Due in 2014, UN Doc. CRPD/C/BEN/1. CteRDP. 2019. Initial Report Submitted by Ghana under Article 35 of the Convention, Due in 2014, UN Doc. CRPD/C/GHA/1. CteRDP. 2020. Initial Report Submitted by Burkina Faso under Article 35 of the Convention, Due in 2011, UN Doc. CRPD/C/BFA/1. CteRPD. 2020. Initial Report Submitted by Liberia under Article 35 of the Convention, Due in 2014, UN Doc. CRPD/C/LBR/1. CteRPD. 2020. Initial Report Submitted by Zambia under Article 35 of the Convention, Due in 2012, UN Doc. CRPD/C/ZMB/1. Mali. 2018. Loi N° 2018/027 relative aux droits des personnes vivant avec un handicap, Journal officiel de la République du Mali, 18 June 2018. OAU. 1978. Resolution on the International Year of Disabled Persons, CM/Res. 594 (XXX), Tirthieth Ordinary Session. OAU. 1979. Resolution on the International Year of Disabled Persons, CM/Res. 724 (XXXIII) Rev. 1, Thirty-third Ordinary Session. OAU. 1981. Resolution on Handicapped Persons, CM/Res.875 (XXXVII), Thirty-seventh Ordinary Session. OAU. 1990. African Charter for Popular Participation in Development and Transformation, OAU Doc. A/ECA/CM.16/11. OAU. 1999. Assembly of Heads of State and Government, Continental Plan of Action for the African Decade of Persons with Disabilities (1999–2009). OAU. 1999. Grand Bay (Mauritius) Declaration and Plan of Action. OAU. 2003. Kigali Declaration. Protocol to the African Charter on Human and Peoples' Rights on the Rights of Persons with Disabilities, 29 January 2018. Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa, opened for signature 7 November 2003, entered into force 25 November 2005. Protocol to the African Charter on Human and Peoples’ Rights on the Establishment of an African Court on Human and Peoples’ Rights, opened for signature 10 June 1998, entered into force 25 January 2004. Rwanda. 2007. Loi n° 01/2007 portant protection des personnes handicapées en général, J.O n.° spécial, 21 May 2007.

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Cases AcomHPR, Purohit and Moore v. The Gambia, Communication No. 241/01, May 2003. CteRPD, Y v. United Republic of Tanzania, Communication No. 22/2014, 18 August 2017, UN Doc. CRPD/C/18/D/22/2014. CteRPD, Y v. United Republic of Tanzania, Communication No. 23/2014, 31 August 2018, UN Doc. CRPD/C/20/D/23/2014.

Bibliography Appiagyei-Atua, K. (2017). A comparative analysis of the United Nations Convention on the Rights of Persons with Disability and the African Draft Protocol on the Rights of Persons with Disabilities. Law Democracy & Development, 21, 153. Biegon, J. (2011). The promotion and protection of disability rights in the African human rights system. In I. G.-d. Plessis & T. van Reenen (Eds.), Aspects of disability law in Africa (p. 53). Pretoria University Press. Broderick, A., & Ferri, D. (2019). International and European disability law and policy: Text, cases and materials. Cambridge University Press. Chenwi, L. (2016). Protection of the economic, social and cultural rights of older persons and persons with disabilities in the African regional system. In D. M. Chirwa & L. Chenwi (Eds.), The protection of economic, social and cultural rights in Africa: International, regional and national perspectives (p. 180). Cambridge University Press. Chirwa, D. M., & Chenwi, L. (Eds.). (2016). The protection of economic, social and cultural rights in Africa: International, regional and national perspectives. Cambridge University Press. Grobbelaar-du Plessis, I., & Van Reenen, T. (Eds.). (2011). Aspects of disability law in Africa. Pretoria University Press. Kamga, S.  A. D. (2013). A call for a Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa. African Journal of International and Comparative Law, 21(2), 219. Kanter, S. A. (2015). The development of disability rights under international law. From charity to human rights. Routledge. Kretzschmar, I., Nyan, O., Mendy, A. M., & Janneh, B. (2012). Mental health in the Republic of the Gambia. International Psychiatry, 9(2), 38. Lang, R., Schneider, M., Kett, M., Cole, E., & Groce, N. (2017). Policy development: An analysis of the inclusion of disability in selected African Union policies. Development Policy Review, 37, 155. Mzikenge Chirwa, D., & Chenwi, L. (Eds.). The protection of economic, social and cultural rights in Africa: International, regional and national perspectives. Cambridge University Press. Nabaneh, S. (2018). Country report: The Gambia. African Disability Rights Yearbook, 6, 232. Onazi, O. (2020). An African path to disability. Justice community, relationships and obligations. Springer. Oyaro, O. L. (2015). Africa at crossroads: The United Nations Convention on the Rights of Persons with Disabilities. American University International Law Review, 30(2), 347. Viljoen, F., & Biegon, J. (2014). The feasibility and desirability of an African disability rights treaty: Further norm-elaboration or firmer norm-implementation? South African Journal on Human Rights, 30(2), 345.

Chapter 11

Disability Rights in the Asia-Pacific Region: A Fragmented Approach Otto Henfling and Lana Leslie

Contents 11.1  I ntroduction 11.2  K  ey Institutions and Initiatives 11.3  Incheon Strategy 11.3.1  The Problem of the Definition of the Concept of ‘Disability’ 11.3.2  Country Situation: Data, Work and Poverty 11.4  The Situation in Australia 11.4.1  Governmental Action: The NDIS 11.4.2  Australian First Nations People 11.4.2.1  First Nations People and Non-Universality of the Concept of ‘Disability’ 11.4.2.2  Systemic Problems, Particularly Remoteness 11.5  Inclusiveness in Middle-East Countries: Substance and Procedure 11.6  Conclusion References

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Abstract  The Asia-Pacific region hosts 690 million people with disabilities, who are often excluded from a productive life. Despite the adoption of some coherent regulatory initiatives, such as the Incheon Strategy of the United Nations (‘UN’) Economic and Social Commission for the Asia-Pacific, the absence of a comprehensive human rights architecture makes it difficult to harmonise disability governance in the region. Differences in the implementation of disability policies are increased by factors such as the divide between developed and developing countries and the secular or non-secular nature of States. On the one hand, in Australia, the National Disability Insurance Scheme is a significant advancement towards the achievement of the objectives of the Convention on the Rights of Persons with Disabilities (‘CRPD’), but there is still work to do to ensure equal access as between participatO. Henfling (*) Growing Potential Ltd, Blacktown, Australia e-mail: [email protected] L. Leslie Gunnedah Hill Pty Ltd, Leura, NSW, Australia e-mail: [email protected]; www.gunnedahhill.com.au © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_11

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ing First Nations and non-First Nations People. On the other hand, China and the Philippines have not yet completed the transition to the inclusive model of disability. Similarly, a charity approach is prevalent in Qatar and Saudi Arabia, which have progressed in the implementation of the CRPD but are far from adopting measures that allow fully non-discriminatory inclusive education and access to work. Fragmentation is further entangled by different approaches to the concept of ‘disability’, which makes it difficult to define a common regional strategy and fully implement the concept of ‘different ability’. Keywords  Asia-Pacific · Incheon Strategy · Cultural relativism · Australia · National Disability Insurance Scheme · First Nations People · Disability · Different ability

11.1  Introduction The Asia-Pacific region is home to 690 million persons with disabilities, many of whom are marginalised and excluded from a fulfilling and productive life.1 According to the United Nations (‘UN’) Economic and Social Commission for the Asia-Pacific (‘ESCAP’), almost 60% of persons with disabilities live in Asia and the Pacific.2 Historically, people with disabilities have been dependent on charities and charitable works, at least within Western societies. Many charitable organisations have been created to work with various groups of disadvantaged persons within communities and people with disabilities were, and continue to be, part of that cohort. While the notion of like-minded people banding together at a local level, or even a regional or national level, to support others is, in itself, a good and generous act, it also means that this has translated into the ‘philosophy and the design of social protection policies towards them’.3 Far from implementing the concept of ‘different ability’, the image of a person with a disability (the images change dependant on the cause) is still used to elicit pity and donations for individual charities, particularly, but not only, in African and Middle-Eastern countries. This is not to say that the work of the many charities working for people with disabilities should be hampered or should not happen, rather, according to the ESCAP, the ideal is that Governments enact policies that take into account and support people with disabilities to live lives that are not adversely impacted by a world that does not, or refuses to, accommodate them.4

 UN ESCAP, Disability in Asia and the Pacific: The Facts, Report, 28 December 2018.  Ibid. 3  Id., Building Disability-Inclusive Societies in Asia and the Pacific: Assessing Progress of the Incheon Strategy, Report. 25 November 2017, at 2. 4  UN ESCAP, Disability in Asia and the Pacific (2018) at 6. 1 2

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Given the absence of an overarching supranational framework for fundamental rights, fragmented initiatives have been undertaken on disability rights in the Asia-­ Pacific. In 2002, a high-level intergovernmental meeting held in Japan adopted the Biwako Millennium Framework for Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the Pacific.5 In light of a rights-based approach, the Framework underscores the priorities of detection and education, training and employment, access to built environment and public transport, communication and information, as well as poverty alleviation. Other relevant initiatives, notably fostered by the ESCAP, include the Ministerial Declaration on the Asian and Pacific Decade of Persons with Disabilities (2013–2022)6 and the Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific.7 These have ensured a certain level of policy coherence; however, the implementation of the more general UN Convention on the Rights of Persons with Disabilities (‘CRPD’),8 to which most Asian and Pacific countries are parties, is still largely fragmented, as, for instance, Middle-Eastern countries have implemented the Convention in a way that is quite different from policies adopted in Japan, China and Australia. This contribution proceeds in four steps. First, the chapter outlines key public and private institutional and regulatory initiatives in the area of disability. Second, the chapter illustrates the Incheon Strategy as the main regulatory instrument in the area of disability in the Asia-Pacific. Third, the research explores the situation in Australia, with a specific investigation on the situation of the First People of Australia. Fourth, the analysis focuses on the implementation of disability rights in Middle-Eastern countries. The aim is to highlight analogies and differences between disability policies throughout the Asia-Pacific and critically assess their level of coherence and effectiveness.

11.2  Key Institutions and Initiatives In the absence of a general institutional framework for human rights in the Asia-­ Pacific, different public and private institutions have developed scattered initiatives addressing the question of disability. However, despite the lack of a centralised framework, such institutions and initiatives often tend to network and coordinate with each other, which has led to some policy coherence. Among public institutions, besides States, different governmental organisations are active at the regional level in the area of disability. Notably, the Association of 5  Id., Millennium Framework for Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the Pacific, 28 October 2002. 6  Id, Asian and Pacific Decade of Persons with Disabilities, 2013-2022, Res. 68/7, 23 May 2012. 7  Id, Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific, ST/ESCAP/2648 (2012). 8  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008.

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Southeast Asian Nations (‘ASEAN’) has adopted initiatives such as the Bali Declaration on the Enhancement of the Role and Participation of the Persons with Disabilities in ASEAN Community,9 which proclaimed the ASEAN Decade of Persons with Disabilities (2011–2020), urging Member States to fulfil the rights of persons with disabilities by mainstreaming a disability perspective in the implementation of ASEAN policies.10 The Asia-Pacific Economic Cooperation (‘APEC’) has taken action aimed at fostering inclusiveness for persons with disabilities. Notably, in 2016, upon a proposal by China, APEC undertook initiatives such as the ‘Assistive Devices + Internet Cross-Border E-Commerce Platform’ and the Project ‘Promoting Participation of Persons with Disabilities in Economic Activities’.11 The UN Economic and Social Commission for Western Asia (‘ESCWA’) has taken action jointly with the League of Arab States to periodically collect and make available baseline data on disability in the Arab region, including key issues such as access to education and employment.12 Although such initiatives have no regulatory effect, they represent an important effort in providing a basis for implementing adequate disability policies under the CRPD.13 The most prominent and comprehensive public institution is, naturally, the ESCAP, which is the UN regional branch for Asia and the Pacific.14 The Commission, which fosters sustainable development and inclusiveness,15 has adopted key strategic initiatives in the area of disability. The most comprehensive initiative is the Incheon Strategy, which aims at implementing inclusive policies along the lines of the 2030 Agenda for Sustainable Development and Sustainable Development Goals (‘SDGs’).16 This instrument operates against the background of the CRPD and the Sendai Framework for Disaster Risk Reduction 2015–2030,17 guiding governments toward disability-inclusive sustainable development.18 The Incheon Strategy is the outcome of collaboration with governments, sector-organisations, stakeholders and regional consultation. Based on the fundamental principle of non-discrimination, the Strategy aims to foster inclusive development in the Asia-Pacific via the

9  ASEAN, Bali Declaration on the Enhancement of the Role and Participation of the Persons with Disabilities in ASEAN Community, 17 November 2011. 10  Ibid., at para. 5. 11   APEC, Group of Friends on Disability, https://www.apec.org/Achievements/Group/SOM-­ Steering-­C ommittee-on-Economic-and-Technical-Cooperation/Working-Groups/Group-ofFriends-on-Disability. 12  ESCWA and League of Arab States, Disability in the Arab Region: An Overview (2018). 13  ESCWA, Disability in the Arab Region 2018, UN Doc. E/ESCWA/SDD/2018/1; CRPD, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008 14  UN ESCAP, https://www.unescap.org. See further the contribution by Ottavio Quirico on the UN in this volume. 15  Id., About ESCAP, https://www.unescap.org/our-work. 16  Incheon Strategy (2012). 17  UN Office for Disaster Risk Reduction, Sendai Framework for Disaster Risk Reduction 2015-2030 (2015). 18  ESCAP, Incheon Strategy (2012) at 3.

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i­mplementation of legislation, policies and programmes aiming to reduce poverty, fostering access to work and participation. Essentially, the Strategy facilitates the implementation of the CRPD in the Asia-Pacific region.19 Yet, it is considered that governments have often failed to adopt strategies to recruit and empower persons with disabilities and to mainstream their societal inclusion in political processes.20 This has prompted the development of several non-governmental organisations active in the sector. Interestingly, the Asia-Pacific Forum of National Human Rights Institutions developed a Manual providing guidance for national agents on how to approach disability.21 Since 2002, the Pacific Disability Forum (‘PDF’) has worked to achieve inclusiveness for people with a disability in Pacific Countries and territories, through policies that abolish barriers across vulnerable groups. For instance, in 2010, the PDF engaged with the Australian Agency for International Development at the Department of Foreign Affairs and Trade in the context of the Development for All initiative.22 This aims to foster the capacity of disability persons organisations (‘DPOs’) in the Pacific to better represent members and implement the CRPD in the region.23 The ASEAN Disability Forum (‘ADF’) is a network composed of representative organisations of people with a disability in ASEAN countries in Southeast Asia and provides a platform to coordinate action for disability-inclusive policies.24 Inter alia, the ADF developed research and preparatory work for the adoption of the Bali Declaration on Disability in the ASEAN Community, which was adopted at the 19th ASEAN Summit in 2011.25

11.3  Incheon Strategy The 2012 Incheon Strategy was developed by the ESCAP over two years through consultations with Governments and civil society26 and recalls UN General Assembly and ESCAP resolutions going back to 1982.27 The Strategy hopes to  Ibid., at 15.  See, for instance, International Foundation for Electoral Systems, Advancing Disability Rights in Southeast Asia through Regional Network of Advocates, 12 December 2017, https://www.ifes.org/ news/advancing-disability-rights-southeast-asia-through-regional-network-advocates. 21  Human Rights and Disability: A Manual for National Human Rights Institution, 14 March 2017, https://www.asiapacificforum.net/resources/human-rights-and-disability-manual-nhris. 22  Development for All: Towards a Disability–Inclusive Australian Aid Program, https://www. futurepolicy.org/youth-empowerment/development-for-all-towards-a-disability-inclusiveaustralian-aid-program. 23  PDF, About Us, http://www.pacificdisability.org/About-Us.aspx. 24  ADF, http://aseandisabilityforum.org/digaleri. 25  ASEAN, Bali Declaration (2011). 26  Incheon Strategy (2012). 27  Ibid., at 3. 19 20

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‘accelerate disability-inclusive development’ and is based on 20 years of experience during the 1983–2002 and 2003–2012 Decades of Disabled Persons.28 Citing the principles of the CRPD, the Strategy is also based on a number of key tenets, including respect for the inherent dignity of persons; non-discrimination; effective participation and inclusion in society; respect for difference and acceptance of persons with disabilities; equality of opportunity and of gender; accessibility; and respect for the evolving capacity of children with disabilities.29 The Strategy articulates ten ambitious goals centred on reducing poverty, improving employment prospects, early intervention for children with disability, and enhanced access to physical environment and public transport. Also included are goals to ensure participation in political processes, social protection, gender equality and reliable data.30

11.3.1  T  he Problem of the Definition of the Concept of ‘Disability’ In 2017, the ESCAP published its first review of progress against the Incheon Report.31 The review identifies the lack of a consistent definition of ‘disability’ as a critical issue.32 Indeed, it is difficult to achieve uniform regulation throughout Asia-­ Pacific countries, if there are multiple definitions of disability: this adds to the fragmented picture. There is no single, universal, definition of ‘disability’ or the associated forms of the word. The word itself is a combination of the Latin ‘dis’ (meaning a ‘lack of’ or ‘opposite to’) and the term ‘ability’ (meaning ‘a capacity to do’)33 and refers to ‘the lack of capacity to do’ something. On the face of it, it should be easy to understand the concept of disability, as it relates by definition to the inability to do something: our thoughts may go to those things we, as humans, can’t do (for instance, breathing under water or flying unaided), or thoughts go to physical conditions that prevent some of our sisters and brothers from doing things most of us take for granted (for instance, amputees or those confined to wheelchairs) or other issues (such as mental or psychological impairments). The issue is that, by the former definition, we all have multiple disabilities – we all have a multitude of things we do not have capacity or ability to perform. What then do we mean by ‘disability’? The following table shows a concise collection of definitions (Table 11.1).

 Ibid., at 12.  Ibid., at 16. 30  Ibid, at 13. 31  UN ESCAP, Building Disability-Inclusive Societies (2017). 32  Ibid., at 2. 33  Online Etymology Dictionary, https://www.etymonline.com/word/dis-?ref=etymonline_crossreference. See also Gauthier De Beco, Disability in International Human Rights Law (OUP, 2021) at 67-68. 28 29

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Table 11.1  Definition of ‘disability’ Source Merriam-Webster (merriam-­webster. com)

Definition of ‘disability’ 1. A physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions. 2. An impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment. The Free Dictionary 1. Impairment of function below the maximal level, either physically or (Medical Dictionary: mentally. 2. Anything that causes such an impairment. thefreedictionary. 3. The United States Government defines a disability as ‘a physical or com) mental impairment that substantially limits one or more of an individual’s major life activities’; this includes both those individuals with a record of an impairment and those regarded as having such an impairment. Persons are considered to have a disability if they have a limitation, Australian Public Service Commission restriction or impairment, which has lasted, or is likely to last, for at least six months and restricts everyday activities (apsc.gov.au) ‘Disabilities’ is an umbrella term, covering impairments, activity The World Health limitations, and participation restrictions. An impairment is a problem in Organisation (disabled-­world.com) body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus, disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives. A disability is any continuing condition that restricts everyday activities. Western Australian The Disability Services Act 1993 (WA) defines ‘disability’ as meaning a Government (What is disability?) disability:  which is attributable to an intellectual, psychiatric, cognitive, neurological, sensory or physical impairment or a combination of those impairments;  which is permanent or likely to be permanent;  which may or may not be of a chronic or episodic nature;  which results in substantially reduced capacity of the person for communication, social interaction, learning or mobility and a need for continuing support services.

The lack of an absolutely consistent definition is apparent; however, there is a theme that can be extracted around the notions of restrictions to everyday activities, which raises the question of what these ‘everyday activities’ are. Vic Finkelstein, a South African and British academic, pondered a (hypothetical) situation where a thousand people in wheelchairs settle together in a village with the ability to control all aspects of their lives. In time, the community plans its own buildings, develops its own building codes (doors and ceilings are lowered), and physical difficulties are overcome and tuned with needs. After some time, a few non-wheelchair users, that is, able-bodied people, settle in the village and are constantly knocking their heads on ceilings and door frames, and after some time they start developing back aches and other problems. The village’s medical profession

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concludes that the non-wheelchair users have an inability to carry on the normal everyday activities within the village and become the recipients of charity and government support to assist them.34 Although this might sound a little far-fetched, consider the different ‘everyday activities’ between people working in finance in a major international city and those who may be living 100 or more kilometres away on a dairy farm (many a movie has played on these differences for its storyline). The notion of ‘disability’ is clearly, then, one to be considered within context. In the Finkelstein story, to be able to walk leads to being considered to have a disability within that village community. As recent as 2018, the UN, through ESCAP, identified that ‘[a]nother issue is that the means to identify disability differs between and within countries and areas owing to differing conceptualizations of disability and the operationalization of the definition.’35 ESCAP, then, considers that the lack of a consistent definition between countries, and even between different areas within countries, makes it more complex to respond to the issue of ‘disability’ at a global, or macro, level. Broadly speaking, we could say that when we talk about ‘disability’ we are talking about an inability due to a physical, psychological, or mental deviation from the accepted norm to carry out ‘everyday activities’ for an extended period. Excluded from this definition are inabilities due to lack of experience, training, education, or similar, or short-term conditions. This definition keeps the focus on physiological deviations that impact everyday life in the long term.

11.3.2  Country Situation: Data, Work and Poverty In 2017, the rate of disability amongst the ESCAP Members ranged from 1.1% to 24%,36 with the World Health Organisation (‘WHO’) estimating a global rate of 15.3% of the population,37 giving further weight to the concerns about a consistent and consistently applied definition. Within this framework, the ESCAP Incheon Review found that only 12 countries of the 43 in the Asia-Pacific have enacted any anti-discrimination legislation.38 Furthermore, the report found that poverty rates range between 3.9% and 20.6% in the countries and regions (covered by ESCAP) where data is available.39 In addition, the report found that people with disabilities are between two and six times less likely to be employed than those without a disability and those who do work are more likely to be in lower paid roles and roles that

 Gerard Goggin and Christopher Newell, Disability in Australia : Exposing a Social Apartheid (UNSW, 2005). 35  UN ESCAP, Building Disability-Inclusive Societies (2017). 36  Ibid., at 2. 37  Ibid., at 14. 38  Incheon Strategy (2012) at v. 39  Ibid., at 13. 34

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are more likely to be short-term.40 The Review also found that children with disabilities often miss out on early intervention services.41 Early intervention services are a critical element to ensuring that all children with a disadvantage, especially one of health or disability, have the best possible opportunities to lead a mainstream life and do not end up in poverty. While early intervention is not a panacea for all issues, it is a key element in giving young, disadvantaged people an advantage as they become adults. A critical goal of the Incheon Strategy relates to strengthening social protection, in particular, increasing access to programmes such as government-supported healthcare and cash transfer.42 In this regard, the ESCAP Review found a lack of appropriate data in relation to this goal. Data in relation to government health care support was only available for five countries, while data on government-funded disability programmes was available from only ten countries or regions.43 The spread of data between nations needs to be analysed with significant caution as there is a lack of uniformity in what the data measures. By way of example, the reported proportion of people with disabilities receiving government-funded disability benefits range from 28.4% (Republic of Korea) to 100% (Georgia, The Russian Federation, and Timor-Leste).44 This data was collected from government authorities in most cases. A 2019 Report of the ESCAP Working Group on the Asian and Pacific Decade of Persons with Disabilities notes that ‘many developing countries in the region’ spend ‘only one third of the global average of social protection expenditures as a percentage of GDP’.45 This results in leaving the vast majority of those countries’ citizens without suitable or sufficient social support and the bulk of those people are people with disabilities.46 The report, not surprisingly, concludes that a universal coverage scheme is the best option, so much so that there is ‘a need to develop non-contributory and rights-based social protection programmes for people with disabilities’.47 An additional issue is that eligibility criteria for disability benefits may work as a disincentive to employment in those jurisdictions where access to disability support is contingent on proving an inability to ‘work’ or to contribute to the economy through the exchange of labour. In these cases, people with disabilities often have to choose between finding a (often low-paid) job (often with low job security) or being deemed ‘unable to work’ and relying on Government benefits.48 This either/or  Ibid., at 15.  Ibid., at 35 ff. 42  Incheon Strategy (2012) atat 25. 43  Ibid., at 67-68. 44  Ibid, at 68. 45  UN ESCAP, Report on the Fifth Session of the Working Group on the Asian and Pacific Decade of Persons with Disabilities, 2013–2022, UN Doc. ESCAP/75/7, 8 April 2019, at 7, para. 43. 46  Ibid. 47  Ibid., at 7, para. 45. 48  UN ESCAP, Report on the Sixth Session of the Working Group on the Asian and Pacific Decade of Persons with Disabilities, 2013-2022, UN Doc. ESCAP/77/14, 25 September 2020, at 9, para. 54. 40 41

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Table 11.2  Legislation on persons with disability in ASEAN countries before and after the ratification of the CRPD No Country 1 Thailand

2

Indonesia

3 4 5

Malaysia Singapore Philippines

6 7 8

Brunei Darussalam Lao PDR Myanmar

9

Cambodia

100 Vietnam

Before CRPD ratification Rehabilitation of Disabled Persons Act A.D.1991 (B.E.2534); Disabilities’ Quality of Life Promotion Act B.E. 2550 (2007) Law No. 4/1997 on the Rights of Persons with Disabilities Persons with Disabilities Act (2008)

After CRPD ratification

Law No. 8/2016 on the Rights of Persons with Disabilities Being drafted Forthcoming

Republic Act No. 7277 (Magna Carta for Persons with Disabilities) (1991, amended as R.A. 9442) Old-Age and Disability Pension Act Being drafted (1954, rev. in 1984) Being drafted Pyidaungsu Hluttaw Law No. Law on Rehabilitation and Employment 30/2015 – Law on the Rights of Persons with Disabilities, enacted in of Persons, 5 June 2015. 1958 (JICA 2002b) Forthcoming Law on the Protection and Promotion of the Rights of Persons with Disabilities (2009) Disability Law 51/2010/QH12 (2010) Being drafted

Source: UN Department of Economic and Social Affairs, Disability Laws and Acts by Country/Area

situation can be addressed by allowing benefit recipients to earn some income with a sliding scale reduction in Government assistance. This is all with the backdrop of all ASEAN Member States having ratified the CRPD, which commits States to removing physical and attitudinal barriers to protect the rights of people with a disability. Within this framework, most of the Member States of ASEAN have passed legislation that implements their CRPD obligations (Table 11.2). A Report drafted in 2020 by ASEAN identifies laws that provide for inclusiveness for people with a disability within ASEAN Member States,49 based on priority areas stipulated in the Mobilisation Framework of the ASEAN Decade of Persons with Disabilities, (2011–2020).50 It is evident from the report that there is still much work to do to address priority areas in Member States. However, this is work in progress and all nations that have commenced on the path need to be congratulated for where they are and encouraged to continue on that path. It needs to be noted that the different types of government systems and policies within the ASEAN Member States, and, for that matter, beyond ASEAN to any other grouping including ESCAP,

 Maulani A.Rotinsulu, The Rights of Persons with Disabilities: The Implementation of SDGs and CRPD in ASEAN Countries (2020). 50   ASEAN, Mobilisation Framework of the ASEAN Decade of Persons with Disabilities, 2011-2020 (2013). 49

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add a complexity to understanding the progress being made at an aggregated level and sometimes at a local level. The review of periodic reports of different Asia-Pacific States by the UN Committee on the Rights of Persons with Disabilities (‘CteRPD’) also shows that there are several limits in the implementation of adequate disability policies under the CRPD.51 Notably, the Concluding Observations adopted by the CteRPD on China in 2012 underscore that the country has made significant progress as concerns accessibility and work inclusion for people with disabilities, via initiatives such as the Law on the Protection of Persons with Disabilities.52 However, the Committee underscored the lack of a comprehensive action plan aiming to allow full participation of representative organisations and implement the human rights model of disability.53 Inter alia, the Committee highlighted the need to adopt measures to replace guardianship and trusteeship measures that allow substituted decision-­making with supported decision-making.54 The Observations also underscore the need for a review of procedural laws to establish accommodation for participation of persons with disabilities in the judicial system as subjects of rights rather than objects of protection.55 In sum, the Observations point out that Chinese legislation has not yet fully ensured a transition to the social model of disability. The 2018 Concluding Observations of the CteRPD on the Philippines welcome the inclusion of the CRPD as part of the organic law of the State, which triggers its applicability before domestic courts.56 The Observations also commend the adoption of legislative measures such as the 2012 Republic Act 10524, which reserves 1% of governmental positions to persons with disabilities.57 However, on the negative side, the Committee highlighted a prevalence of medical and charity approaches in Philippine legislation and policies on persons with disabilities, which overemphasise ‘impairment, medical treatment and social care’ and are ‘in stark contrast to the human rights model’ underpinning the CRPD.58 As such, besides the adoption of a comprehensive national action plan aiming to adequately implement the CRPD,59 the Observations recommended that the State promote awareness-raising campaigns, in collaboration with representative organisations, with a view to enhancing a positive image of people with disabilities as the addressees of fundamental rights.60 51  CteRPD, Concluding Observations on State Reports under the CRPD, https://tbinternet.ohchr. org/_layouts/15/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=5. 52  CteRPD, Concluding Observations on the Initial Report of China, UN Doc. CRPD/C/CHN/ CO/1, 15 October 2012, at paras 5-6. 53  Ibid., at para. 10. 54  Ibid., at para. 22. 55  Ibid., at 4, para. 24. 56  CteRPD, Concluding Observations on the Initial Report of the Philippines, UN Doc. CRPD/C/ PHL/CO/1, 16 October 2018, at para. 4. 57  Ibid. 58  Ibid., at para. 6. 59  Ibid., at para. 7. 60  Ibid., at para. 19.

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11.4  The Situation in Australia 11.4.1  Governmental Action: The NDIS In 2011, the Australian Government’s Productivity Commission released a two-­ volume report titled ‘Disability Care and Support’.61 The report found that the then-­ existing system was such that most Australian ‘families and individuals could not adequately prepare for the risk and financial impact of significant disability’.62 Furthermore, the report considered that ‘[t]he current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports. The stresses on the system are growing, with rising costs for all governments’.63 The report went on to recommend a national insurance scheme that would provide cover for all Australians in the event that they experience significant disability. Further, the report recommended that the funding of this scheme be a core function of Government (as with Medicare and pensions).64 The scheme, dubbed the National Disability Insurance Scheme (‘NDIS’) by the authors of the report, would have the following functions: (a) funding long-term and high quality care and support for people with significant disabilities, although not providing income replacement or similar; (b) improving the linkage between people with disabilities and community services and agencies including, particularly, not-­for-­profit organisations; (c) providing information to people; and (d) fostering quality and diffusion of best practices among providers.65 A key feature of the proposed NDIS was that participants would have a choice both to meet their needs and to select their provider(s), through tailored packages. The recommendations of the Productivity Commission meet many of the objectives of the Incheon Strategy (and other similar strategies), especially Strategy 4, concenring the strengthening of social protection.66 By providing a national approach rather than a State-based approach, the Productivity Commission was hoping to ensure that all Australians would have equal access to assistance if they have disabilities. In fact, the Commission considered a State-based, or federated, model, to be an inferior model with the potential to revert to the then-existing system. The Commission calculated the cost of funding the ‘disability sector’ at $7 billion (AUD) across all tiers of Government (in the early 2000s).67 The NDIS was predicted to add an additional $6.5 billion (AUD) to the cost.68  AU Productivity Commission Inquiry Report, Disability Care and Support, 31 July 2011.  Ibid., vol. 1, at 2. 63  Ibid. 64  Ibid. 65  Ibid. 66  Incheon Strategy (2012) at 24. 67  Ibid., at 3. 68  Ibid. 61 62

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The National Insurance Disability Scheme Act 2013 (Cth) came into law in 201369 and is considered to be one of the largest reforms of social policy in Australia’s history, with one of its central themes being its ‘person-centred’ rather than ‘programme-centred’ nature.70 That is, the NDIS (ideally) focuses on the needs of the individual rather than on forcing the needs of the individual into a pre-­ determined programme with pre-determined outcomes. In this way, it gives control to individuals to determine what is best for them. Importantly, it is an uncapped, demand-driven insurance scheme ensuring that money does not dry up for some people.71 While the scheme is uncapped, that does not mean that participants receive the services they want or need. A survey conducted in 2020 found that over two thirds of 410 surveyed organisations providing services through the NDIS had to turn potential clients away as they did not have the capacity to deliver the service(s) requested.72 In 2016, the Australian Government released data showing that 18.3% of Australians have a disability, defined as ‘having health conditions or impairments that are associated with limitations or restrictions lasting six months or more and affecting daily activities’.73 This means that there are approximately 4.5 million Australians with a disability. The NDIS is now fully rolled out in Australia; however, services under the NDIS are not consistently accessible to all Australians. The issue here is not about active or intentional discrimination but rather the effect of ‘market forces’, especially in regional and remote areas, where utilisation of plans remains below the average.74 Yet ‘market forces’ were touted by the original Productivity Commission Report as one of the key drivers of quality in the NDIS.75 What the NDIS has not been able to do is ensure that people outside metropolitan areas have access to the full range of services, precisely because ‘market forces’ mean that independent practitioners decide where they will go and deliver their services. However, even in metropolitan areas services are hard to access, as demand for services significantly outstrips the capacity of existing practitioners to deliver those services. For example, the State of the Disability Sector Report 2020 found that the ‘NDIS will soon have 500,000 participants and, according to some estimates, the disability workforce will need to double in size in the next three years just to keep pace with increasing demand’.76 Anecdotal information has wait lists to

 National Insurance Disability Scheme Act, n. 20 (2013).  UN ESCAP, Disability at a Glance 2019: Investing in Accessibility in Asia and the Pacific, 12 December 2019. 71  Ibid., at 61. 72  NDS, State of the Disability Sector Report (2020) at 5. 73  UN ESCAP, Disability at a Glance (2019) at 52. 74  NDS, State of the Disability Sector (2020) at 35. 75  AU Productivity Commission Inquiry Report, Disability Care (2011) at 559. 76  NDS, State of the Disability Sector (2020) at 5. 69 70

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access services in Sydney for people already approved and with NDIS packages at six to twelve months or in some cases even longer.77 At 500,000, the number of NDIS participants is still well below the 4.5 million Australians estimated by the Australian Government. There are legitimate reasons why some of these four million Australians are not in the NDIS scheme (age is an obvious one, as the NDIS is only available to people under 65 years).78 In any case, while the NDIS is a good, if partial, response to the Incheon Strategy, it still has a way to go to be accessible and available to all Australians. In addition, the ‘market forces’ underpinning of the NDIS will always mean that those who live, or choose to live, in regional and remote Australia lack access to the services they have the money to acquire. One of the groups most impacted by this limit are the First Nations People of Australia (the Aboriginal and Torres Strait Islander Peoples of Australia).79 The 2019 Concluding Observations of the CteRPD on the combined second and third Report of Australia under the CRPD commend the adoption of the National Insurance Disability Scheme Act 2013 (Cth) and legislation such as the Disability Inclusion Act 2018 (Cth).80 However, the Observations underscore a lack of harmonisation of domestic legislation with the CRPD and issues such as the weakness of mechanisms and limited funding under the National Disability Strategy and the National Disability Agreement for ensuring participation of persons with disabilities in decision-making.81 The Observations also highlight the complexities of the disability assessment that individuals face to become eligible to receive services through the NDIS, which is still heavily grounded in the medical model of disability.82 Furthermore, the Committee points out the inaccessibility of the NDIS, owing to limited accessible information, and confirms the lack of services in remote areas, as well as the unsustainability and inadequacy of resources for advocacy programmes.83

 Personal Communication.  AU Productivity Commission Inquiry Report, Disability Care (2011) at 16. 79  NDS, State of the Disability Sector (2020) at 39. 80  CteRPD, Concluding Observations on the Combined Second and Third Periodic Reports of Australia, UN Doc. CRPD/C/AUS/CO/2-3, 15 October 2019, at para. 4. 81  Ibid., at para. 6. 82  Ibid. 83  Ibid. 77 78

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11.4.2  Australian First Nations People 11.4.2.1  F  irst Nations People and Non-Universality of the Concept of ‘Disability’ As the Finkelstein story points out,84 the notion of ‘disability’ is not a universally accepted concept but, rather, a culturally specific one. The notion is not as readily accepted or understood in (at least) some First Nations Peoples’ cultures, at least in the case of Australia.85 In part, this is about the concept of disability. Traditional cultures, that is, First Nations people before contact with Westerners, worldwide have had to incorporate ‘disability’ into their normal day-to-day practices and cultures for hundreds or thousands of years without elaborate government programmes or organised charitable works. There is evidence that in First Nations cultures in Australia, or at least some of them, the concept of disability simply did not exist, rather the primacy of the First Nations Culture and identity overshadowed any physical constraints.86 For example, the Anangu people located in the Northern Territory have words which describe a factual situation such as being blind (kuru pati), deaf (pina pati), and back pain (witapijara) but they do not have a word or words for ‘disability’. Furthermore, these words were not used to denigrate people but rather to describe their functioning capacity.87 Australia’s First Nations people, the Aboriginal and Torres Strait Islander people, have a proud history estimated to be at least 60,000 years old.88 Within those cultures the concept of ‘disability’ or ‘being disabled’ is considered a non-First Nations People concept – one imposed or brought in by people who are not part of Australia’s First Nations Peoples.89 Yet, there has been little research or study undertaken to understand the notion that ‘disability’ amongst Australia’s First Nations People is different from the concept for Australia’s non-First Nations People. As a result, the concept of ‘disability’ assumes a Western (or at least non-First Nations People) approach, therefore, inadvertently, ‘imposing a colonial normativity while contesting the normativity of non-disabled bodies’.90 In other words, if, within a culture, the concept of ‘disability’ is non-existent then the introduction of the concept from another culture (in this case a primarily Western one) changes the discourse within the First Nations People culture and includes concepts that are foreign  See s. 3.1 above.  Julie King and Mark Knox, ‘Negotiating Disability and Colonisation: The Lived Experience of Indigenous Australians with a Disability’ (2013) 29(5) Disability and Society 738, at 746. 86  Scott Avery, Culture Is Inclusion: A Narrative of Aboriginal and Torres Strait Islander People with a Disability (First People Disability Network, 2018). 87  Ibid. 88  Richard Roberts, Rhys Jones and M.A. Smith, ‘Optical Dating at Deaf Adder Gorge, Northern Territory, Indicates Human Occupation between 53,000 and 60,000 Years Ago’ (1993) 37(1) Australian Archaeology 58. 89  Ibid. 90  King and Knox, ‘Negotiating Disability’ (2013) at 739. 84 85

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to it. To extend this further, given that, within Australia at least, the traditional culture is now not the predominant culture (as a result of colonialisation), the introduction of a concept such as ‘disability’ is another example and reality of the dominant culture continuing to override and dominate the traditional one and the traditional culture being further eroded. The issue becomes more complex when one considers that First Nations Peoples worldwide often walk two cultures: their own and the dominant culture that they live in. For Australia’s First Nations People, the issue is no different, with some being less knowledgeable of their culture and living in large metropolitan areas whereas others are far more attuned to and involved in it.91 The question is do we, then, assume and adopt a position that the concept of ‘disability’ is a foreign,92 colonial concept that should not be considered when we are thinking about Australia’s First Nations People, or possibly any First Nations Peoples? Or do we take the broad approach of including First Nations People in our thinking and adopt a one-size-fits-all model in trying to address the disadvantage people with a disability face within the norms of the dominant culture? One could argue that the notion of people with a disability being disadvantaged at all is still not addressing the inherent issue of the dominant culture’s view overriding the older but colonised culture; after all, if a culture has no word for ‘disability’ in its language it is likely that it is not a concept it works to or with but rather an issue it normalises. The authors have taken a broad approach, mindful that there is no homogenous community of First Nations People across Australia, but rather hundreds of language groups and, within at least some of those groups, multiple concepts, notions and ideas of the appropriate response. After all, all peoples, First Nations and others, are inherently diverse.93 Knowing that each person can opt out of any programme that the Government makes available to all citizens, we have chosen to take a broad approach that includes First Nations People in the discourse, notwithstanding that for many a focus on disability is not traditional or culturally normal. 11.4.2.2  Systemic Problems, Particularly Remoteness As noted, Australia’s First Nations people, the Aboriginal and Torres Strait Islander people, have a proud history estimated to be at least 60,000 years old,94 with evidence that in at least parts of what is now Australia, the concept of disability did not exist before the arrival of Western culture. Against this background, disability policy that impacts First Nations People has been shaped by two strategic policy frameworks: ‘Closing the Gap on Indigenous

 See, for instance, UN, State of the World’s Indigenous Peoples, UN Doc. ST/ESA/328 (2009).  Avery, Culture Is Inclusion (2018). 93  Kerry Taylor and Paulin Guerin, Health Care and Indigenous Australians: Cultural Safety in Practice (Palgrave Macmillan, 2nd ed., 2014). 94  See s. 4.2.1. 91 92

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Disadvantage’95 and the ‘National Disability Strategy’.96 Australia’s First Nations People are 2.1 times more likely to have a disability than a non-First Nations People person, with 38% of First Nations People reporting they have a disability and 8% having a profound or severe disability.97 The most recent report on the state of the Disability Sector underscores that, out of the more than 435,000 NDIS plans approved, 6.57% (28,599) are for First Nations People.98 There are two issues with these numbers. The first is that the cohort of Australians who identify as First Nations People is 3.3% of the total population.99 Second, the approval of NDIS plans does not mean that people can, or do, utilise available funds. In fact, the National Disability Insurance Agency’s 2019 Report on First Nations People participation states that First Nations People are utilising 60% of their plans, while non-First Nations People utilise 67%, resulting in only 16,500 First Nations People with active NDIS plans.100 Confirming this, the 2020 State of the Disability Sector Report affirms that, at least in the Northern Territory and Queensland, utilisation of the NDIS plan is low, that is, the usage of funds made available by the approved plans is scarce. Additionally, large areas and distances to be travelled to deliver services to those in remote communities make it difficult for people with a disability and their (potential) providers to utilise the NDIS.101 The financial viability of delivering services in those circumstances in a free market environment makes it highly unlikely that providers will take up the challenge, especially when demand outstrips supply of allied health services and in a free market environment service providers are more likely to look for and work with ‘low hanging fruit’, that is, with those people who are easier to work with and for whom income (profits) are higher. The authors of this chapter do not blame the providers for taking this approach: it is a logical one when considering how to maximise income and minimise costs in a free market space. The 2019 NDIS Report identifies in a number of key metrics that there are disparities between First Nations People and non-First Nations People (Table 11.3). The rate of people exiting the NDIS due to death is higher for First Nations People (than non-­First Nations People) aged 15–34 and 45 and over, while it is lower for all other age groups.102 Critically, on average, First Nations People participating in the  Australian Government, Closing the Gap on Indigenous Disadvantage: The Challenge for Australia (2009) http://www.dss.gov.au/sites/default/files/documents/05_2012/closing_the_ gap.pdf. 96  Council of Australian Governments, National Disability Strategy 2010-2020 (2011). 97  Australian Bureau of Statistics, National Aboriginal and Torres Strait Islander Health Survey (2019) https://www.abs.gov.au/statistics/people/aboriginal-and-torres-strait-islander-peoples/ national-aboriginal-and-torres-strait-islander-health-survey/latest-release. 98  NDIS, Aboriginal and Torres Strait Islander Participants, 30 June 2019, at 33. 99  Australian Institute for Health and Welfare, Profile of Indigenous Australians, 11 September 2019, https://www.aihw.gov.au/reports/australias-welfare/profile-of-indigenous-australians. 100  NDIS, Aboriginal and Torres Strait Islander Participants (2019) at 9. 101  NDS, State of the Disability Sector (2020) at 41 and 41. 102  NDIS, Aboriginal and Torres Strait Islander Participants (2019) at 14. 95

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Table 11.3  Summary of data on the NDIS and Australian First Nations People Category Aged 0–24 Autism as primary disability Intellectual disability as primary disability Residing in major city Residing in remote or very remote region

First Nations peoples 65% 28% 30%

Other participants 54% 31% 27%

43% 11%

68% 1%

Source: (NDIS Aboriginal and Torres Strait Islander Report 2019) National Disability Insurance Agency

NDIS receive approximately 1% lower payments on active plans, with low plan utilisation, despite average committed support for First Nations People being higher than for non-First Nations People.103 First Nations People participating in the NDIS have lower levels of employment after two years in the scheme, that is, 18%, compared with 22% for non-First Nations People, for those aged 15–24, and 12% for First Nations People, compared to 25% for non-First Nations People, aged 25 and over.104 The report referred to in this section does not discuss or proffer any theories or understanding of why the disparities exist. However, there are several issues openly discussed within the sector at this time. In addition to the notion of ‘low-hanging fruit’, non-First Nations People organisations often do not use culturally appropriate processes to engage with First Nations People and their organisations. In fact, For-Profit and Not-for-Profit organisations are more likely to enter a community or locale and act as they do in large cities with non-First Nations People without first establishing a relationship, which is a key element of working with First Nations People. Leslie points out that First Nations People often do not feel welcome in non-­ First Nations organisations, often having to engage with non-First Nations People who are not culturally sensitive or aware.105 Furthermore, many First Nations People and potential clients of the NDIS live in areas to which it is more costly to provide services, either because of travel and accommodation costs or poor internet infrastructure. For the NDIS to be more effective with Australia’s First Nations People, more needs to be done by the National Disability Insurance Agency (‘NDIA’) and the sector to ensure culturally appropriate service delivery and a better understanding of the proper ways of engaging with First Nations People. Additionally, there may be need for other incentives, within the current free market environment, to encourage (culturally sensitive) providers to engage with First Nations People where they are  Ibid., at 9.  Ibid. at 73. 105  Lana Leslie, Dhiiyaan Ngay Kamilaroi, Winangaldanha Ngaya Nginaaynya (My Kamilaroi Family, I Hear You): Physical Activity, Ageing and the Places of Freedom in a Kamilaroi Family (Macquarie University, 2014) http://hdl.handle.net/1959.14/1270121. 103 104

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located. To its credit, in 2017, the NDIA published its ‘Aboriginal and Torres Strait Islander Engagement Strategy’.106 The document was developed through collaboration, ongoing interaction and engagement with Australia’s First Nations Peoples. In acknowledging that the First Nations population is made up of numerous smaller communities and that a ‘one size fits all’ approach would not work, the NDIA claims a ‘community by community approach that will involve building community capability and capacity to develop local solutions’.107 With over 250 First Nations language groups in Australia, the NDIA has committed to a number of principles, including: (a) centrality of First Nations Country, Culture and Community to policies that impact First Nations Peoples with a disability; (b) affording First Nations Peoples and people with disability equal rights as other Australians; (c) provision of opportunities for specialist providers to cater specialised support based on the needs of First Nations Peoples with disability and improved access to providers as well as promotion of culturally appropriate practices; (d) addressing the impact of disability as a matter of course for all policies affecting First Nations People; (e) significant engagement with Aboriginal and Torres Strait Islander peoples with disability; and (f) improving evidence for practices addressing Aboriginal and Torres Strait Islander peoples with disability, including greater community-driven research, based on the interests of those with lived experience of disability and community members.108 It remains to be seen whether the NDIA and its Engagement Strategy will be enough to ensure full engagement by and with the First Nations People of Australia. One thing is certain though: the First Nations People of Australia who have a disability are part of the most marginalised sub-group of people who have a disability. In light of this, does the NDIS address Australia’s international and domestic responsibilities as outlined in various international agreements and strategies? The 2019 Observations of the CteRPD on the second and third combined Report of Australia under the CteRPD underscore that the NDIS does not provide persons with disabilities from culturally and linguistically diverse backgrounds, particularly First Nations People, with equal opportunities, as compared to other people.109 Furthermore, the Committee highlights the inaccessibility of the Scheme, owing to a lack of services in remote areas.110 The Observations also recommend that Australia involve First Nations People with disabilities and their representative organisations in the designing, implementation, monitoring and evaluation of the Australian Government Plan to Improve Outcomes for Aboriginal and Torres Strait Islander People with Disability.111 In fact, according to the Committee, First Nations People with disabilities are ‘particularly disadvantaged’ and ‘often not consulted on

 NDIS, Aboriginal and Torres Strait Islander Engagement Strategy (2017).  Ibid., at 6. 108  Ibid., at 8. 109  CteRPD, Concluding Observations, CRPD/C/AUS/CO/2-3 (2019) at para. 5. 110  Ibid. 111  Ibid., at para. 8. 106 107

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matters that affect them’, whereby complaint mechanisms under the law, particularly the Disability Discrimination Act 1992 (Cth), have proven to be fundamentally inaccessible.112 Within this framework, a reportedly low percentage of women with disabilities coming from First Nations backgrounds have access to services under the NDIS.113 Moreover, the Observations highlight a lack of adequate funding and resources for culturally suitable support for First Nations children with disabilities and their families.114 Inter alia, persons with disabilities within Australia’s First Nations communities have a significantly lower life expectancy as compared to the rest of the population, owing, among other reasons, to suicidal ideation.115 First Nations People are also overly represented among persons deprived of liberty following forced treatment.116 In sum, there are problems across the spectrum of disability policies concerning the situation of First Nations People in Australia that the NDIS and other legislative instruments have not yet been able to address adequately. The NDIS gives people with a disability some choices and is certainly an improvement on what Australia had in the past, but there remains more to be done to improve the situation.

11.5  I nclusiveness in Middle-East Countries: Substance and Procedure Reportedly, in Middle-Eastern countries, which still largely have a non-secular structure, persons with disabilities face major barriers to integration in society in light of basic demographic and socio-economic factors. Social stigma, physical barriers in accessing buildings and transport, and problems in accessing employment, health services, and education are critical elements triggering unequal conditions.117 There is also a fundamental lack of availability of reliable information, with striking differences between national disability prevalence rates. To this end, some national surveys overlook essential data on issues such as institutionalisation and stigma attached to disability, which hampers the adoption of adequate strategies.118 Available information reveals that people with a disability have lower educational attainment, economic participation and remuneration than the rest of the population, and spend more on healthcare.119 On average, the situation is aggravated for women  Ibid., at para. 9.  Ibid., at para. 10. 114  Ibid., at para. 14. 115  Ibid., at para. 19. 116  Ibid., at 26. 117  ESCWA, Disability (2018) at 46. 118  Ibid. 119  Ibid. 112 113

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with disabilities and people with a disability living in rural areas and is likely to worsen because of the ageing of the population and an increase in regional conflicts.120 Whilst Arab States have developed efforts to address disparities, along the lines of the CRPD,121 the concluding observations of the CteRPD on key countries in the region reveals that much still has to be done, with the necessity of investing in education emerging as a key priority.122 The 2015 Concluding Observations of the CteRPD on Qatar underscores that the country has undertaken important steps in the implementation of the CRPD, particularly via the adoption of the National Development Strategy 2011–2016.123 Nonetheless, the Observations highlight critical deficiencies in the system across the spectrum of disability rights. Notably, the Committee observes that Qatar failed to provide reasonable accommodation to all students with disabilities in mainstream schools, within the framework of the lack of a strategy for inclusive quality education.124 According to the Committee, mainstream education is only available to students with certain kinds of impairments, whereas others attend segregated facilities.125 Furthermore, there are high rates of illiteracy among older adults with a disability, who do not have the opportunity to access vocational training and tertiary education.126 In the area of employment, the Observations underscore the absence of effective inclusive work policies and a low employment rate for persons with disabilities, despite the adoption of a quota system, with particular regard to women, whose employment may also be subject to the consent of a male guardian.127 The 2019 Concluding Observations of the CteRPD on the periodic report of Saudi Arabia determine that the country has undertaken important steps to implement adequate inclusive policies, through initiatives such as the 2016 Saudi Vision 2030 and the establishment in 2018 of the Authority for the Welfare of Persons with Disabilities.128 However, there are systemic concerns, as the country is lagging behind in several respects throughout the spectrum of disability rights. Notably, the State tends to act without appropriate consultation of relevant organisations.129 Furthermore, key legislation, including the Basic Law of Governance, the Disability Care Act, the Labour Law and the Charter on the Authority for the Welfare of People with Disabilities are all still grounded in a charity approach to disability that is inconsistent with the CRPD: this does not acknowledge environmental barriers  Ibid., at 47.  Ibid. 122  Ibid. 123  CteRPD, Concluding Observations on the Initial Report of Qatar, UN Doc. CRPD/C/QAT/ CO/1, 2 October 2015, at 1. 124  Ibid, at para. 43. 125  Ibid. 126  Ibid. 127  Ibid, at para. 49. 128  CteRPD, Concluding Observations on the Initial Report of Saudi Arabia, CRPD/C/SAU/CO/1, 13 May 2019, at para. 4. 129  Ibid, at para. 5. 120 121

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hampering participation on a non-discriminatory basis.130 This results, for instance, in the practice of placing children with disabilities in segregated educational settings, which leads to exclusion from the mainstream educational system based on impairment.131 There are also non-inclusive work policies in place, with a lack of sanctions and information in case of non-compliance with a quota-system under labour law, requesting employers with 25 or more employees to allocate 4% of posts to persons with disabilities.132

11.6  Conclusion This chapter considered the situation with regard to disability in the Asia-Pacific region before looking at specific countries, with a particular focus on the recent introduction of the NDIS in Australia, and its impact on Australia’s First Nations People, as compared to the disability policies of key regional players such as China, the Philippines and Middle Eastern countries. Our analysis reveals that, whilst some regulatory coherence emerges, particularly owing to overarching initiatives, notably, the Incheon Strategy of the ESCAP, the absence of a comprehensive human rights architecture makes it difficult to harmonise policies and legislation in the region. There is a disparity among States in the implementation of disability policies, which is deepened by factors such as the divide between developed and developing countries and the secular or non-secular nature of States. On the one hand, in Australia, the NDIS initiative is a significant improvement in the implementation of the CRPD, but there is work to do towards ensuring equality of access as between participating First Nations and non-First Nations People. On the other hand, China and the Philippines have not yet implemented a full transition to the social model of disability. Likewise, the charity approach is still prevalent in Qatar and Saudi Arabia, which, despite progress in the implementation of the CRPD, are far from adopting disability policies that allow non-discriminatory inclusive education and access to work for persons with disabilities. Against this background, different approaches to the concept of ‘disability’ make it difficult to outline a common regional strategy. The authors have tried to show that the absence of a single definition complicates our understanding of the issues involved. With specific regard to the situation in Australia, in some traditional First Nations cultures the idea of focusing on disability as what a person cannot do simply does not exist. Rather, the focus is on what the person can still do (similar to the ‘Don’t dis my ability’ campaign that was implemented in Australia some years ago)

 Ibid.  Ibid, at para. 49. 132  Ibid., at para. 47. 130 131

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along the lines of the concept of ‘different ability’, which underpins conceptually the rules of the CRPD, but not yet its wording.

References133 Documents APF. 2017. Human Rights and Disability: A Manual for National Human Rights Institution, https://www.asiapacificforum.net/resources/human-­rights-­and-­disability-­manual-­nhris. ASEAN. 2011. Bali Declaration on the Enhancement of the Role and Participation of the Persons with Disabilities in ASEAN Community. ASEAN. 2013. Mobilisation Framework of the ASEAN Decade of Persons with Disabilities, 2011–2020. AU. 2011. Productivity Commission Inquiry Report, Disability Care and Support. AU. 2013. National Insurance Disability Scheme Act, n. 20. Australian Bureau of Statistics. 2019. National Aboriginal and Torres Strait Islander Health Survey, https://www.abs.gov.au/statistics/people/aboriginal-­and-­torres-­strait-­islander-­peoples/ national-­aboriginal-­and-­torres-­strait-­islander-­health-­survey/latest-­release. Australian Government, 2009. Closing the Gap on Indigenous Disadvantage: The Challenge for Australia, http://www.dss.gov.au/sites/default/files/documents/05_2012/closing_the_gap.pdf. Australian Institute for Health and Welfare. 2019. Profile of Indigenous Australians, 11 September 2019, https://www.aihw.gov.au/reports/australias-­welfare/profile-­of-­indigenous-­australians. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008. Council of Australian Governments. 2011. National Disability Strategy 2010–2020. CteRPD. 2012. Concluding Observations on the Initial Report of China, UN Doc. CRPD/C/CHN/ CO/1, 15 October 2012. CteRPD. 2015. Concluding Observations on the Initial Report of Qatar, UN Doc. CRPD/C/ QAT/CO/1,. CteRPD. 2018. Concluding Observations on the Initial Report of the Philippines, UN Doc. CRPD/C/PHL/CO/1. CteRPD. 2019. Concluding Observations on the Combined Second and Third Periodic Reports of Australia, UN Doc. CRPD/C/AUS/CO/2-3. CteRPD. 2019. Concluding Observations on the Initial Report of Saudi Arabia, CRPD/C/ SAU/CO/1. ESCWA and League of Arab States. 2018. Disability in the Arab Region: An Overview. ESCWA, Disability in the Arab Region 2018, UN Doc. E/ESCWA/SDD/2018/1. International Foundation for Electoral Systems. 2017. Advancing Disability Rights in Southeast Asia through Regional Network of Advocates, https://www.ifes.org/news/ advancing-­disability-­rights-­southeast-­asia-­through-­regional-­network-­advocates. NDIS. 2017. Aboriginal and Torres Strait Islander Engagement Strategy. NDIS. 2019. Aboriginal and Torres Strait Islander Participants. NDS. 2020. State of the Disability Sector Report. UN ESCAP. 2002. Millennium Framework for Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the Pacific. UN ESCAP. 2012. Asian and Pacific Decade of Persons with Disabilities, 2013–2022, Res. 68/7.

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UN ESCAP. 2012. Incheon Strategy to ‘Make The Right Real’ for Persons with Disabilities in Asia and the Pacific, ST/ESCAP/2648. UN ESCAP. 2017. Building Disability-Inclusive Societies in Asia and the Pacific: Assessing Progress of the Incheon Strategy, Report. UN ESCAP. 2018. Disability in Asia and the Pacific: The Facts, Report. UN ESCAP. 2019. Disability at a Glance 2019: Investing in Accessibility in Asia and the Pacific. UN ESCAP. 2019. Report on the Fifth Session of the Working Group on the Asian and Pacific Decade of Persons with Disabilities, 2013–2022, UN Doc. ESCAP/75/7. UN ESCAP. 2020. Report on the Sixth Session of the Working Group on the Asian and Pacific Decade of Persons with Disabilities, 2013–2022, UN Doc. ESCAP/77/14. UN Office for Disaster Risk Reduction. 2015. Sendai Framework for Disaster Risk Reduction 2015–2030. UN. 2009. State of the World’s Indigenous Peoples, UN Doc. ST/ESA/328.

Bibliography Avery, S. (2018). Culture is inclusion: A narrative of aboriginal and Torres Strait Islander people with a disability. First People Disability Network. De Beco, G. (2021). Disability in international human rights law. Oxford University Press. Goggin, G., & Newell, C. (2005). Disability in Australia: Exposing a social Apartheid. UNSW. King, J., & Knox, M. (2013). Negotiating disability and colonisation: The lived experience of indigenous Australians with a disability. Disability and Society, 29(5), 738. Leslie, L. (2014). Dhiiyaan Ngay Kamilaroi, Winangaldanha Ngaya Nginaaynya (My Kamilaroi family, I hear you): Physical activity, ageing and the places of freedom in a Kamilaroi family. Macquarie University, http://hdl.handle.net/1959.14/1270121. Roberts, R., Jones, R., & Smith, M.  A. (1993). Optical dating at Deaf Adder Gorge, Northern Territory, indicates human occupation between 53,000 and 60,000 years ago. Australian Archaeology, 37(1), 58. Rotinsulu, M. A. (2020). The rights of persons with disabilities: The implementation of SDGs and CRPD in ASEAN Countries, ASEAN Disability Forum. Taylor, K., & Guerin, P. (2014). Health care and indigenous Australians: Cultural safety in practice. Palgrave Macmillan.

Chapter 12

The Asymmetries of Disability Rights Protection in the Inter-American System Ottavio Quirico and Pablo Cristóbal Jiménez Lobeira

Contents 12.1  I ntroduction 12.2  R  egional Instruments: Between the CIADDIS and the CRPD 12.2.1  CIADDIS and CRPD: Significance and Limits 12.2.2  OAS Programs of Action: The Emerging Concept of ‘Inclusive Sustainability’ 12.3  Country Situation 12.3.1  North America 12.3.2  South America 12.4  Enforcing Disability Rights via the IAComHR and IACtHR 12.4.1  Sources: Systemic Limits and Methodology 12.4.2  Jurisprudence 12.5  Conclusion References

 272  273  273  276  278  279  282  286  286  288  291  292

Abstract  Inter-American States were the first to adopt a specific and comprehensive convention in the area of disability: the 1999 Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities (‘CIADDIS’). Most States in the Americas are currently parties to both the CIADDIS and the Convention on the Rights of Persons with Disabilities (‘CRPD’), aiming to develop targeted policies, along the lines of the concept of ‘inclusive sustainability’, which is central to the action of the Organisation of American States. Within this context, two issues emerge where States could do more for respecting, protecting O. Quirico (*) Law School, University of New England, Sydney, Australia Centre for European Studies, Australian National University, Canberra, Australia Law Department, European University Institute, Firenze, Italy e-mail: [email protected]; [email protected]; [email protected] P. C. J. Lobeira Centre for European Studies, Australian National University, Canberra, ACT, Australia e-mail: [email protected] © Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1_12

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and fulfilling the rights of people with disabilities and fully implementing the concept of ‘different ability’. From a socio-economic standpoint, there is a gap between the US and Latin American States, whereby not enough progress has been made with particular regard to independent living and participation in society. Institutionally, the Inter-American system is asymmetrical: as they have no jurisdiction over the CIADDIS and the CRPD, the Inter-American Commission on Human Rights and the Inter-American Court of Human Rights have relied on these conventions to interpret the American Convention on Human Rights and the San Salvador Protocol. The Commission and the Court have thus elaborated on specific aspects of disability rights, notably in light of first- and second-generation human rights, which also apply to States that are not parties to the CIADDIS and the CRPD, particularly the US. However, jurisdictional limitations have prevented a comprehensive approach to the loopholes that affect disability rights in the Americas and the development of a consistent jurisprudence on third-generation disability rights. Keywords  Americas · Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities (‘CIADDIS’) · Convention on the Rights of Persons with Disabilities (‘CRPD’) · North America · South America · Independent living · Participation · Inter-American Commission on Human Rights · Inter-American Court of Human Rights

12.1  Introduction The Inter-American system is the first that adopted a convention specifically addressing the rights of persons with disabilities, rectius, different abilities. On 7 June 1999, the Organization of American States (‘OAS’) approved the Inter-­ American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities (Convención Interamericana para la Eliminación de todas las Formas de Discriminación contra las Personas con Discapacidad; ‘CIADDIS’), via Resolution 1608 (XXIX-O/99) of the OAS General Assembly.1 Currently, most States in the Americas have adhered to the United Nations (‘UN’) Convention on the Rights of Persons with Disabilities (‘CRPD’), which was adopted in 2006.2 The Inter-American normativity on the rights of persons with disabilities therefore sits in the context of the international human rights system: most States in the region are bound by double-layered protection with respect to disability rights. The OAS has played a key role in the development of this framework, with respect to both law-­ making and enforcement.

1  OAS, AG/RES. 1608, XXIX-O/99: CIADDIS, opened for signature June 1999, entered into force 14 September 2001. 2  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 2 May 2008.

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This contribution explores disability rights protection in Inter-American States within the framework of the OAS and in the context of the obligations established under the CIADDIS and the CRPD. Following the classical division between ‘primary’ and ‘secondary’ rules,3 the contribution first sketches key regulatory initiatives in the area of disability rights and second considers compliance and enforcement mechanisms. Along these lines, the first section illustrates similarities and differences between the CIADDIS and the CRPD and, within this framework, essential regional regulatory initiatives. The second section assesses disability rights in select countries, based on periodic reports under the CIADDIS and CRPD. The section examines the four largest countries by population in the region, notably, the United States of America (‘US’), Mexico, Brazil and Colombia.4 The third section explores the enforcement of disability rights via key cases before the Inter-American Commission on Human Rights (‘IAComHR’) and the Inter-American Court of Human Rights (‘IACtHR’). The purpose is to provide a comprehensive understanding of disability rights in the region and identifying key regulatory problems and ways forward.

12.2  R  egional Instruments: Between the CIADDIS and the CRPD 12.2.1  CIADDIS and CRPD: Significance and Limits States in the Americas are subject to disability regulation on the one hand via instruments under general international law, and on the other via regional instruments adopted in the context of the OAS. Since 1948, the OAS has promoted inter-State cooperation, particularly via its General Assembly, and rights-enforcement, particularly via the IAComHR and IACtHR.  The principal regulatory instrument of the OAS in the area of fundamental rights is the 1969 American Convention on Human Rights (‘ACHR’: also known as the Pact of San José),5 which is complemented by the 1988 San Salvador Protocol on Economic, Social and Cultural Rights (‘SSP’)6 and spells out in detail the 1948 American Declaration on the Rights and Duties of Man (‘ADRDM’).7 The main regulatory instrument promoted by the OAS in the area of disability is the 1998 CIADDIS, whilst the principal general instrument on

 See Hans Kelsen, Pure Theory of Law (tr. Max Knight, Peter Smith, 1967).  List of Countries by Population (Lista de países ordenados por población), December 2019, https://www.populationpyramid.net/es/poblaci%C3%B3n-por-pais/2020. 5  Opened for signature 22 November 1969, 1144 UNTS 123, entered into force 18 July 1978. 6  Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights, adopted 17 November 1988, entered into force 16 November 1999. 7  Adopted 2 May 1948. 3 4

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disability under international law to which States in the Americas adhere is the 2006 CRPD. The purpose of the CIADDIS is to afford more specific protection to people with disabilities as compared to general human rights instruments adopted in the context of the OAS. Persons with disabilities represent a specific vulnerable group  – although fundamental rights also address disabled persons, they do not address their particular needs.8 The Convention is an OAS instrument and most OAS Member States are parties to the CIADDIS, which entered into force in 2001 after the necessary number of ratifications was achieved, with the notable exceptions of Canada and the US.9 The CIADDIS is a short text including fourteen articles, exclusively focusing on the elimination of discrimination against persons with disabilities, aiming to foster integration in society (Article II). Under Article I, ‘disability’ is defined as ‘a physical, mental, or sensory impairment, whether permanent or temporary, that limits the capacity to perform one or more essential activities of daily life’, which ‘can be caused or aggravated by the economic and social environment.’ Under the same provision, ‘discrimination’ is defined as ‘any distinction, exclusion, or restriction’ based on a disability, which affects the enjoyment of fundamental rights and freedoms (Article I(II)(a)). Disability is simultaneously considered a differential situation that may justify differential treatment (Article I(II)(b)). Within this framework, States commit to adopting the necessary policies and legislation to, inter alia, make employment, housing, education and infrastructure accessible (Article 3(1)(a)-(c)). The Convention therefore outlines general objectives, giving States a wide margin of discretion as concerns implementation. For the purpose of achieving the aims of the CIADDIS, States commit to cooperation (Article IV), involving relevant representative organisations in the development, execution, and evaluation of disability measures and policies (Article V). Monitoring is ensured via the institution of a Committee for the Elimination of All Forms of Discrimination against Persons with Disabilities (‘CEDDIS’), comprising of a representative appointed by each State Party (Article VI(1)). States submit periodic reports to the CEDDIS on measures taken to implement the CIADDIS and the Committee elaborates conclusions, observations and suggestions for the ‘gradual fulfilment’ of the Convention (CIADDIS Article VI(5)). The Convention has indefinite validity in time (Article XIII) and contains a ‘most-favourable-treatment’ clause under Article VII such that no provisions under the Convention can be interpreted so as to restrict the enjoyment of the rights of persons with disabilities under customary or treaty law. Similar to the CIADDIS, the CRPD aims to eliminate discrimination against persons with disabilities and to achieve full integration in society. Most OAS Member States are parties to the CRPD, which entered into force in 2008, again

8  Monika Domańska, ‘People with Disabilities as a Vulnerable Group: The Concept of Protection of the Rights of Vulnerable Groups’ (2018) 23(4) Białostockie Studia Prawnicze 25. 9  OAS, Multilateral Treaties, American Convention on Human Rights, B-35, https://www.oas.org/ dil/treaties_B-32_American_Convention_on_Human_Rights_sign.htm.

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with the notable exception of the US.10 Whilst the CRPD does not define the notion of ‘disability’, Article 1 clearly relinquishes the medical approach to disability and fosters a social paradigm, based on non-discrimination (Article 3(b)), aiming to achieve full and effective participation in society for the disabled on an equal footing with others (Article 5). In this respect, the CRPD builds on the CIADDIS to elaborate more advanced protection, to the extent that it grants persons with disabilities specific rights and recognises the rights of specific groups, particularly, women and children.11 Fundamentally, the CRPD has a tripartite structure, along the lines of the trajectory that links first-, second- and third-generation human rights.12 Thus, CRPD Articles 10–23 and 29 regulate the civil and political rights of persons with disabilities, such as the right to protection and safety in situations of risk, including armed conflicts and humanitarian emergencies. Articles 24–28 and 30 cover economic, social and cultural rights, for instance, the right to work. Furthermore, the Preamble (g) posits the concept of ‘inclusive sustainability’, along the lines of the notion of ‘sustainable development’ proposed in the Brundtland Report.13 Institutionally, the CRPD is implemented via the Committee on the Rights of Persons with Disabilities (‘CteRPD’), which elaborates recommendations based on State periodic reports (CRPD Article 35) and individual complaints (CRPD Optional Protocol,14 Articles 1–2). Furthermore, the Convention compels States to establish ad hoc mechanisms for implementing disability rights and monitoring implementation (CRPD Article 33). The CIADDIS and the CRPD aim to establish a specific regulatory framework for persons with disabilities (lex specialis), beyond the obligations outlined via general human rights conventions (lex generalis), such as the ACHR and both the 1966 International Covenant on Civil and Political Rights (‘ICCPR’)15 and International Covenant on Economic, Social and Cultural Rights (‘ICESCR’).16 However, unlike the ACHR, which is subject to adjudication via the IAComHR and IACtHR, the CIADDIS and the CRPD are not subject to supranational adjudication mechanisms. There is therefore a discrepancy between primary and secondary rules on disability in the inter-American system, whereby the CIADDIS and the CRPD aim to advance disability rights in the region, but do not have ‘teeth’ and can only be relied upon by the IAComHR and IACtHR as interpretative documents in applying the ACHR.

 CRPD, UNTS, https://treaties.un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_no=IV15&chapter=4&clang=_en. 11  Diana Guarnizo-Peralta, ‘Disability Rights in the Inter-American System of Human Rights: An Expansive and Evolving Protection’ (2018) 36(1) Netherlands Quarterly of Human Rights 43, 45–46. 12  See Burns H. Weston, ‘Human Rights’ (1984) 6(3) Human Rights Quarterly 257, at 264. 13  World Commission on Environment and Development, Our Common Future, Report (1987). 14  Opened for signature 30 March 2007, 999 UNTS 3, entered into force 3 May 2008. 15  Opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976. 16  Opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. 10

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12.2.2  O  AS Programs of Action: The Emerging Concept of ‘Inclusive Sustainability’ Within the context of the obligations contracted under the CIADDIS and the CRPD, the OAS has adopted relevant measures to implement disability rights. Therefore, whilst they are not strictly speaking justiciable, these Conventions have provided effective guidance in outlining disability policies for States in the Americas. The general guidelines for disability policies in the inter-American system have been defined via decennial implementation plans, aiming to facilitate the application of the CIADDIS and the CRPD. On 6 June 2006, the fourth plenary Assembly of the OAS adopted the Declaration on the Decade of the Americas for the Rights and Dignity of Persons with Disabilities for the period 2006–2016.17 The Declaration underscored the need to adopt hemisphere-­wide measures and strategies to promote first-, second- and third-­ generation fundamental rights for people with disabilities.18 It also declared the period 2006–2016 a decade for disability rights, aiming to ensure equality, dignity, and participation for people with disabilities in society.19 Within this framework, in 2007, the OAS Assembly adopted a Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2006–2016).20 The Program aimed at ensuring substantial progress in creating an inclusive society based on the full and equal exercise of human rights and fundamental freedoms for persons with disabilities, including concrete actions, ranging from health plans to ensuring political participation and employment.21 On 14 June 2016, the OAS General Assembly adopted a Resolution on the Extension of the Decade of the Americas for the Rights and Dignity of Persons with Disabilities for the period 2016–2026,22 aiming at consolidating the previous Program of Action. The resolution restates the commitments under the 2006–2016 Program, prioritising universal accessibility, creating statistical records on disabilities as essential mechanisms for inclusive public policies, addressing social protection and affirming a community-based approach to development. A trajectory thus

 OAS, AG/DEC. 50 (XXXVI-O/06).  Ibid., at para. 2. 19  Ibid., at para. 3. 20  OAS, AG/RES. 2230 (XXXVI-O/06). 21  Permanent Council of the OAS, Committee on Juridical and Political Affairs, Working Group to Prepare a Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2006–2016), http://www.oas.org/consejo/CAJP/disabilities.asp. 22  OAS, Declaration on Extension of the Decade of the Americas for the Rights and Dignity of Persons with Disabilities and Consolidation of the Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2016–2026), AG/DEC. 89 (XLVI-O/16). 17 18

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emerges, whereby the concept of ‘inclusive sustainability’ promoted by the UN23 assumes a central role in harmonising disability policies in the Americas.24 As a follow-up to the extension of the decade on the rights of persons with disabilities, in 2018 the OAS General Assembly adopted a second Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities,25 outlining policy guidelines for implementing the rights of persons with disabilities in Inter-American States until 2026. In particular, the Program commits States to harmonising domestic legislation with the standards of international human rights law in this area, to the utmost of available resources, notably in line with CRPD Article 12 on equal legal capacity.26 Addressing areas that span education, work, accessibility and independent living, the Program again outlines concrete actions, such as the need to undertake public awareness-raising campaigns and to implement procedures enabling people with disabilities to provide free and informed consent for medical treatment.27 In keeping with the extension of the Decade for the Rights and Dignity of Persons with Disabilities, a key development in the 2016–2026 Programme is the centrality of the concept of inclusive sustainability. The 2016–2026 Program embeds a preliminary reference to the 2015–2030 Sustainable Development Goals (‘SDGs’)28 and includes the concept of ‘sustainability’ as a cross-cutting issue throughout the different components of the Program. Strategically, the Program provides that States should promote training and capacity-building for governmental institutions in implementing international obligations relating to the SDGs associated with persons with disabilities (Strategy 5).29 Fundamentally, action on development, well-­ being and social inclusion is structured around the participation of persons with disabilities in social and economic development, supporting the productive and sustainable participation of people with disabilities in the economic system (Action 9(a)).30 The Program also aims to ensure that international cooperation involving resources from the Inter-American system or multilateral organisations promotes the inclusive and sustainable development of persons with disabilities (Action 15(f)).31 More specifically, within the context of the policies on participation in  UN, Sustainable Development Goals, https://sdgs.un.org/goals; OHCHR, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc. A/HRC/44/30 (2020). 24  See World Bank, Eighty-five Million Reasons to Prioritize Persons with Disabilities during Disasters in Latin America and the Caribbean, 3 December 2019, https://www.worldbank.org/en/ news/feature/2019/12/03/85-million-reasons-to-prioritize-persons-withdisabilities-during-disasters-in-­­latin-america-and-the-caribbean. 25  OAS, AG/RES. 2230 XXXVI-O/06. 26  Ibid., at 8–9. 27  Ibid., at 18 ff. 28  Ibid., at 5. 29  Ibid., at 54. 30  Ibid., at 40. 31  Ibid., at 51. 23

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sport, cultural and leisure activities, the Program envisages the adoption of National Action Plans (‘NAPs’), fostering the ‘sustainability of high-performance sport entities for persons with disabilities’ (Action 8(d)).32

12.3  Country Situation Taking into account key political criteria, such as gross domestic product (‘GDP’), democracy and the rule of law, critical differences emerge in the disability policies of States in the Americas.33 Whilst countries in Latin America have established ad hoc institutions to address the needs of people with disabilities, particularly via inter-sectoral commissions and secretariats, their effective implementation is often hampered by a lack of adequate financial resources.34 Besides the divide between OAS Member States in the Northern and Southern hemispheres,35 key factors such as the territory and population size impact the definition of disability policies.36 In this context, economic inequality is a fundamental obstacle to the achievement of sustainable inclusivity: people with disabilities experience high levels of poverty for reasons such as not having paid work and facing additional costs associated with disability (Fig. 12.1).37

 Ibid., at 39.  See, for instance, Enrique Peruzzotti and Catalina Smulovitz (eds.), Enforcing the Rule of Law: Social Accountability in the New Latin American Democracies (University of Pittsburgh Press, 2006); Beth Harry, Childhood Disability, Advocacy, and Inclusion in the Caribbean: A Trinidad and Tobago Case Study (Palgrave McMillan, 2020). 34  See Heidi Ullman, ‘Disability and Public Policy: Institutional Policies and Challenges in Latin America’, in Rodrigo Martínez (ed.), Institutional Frameworks for Social Policy in Latin America and the Caribbean (UN, 2018) 255, at 262 and 266. 35  On geological, cultural and political grounds, it is disputed whether Northern and Central America and the Caribbean, on the one hand, and South America, on the other hand, are two ‘continents’ or one ‘continent’. The convention in most English-speaking countries seems to be that they are two different continents, whereas in non-English-speaking Europe and Latin America the one-continent view prevails. The view implicit in the OAS Charter refers to the whole region as ‘America’ and ‘the continent’ in all official versions (English, French, Portuguese and Spanish): Charter of the Organization of American States, opened for signature 30 April 1948, 119 UNTS 1609, entered into force 13 December 1951. 36   Rodrigo Martínez and Carlos Maldonado Valera, ‘Institutional Framework for Social Development’, in Rodrigo Martínez (ed.), Institutional Frameworks (2018) 21, at 29 ff. 37  Monica Pinilla-Roncancio, ‘Disability and Social Protection in Latin American Countries’ (2015) 30(7) Disability & Society 1005, at 1018. 32 33

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World Rank

279

United States

Brazil

Mexico

Colombia

Economic Equality38

57th

88th

93rd

100th

Transparency39

25th

94th

124th

92th

Democracy40

25th

49th

72nd

46th

Rule of Law41

21st

67th

104th

77th

Fig. 12.1  Summary of key political drivers in the largest countries by population in America

12.3.1  North America Among North American countries, the US is a crucial economic and political player.38 As a non-signatory to the CIADDIS which has not ratified the CRPD, it has accordingly submitted no formal reports on compliance under either convention and has received no feedback from either the UN or OAS. Whilst the US played a crucial role in the promotion of the CRPD,39 it only became a signatory in 200940 and is not yet a party because of a negative vote in the Senate in 2012 which was grounded, among other reasons, in resistance to ceding sovereignty to the UN on disability rights matters.41 Despite this lack of formal international commitment, responding to the first OAS Program of Action in October 2009, the US Department of Health and Human Services prepared a report on the rights of persons with disabilities.42 The report

 Congressional Research Services, US Role in the World: Background and Issues for Congress, 19 January 2021; World Bank, US- GDP, https://data.worldbank.org/indicator/NY.GDP.MKTP. CD?name_desc=true&locations=US. 39  See how the US promoted the creation of the CRPD, which was modelled after its own disability law (American Disability Act, 1990), in Arlene S. Kanter, ‘Let’s Try Again: Why the United States Should Ratify the United Nations Convention on the Rights of People with Disabilities’ (2019) 35(1) Touro Law Review 301, at 302. 40  White House, Office of the Press Secretary, Remarks by the President on Signing of UN Convention on the Rights of Persons with Disabilities Proclamation, 24 July 2009, available at https://obamawhitehouse.archives.gov/realitycheck/the-press-office/remarks-presidentrights-persons-with-disabilities-proclamation-signing. 41  Rosalind S.  Helderman, Senate Rejects Treaty to Protect Disabled around the World, 4 December 2012, https://web.archive.org/web/20130921055440/https://articles.washingtonpost. com/2012-12-04/politics/35624605_1_treaty-disabled-children-americans-with-disabilities-act. 42  US, Progress Report on the Implementation of the Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities 2006–2016 (2009), https://www. oas.org/es/sedi/ddse/paginas/documentos/discapacidad/PAD/1er_InformePAD/Estados%20 Unidos.pdf; Second Meeting of Directors and Public Policy Leaders for People with Disabilities (Segunda Reunión de Directores y Formuladores de Políticas Públicas para Personas con Discapacidad), August 2010, https://www.oas.org/es/sedi/ddse/paginas/index-4_pda_reunion_ II.asp. 38

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positively highlights the adoption of key regulatory instruments, particularly, the Traumatic Brain Injury Act 2008 and the ‘Pending Health Reform Proposals and Medical Equipment Accessibility and Personnel Cultural Competence Senate Bills’.43 Addressing CRPD Articles 31 (Statistics) and 32 (International Cooperation), the report underscores that the US acts as the Secretariat for the International Washington Group on Disability Statistics.44 The document also reports an expenditure benefiting persons with disabilities of over $200  billion (USD) in Medicaid services destined to approximately twelve million people under CRPD Article 3.45 It also indicates support for institutionalised people with disabilities to move to another institution when necessary or live independently in society, according to CRPD Article 19, and fighting discrimination in the workplace and supporting the acquisition of skills for work and economic independence, in line with CRPD Article 27.46 Admittedly, the report is provisional, partial (only concerning health but no other disability rights, for instance, education, equality, accessibility, access to justice or participation in political and public life), and not open to scrutiny from the CRPD or CIADDIS committees. Therefore, while it provides a glimpse into the situation in the US, it is not a solid basis for comparison with the other three OAS Member States in America. Considering the situation in Mexico, another key player in the region with the second largest GDP in Latin America,47 assessing their first initial report under the CRPD48 in 2014, the CteRPD highlighted a shift in the perspective of the National Council for Persons with Disabilities from a health-based model to a human rights-­ based approach, via the reform of the Federal Act on the Prevention and Elimination of Discrimination.49 The Committee invited Mexico to eliminate pejorative terminology about persons with disabilities from State legislation under CRPD Articles 1–4 and to eradicate discrimination against women with disabilities under CRPD Article 6.50 The Committee also requested improved accessibility as concerns the physical environment, transport, information, communication systems and

 US, Progress Report (2009) at 2.  Washington Group on Disability Statistics, https://www.washingtongroup-disability.com. 45  Ibid., at 15 ff.: Summary of US Department of Health and Human Services’ Programs and Activities Supporting the UN Convention on the Rights of Persons with Disabilities. 46  Ibid. 47  World Bank, GDP – Mexico, https://data.worldbank.org/indicator/NY.GDP.MKTP.CD?locations= MX. 48  Implementation of the Convention on the Rights of Persons with Disabilities, Initial Report of Mexico, UN Doc. CRPD/C/MEX/17, February 2013. Mexico has since submitted another report (in February 2018) for which, however, there is no UN feedback yet. 49  CteRPD, Concluding Observations on the Initial Report of Mexico, UN Doc. CRPD/C/MEX/ CO/1, 27 October 2014, at 1. 50  Ibid., at 1 and 3. 43 44

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technologies, including penalties for non-compliant entities under CRPD Article 9.51 A key critique addresses participation in society; in fact, the Committee requested Mexico to eliminate medical and psychiatric in-patient treatment, detention on grounds of disability and mental health services that are not based on informed consent under CRPD Articles 14 and 19, including targeted sanctions under CRPD Article 15.52 Within this framework, the CteRPD requested that Mexico prevent pregnant women with disabilities from being pressured to undergo abortions, that it punish doctors involved in any such cases, that it investigate judicial and health institutions which enable the forced sterilisation of women with disabilities, and that it ensure that victims have adequate access to justice in line with CRPD Articles 17 and 25.53 Moreover, the government was invited to give persons with disabilities the rights to marry and to have the custody or guardianship of their children, to support mothers with psychosocial disabilities and to enable the placement of abandoned children with disabilities in foster care, rather than institutions, according to CRPD Article 23.54 A further step in the implementation of such rights is the necessity of ensuring education for children with disabilities, accessibility of schools and appropriate training for teachers, in line with CRPD Article 24, as well as boosting access to employment programs for persons with disabilities, protecting them from all forms of exploitation and harassment in the workplace, and implementing public and private sector affirmative action measures, consistent with CRPD Article 27.55 The Committee also underscored the need to eliminate disadvantages faced by abandoned or extremely poor indigenous persons with disabilities under CRPD Article 28.56 At the institutional level, Mexico was invited to establish a system for the compilation, analysis and publication of statistical data in order to adequately implement disability policies and outcomes, in line with CRPD Article 31.57 On a positive note, under the second CIADDIS report,58 in 2016 the CEDDIS highlighted the adoption of several national programs on disability rights, spanning employment, the administration of justice, protection, rehabilitation and social inclusion.59 However, the Committee still expressed concerns regarding schooling,  Ibid., at 3–4.  Ibid., at 6. 53  Ibid. 54  Ibid., at 7–8. 55  Ibid., at 8–9. 56  Ibid., at 9 57  Ibid. 58  Mexico, Second Report under the CIADDIS (Segundo Informe de Cumplimento de los Estados Parte de la Convención) (2016) available only in Spanish at http://www.oas.org/es/sedi/ddse/paginas/txt_discapacidad_segundoinforme.html. 59  CEDDIS, Revision of the Second Report of Mexico (Revisión del Informe de México) (2016) at 5. 51 52

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public and private sector health and employment, participation in recreational and cultural activities, and the social inclusion of indigenous persons with disabilities who live in poverty.60 The Committee also invited Mexico to promote the appreciation of disability rights and of a life free from violence, as well as to adopt universal accessibility standards in the construction and remodelling of buildings.61

12.3.2  South America Within Latin America, Colombia is the fourth largest economy despite its struggle with huge disparities in revenue distribution.62 Even prior to the approval of the CRPD via Law 1346/2009, Colombia had passed comprehensive regulation governing the national disability system via Law 1145/2007.63 Considering the initial report of the country under the CRPD,64 in 2016, the CteRPD commended the adoption of national measures defining the offence of discrimination on grounds of disability, extending reparations to victims of violence and recognising Colombian sign language as the native language of deaf and deaf-blind persons.65 Similar to Mexico and Brazil,66 the CteRPD recommended the use of a human rights-based inclusive approach to disability, instead of a medical paradigm, giving persons with disabilities full legal capacity and removing all derogatory language from laws and official documents, in line with CRPD Articles 1–4.67 The Committee also underscored the necessity of eliminating discrimination by abolishing the denial of reasonable accommodation under CRPD Article 5 and gender-based violence according to Article 6.68 As in the case of Mexico, the CteRPD envisaged foundational policies as concerns deinstitutionalisation, consistent with CRPD Articles 7 and 19. These include informed consent, the repeal of restrictions on legal capacity under Article 12 and of legislation allowing the sterilisation of persons with disabilities without consent according to Articles 1–4, and the ensuring of access to justice by gender, ethnicity  Ibid., at 1 ff.  Ibid., at 3 and 6. 62  The World Bank Data: Colombia, https://data.worldbank.org/country/Colombia. 63   Rosylane Nascimento das Mercês Rocha, Francisco Cortes Fernandes and Rui Nunes, ‘Assessment of Individuals with Disabilities in Latin America: A Comparative Study of the Legislation’ (2020) 13(14) International Archives of Medicine 1, at 7. 64  Colombia, Second Report under the CIADDIS (Segundo Informe de Cumplimento de los Estados Parte de la Convención) (2016) available only in Spanish athttp://www.oas.org/es/sedi/ ddse/paginas/txt_discapacidad_segundoinforme.html. 65  CteRPD, Concluding Observations on the Initial Report of Colombia, UN Doc. CRPD/C/COL/ CO/1, 30 September 2016, at 1. 66  See below. 67  Ibid., at 2. 68  Ibid., at 3. 60 61

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and type and disability in line with Articles 13–15.69 Within this framework, Colombia was invited to repeal any legislation preventing persons with disabilities from marrying or allowing the placement of children outside their families under CRPD Article 23.70 Similarly, the Committee recommended the prohibition and punishment of discrimination on grounds of disability in the education system according to CRPD Article 2, that free and informed consent in health care decisions be mandated as per Article 25, and that the employment of persons with disabilities through affirmative action be expedited, consistent with Article 27.71 The participation of persons with disabilities in political life and accessibility of voting procedures was also considered a key aspect of inclusive policies aimed at achieving deinstitutionalisation, consistent with CRPD Article 29.72 In light of the concept of ‘inclusive development’, Colombia was further invited to prioritise a disability perspective in poverty reduction and social inclusion strategies, excluding interdiction requirements for persons with disabilities to benefit from social protection measures and strengthening assistance to cover additional costs incurred as a result of disability, in light of CRPD Article 28.73 Procedurally, the Committee recommended that Colombia ratify the CRPD Optional Protocol, allowing individuals and groups to access the CteRPD, designate an independent and properly resourced mechanism for CRPD monitoring, including feedback by representative organisations, under CRPD Article 33, and train judges and prosecutors on disability rights under Article 17.74 Interestingly, the Committee recommended that the State ensure access to justice for victims of armed conflicts, women, children, indigenous people, and Afro-Colombians and Raizal persons with disabilities under CRPD Article 25.75 Notably, it was proposed that Colombia investigate the execution of persons with disabilities in ‘false-positive’ cases during armed conflicts76 and establish criminal responsibility and the payment of reparations to victims in the event of proven mistrial in accordance with CRPD Articles 10 and 16.77

 Ibid., at 2–3 and 6–8.  Ibid., at 9. 71  Ibid., at 9–11. 72  Ibid., at 11–12. 73  Ibid., at 11. 74  Ibid., at 2, 12–13 and 17. 75  Ibid., at 10. 76  ‘False positives’ are civilians, some of whom are persons with disabilities, who were killed by Colombian soldiers and later presented as ‘guerrilleros’ in armed conflicts; they were falsely identified as combatants so that soldiers could gain military decorations, promotions and other benefits. Between 1988 and 2014, the number of civilians assassinated as ‘false positives’ might have reached the number of 10,000 (Mariana Palau, ‘The “False Positive” Scandal That Felled Colombia’s Military Hero’, The Guardian, 19 November 2020 https://pulitzercenter.org/stories/ false-positives-scandal-felled-colombias-military-hero). 77  CteRPD, Concluding Observations on the Initial Report of Colombia (2016) at 5 and 7–8. 69 70

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Based on the Second Report of Colombia under the CIADDIS,78 in 2016 the CEDDIS positively underscored the full inclusivity of the national education system.79 However, the Committee recommended that Colombia improve recreation, transportation, sporting, cultural spaces and justice for persons with disabilities.80 According to the Committee, another area of improvement is participation in the electoral process and employability, and the fostering of affirmative action in the workplace.81 From the standpoint of enforcement, the Committee requested that Colombia improve the collection of detailed and disaggregated statistical data on persons with disabilities, particularly as concerns political participation, and that it train targeted personnel on inclusiveness.82 Moving further south geographically, Brazil is a very prominent political player in Latin America, particularly because of the size of its territory, population and economy. It is not only the largest country in South America, but also the ninth-­ largest economy in the world.83 The country is a party to both the CIADDIS and the CRPD and has adopted comprehensive regulation on disability, starting in 1989 with Federal Law 7853, which established a comprehensive policy for people with disabilities.84 In 2015, the CteRPD commended Brazil, following its Initial Report under the CRPD,85 for recognising the Convention at the constitutional level, establishing a dedicated Commission both in its Congress and at local and regional governmental levels, and for enabling persons with disabilities to access social security cash benefits.86 At the same time, the Committee invited Brazil to address multiple forms of discrimination against people of Indigenous or Afro-Caribbean descent with disabilities, in line with CRPD Article 5, and to address violence against women with goals and indicators measuring progress, according to Article 6.87 As in the case of  Colombia, Second Report under the CIADDIS (Segundo informe de cumplimento de la CIADDIS y del Programa de acción del decenio de las américas por los derechos y la dignidad de las personas con discapacidad) (2020) http://www.oas.org/es/sedi/ddse/paginas/txt_discapacidad_ segundoinforme.html. 79  CEDDIS, Revision of the Second Submission of Colombia under the CIADDIS (Revisión del Informe de Colombia) (2016) at 1 http://www.oas.org/es/sedi/ddse/paginas/txt_discapacidad_ segundoinforme.html. 80  Ibid. at 3–4. 81  Ibid., at 2–4. 82  Ibid., at 3–5. 83  World Bank, Brazil: Data, https://data.worldbank.org/country/BR. 84  Rosylane Nascimento das Mercês Rocha,et al., ‘Assessment of Individuals’ (2020) at 5–6. 85  Brazil, Initial Report of State Parties Due in 2010, UN Doc. CRPD/C/BRA/1, 14 July 2014, available only in Spanish at http://www.oas.org/es/sedi/ddse/paginas/txt_discapacidad_segundoinforme.html. 86  CteRPD, Concluding Observations on the Initial Report of Brazil, UN Doc. CRPD/C/BRA/ CO/1, 29 September 2015, at 1. 87  Ibid., at 2–3. 78

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Mexico, in order to facilitate participation in society, Brazil was required to abolish involuntary hospitalisation, forced medical treatment and the arbitrary detention of people with disabilities, according to CRPD Articles 14 and 15, and along the lines of the principle of deinstitutionalisation under Article 19. The repeal of all legal provisions that perpetuated the system of substituted decision-making was also mandated, prioritising the autonomy of the disabled consistently with Article 12.88 A key critique concerns the right to life, in conjunction with the right to health, whereby Brazil should prohibit the sterilisation of persons with disabilities in the absence of informed consent in line with CRPD Article 17.89 Furthermore, similarly to Colombia, the Committee underscored the need to increase the rate of employment for people with disabilities in light of CRPD Article 27,90 contrasting a negative trend in many Latin American countries where scant progress has been made in improving labour flexibility.91 Institutionally, Brazil was invited to collect relevant disaggregated data and statistics across a spectrum of activities spanning health justice (Articles 16 and 31).92 The country should also put in place independent monitoring and complaint procedures, particularly via a mechanism in line with the Paris Principles,93 including representative organisations, according to CRPD Article 33.94 In 2016, considering the Second Report of Brazil under the CIADDIS,95 the CEDDIS highlighted positive progress in the implementation of relevant policies helping the disabled to access the labour market, targeted support by type of disability, and improved accessibility in educational institutions, cultural projects and public buildings and sites.96 The Revision nonetheless underscored a low level of CIADDIS compliance and the necessity of collecting disaggregated data throughout the different policy areas in order to adequately address future challenges, such as the implementation of anti-discrimination programmes aiming to facilitate employment for people with disabilities.97  Ibid., at 4–5.  Ibid., at 5. 90  Ibid., at 7 91  Mario D.  Velásquez Pinto, ‘Labour Market Regulation and Social Protection: Institutional Challenges’, in Martínez (ed.), Institutional Frameworks (2018) 97, at 100. 92  Ibid., at 5 and 8. 93  Principles Relating to the Status of National Institutions (The Paris Principles), UN GA Res. 48/134 of 20 December 1993. 94  CteRPD, Concluding Observations on the Initial Report of Brazil (2015) at 8. 95  Brazil, Second Report under the CIADDIS (Segundo informe de cumplimento de los estados parte de la CIADDIS) (2016) http://www.oas.org/es/sedi/ddse/paginas/txt_discapacidad_segundoinforme.html. 96  CEDDIS, Revision of the Second Submission of Brazil under the CIADDIS (Revisión del Informe de Brasil) (2016) at 5 ff., http://www.oas.org/es/sedi/ddse/paginas/txt_discapacidad_ segundoinforme.html. 97  Ibid., at 10–15. 88 89

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12.4  E  nforcing Disability Rights via the IAComHR and IACtHR 12.4.1  Sources: Systemic Limits and Methodology The IAComHR is the main adjudicatory body of the OAS: it promotes and monitors human rights in Member States (Article 18 of the Statute of the Commission).98 In accomplishing its tasks, the Commission relies on fundamental rights as outlined in the ADRDM, ACHR and SSP.  Whilst key political players such as the US and Canada are not parties to the ACHR and SSP,99 the ADRDM has a general scope of application. Concerning the promotion of disability rights, along the lines of the OAS 2016–2026 Programme of Action,100 in December 2020, on the International Day of People with Disabilities, the IAComHR called on Member States to implement measures affording people with disabilities full legal capacity.101 The Commission approached the issue by considering that persons with disabilities have rights equal to those of all other people, and should thus have the power to make choices about all aspects of their lives.102 States should therefore abandon the medical paradigm and move to a sustainable and inclusive model of disability, promoting independent living in line with the principles of autonomy and non-discrimination.103 The Commission particularly praised legislation in Argentina, Colombia, Costa Rica and Peru for moving towards the recognition of full legal capacity for persons with disabilities, consistent with the CRPD, and stressed the importance of international regulation for the promotion of the effective participation of people with disabilities in decision-making.104 As regards monitoring, the IAComHR conducts inquiries on human rights based on state reports and available information (Statutory Articles 18(b) and 20(2) and ACHR Article 41). It submits an annual report to the General Assembly of the OAS (Article 59 of the Rules of Procedure of the Commission: ‘RPC’)105 and assesses

 Statute of the Inter-American Commission on Human Rights, Approved by Resolution 447 Taken by the General Assembly of the OAS at Its Ninth Regular Session, October 1979. 99   OAS, American Convention on Human Rights, https://www.cidh.oas.org/basicos/english/ Basic4.Amer.Conv.Ratif.htm. 100  See above s. 2.2. 101  OAS, The IACHR Calls on States to Adopt Measures to Guarantee People with Disabilities Full Legal Capacity from a Human Rights Approach, Press Release, 3 December 2020, http://www.oas. org/en/iachr/media_center/PReleases/2020/289.asp. 102  Ibid. 103  Ibid. 104  Ibid. 105  Rules of Procedure of the Inter-American Commission on Human Rights, approved by the Commission at Its 109th Special Session, 4–8 December 2000 and amended at its 116th Regular Period of Sessions, 7–25 October 2002. 98

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human rights breaches based on individual and State petitions, after exhaustion of domestic remedies (RPC Articles 28 and 31 and ACHR Articles 44–45). If it deems a petition admissible, the Commission determines merits and adopts a preliminary report, including relevant recommendations (RPC Article 31 and ACHR Article 50). Moreover, with respect to a State Party to the ACHR that has accepted the optional jurisdiction of the IACtHR, the Commission or the State involved may further refer a matter to that Court for a new assessment leading to a binding judgment (ACHR Article 51). If, within three months from the notification of a preliminary report to a State, the matter has not been resolved or referred to the IACtHR, the Commission may by an absolute majority of votes deliver final recommendations. As a follow­up, States concerned may submit information on compliance (RPC Article 47 and ACHR Article 51) and the Commission can further adopt measures such as requesting information and holding hearings to verify compliance (RPC Article 48). The IACtHR was established in 1978 upon the entry of the ACHR into force. The Court may adjudicate a dispute if the State involved has ratified the ACHR and accepted the optional jurisdiction of the Court, but only after investigation by the IAComHR and referral by either the Commission or a Member State (ACHR Article 61). If it establishes the violation of a right, the Court can order rectification of the breach, including compensation for damage and litigation costs (ACHR 63). Nonetheless, the Court has no coercive means to enforce its decisions, save taking the initiative of requesting that States report on implementation. The Court also has a consultative function, providing OAS Member States and institutions with an opinion based on the ACHR and other American human rights instruments (ACHR Article 64). Owing to the fact that the CIADDIS and the CRPD are not subject to the jurisdiction of the IAComHR and the IACtHR, the Commission and the Court have had limited opportunities to address the rights of persons with disabilities directly. However, the Commission and the Court have managed to develop meaningful jurisprudence on disability rights by either interpreting the ADRDM and ACHR in light of the CIADDIS and the CRPD or by relying on further international instruments, such as regulation passed by the World Health Organization. Mutatis mutandis, the IAComHR and the IACtHR have adopted with respect to disability rights the same technique that the European Court of Justice and the Court of Justice of the European Union have developed with respect to human rights more generally. Lacking specific human rights provisions in the primary sources of EU law, these courts have developed a significant body of human rights jurisprudence by relying on the European Convention on Human Rights106 and other human rights instruments under general international law.107 A notable case in this respect is Luis Fernando Guevara Díaz v. Ecuador,108 where the IAComHR assessed the situation  Convention for the Protection of Human Rights and Fundamental Freedoms, opened for signature 4 November 1950, 213 UNTS 221, entered into force 3 September 1953. 107  See, for instance, Internationale Handelsgesellschaft mbH v. Einfuhr- und Vorratsstelle für Getreide und Futtermittel, Case 11–70 (1970) ECR 1125. 108  Luis Fernando Guevara Díaz v Ecuador, Petition 1064–05, 12 July 2005. 106

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of a person with mental disability who was not selected for a public post after achieving the best score in a competitive hiring process.109 The Commission upheld a violation of the rights to equal protection before the law, fair trial and judicial protection, based on the SSP interpreted in light of the CIADDIS.110

12.4.2  Jurisprudence Because of the impossibility of direct reliance on disability rights instruments, the disability jurisprudence of the IAComHR and IACtHR is limited not only quantitatively, but also in its scope. In fact, the Commission and the Court have developed case law on specific aspects of first- and second-generation disability rights, but have not contributed to the advancement of third-generation rights embedded in recent UN and OAS instruments, particularly the OAS 2016–2026 Program of Action. There is therefore a need for contributions to the development of critical issues, such as accessibility and the full integration of people with disabilities in economic activities. Scholars have nonetheless noted an improvement in the attention paid by the Commission and the Court to the development of disability rights, particularly since 2009.111 The IAComHR has dealt with first-generation rights and disability in cases where persons with disabilities have suffered from ill-treatment and medical negligence. In Patients of the Psychiatric Service of Santo Tomas Hospital v. Panama,112 considering medical negligence, malpractice and manslaughter by hospital personnel, as well as a miscarriage of justice, the Commission held Panama to have breached the rights of a mentally disabled person to humane treatment, fair trial and judicial protection under Articles 5, 8 and 25 of the ACHR.113 In Ronal Jared Martínez and Family & Marlon Fabricio Hernandez Fúnez v. Honduras,114 the IAComHR upheld the excessive use of force by police agents and members of the National Army causing paraplegia, in breach, inter alia, of the right to access judicial remedies for a mentally disabled person.115 Similarly, in Sebastián Furlán and Family v. Argentina,116 the IACtHR assessed the situation of a child suffering from difficulties in speaking and using his upper and lower limbs because of an accident occasioned at a military installation. Based on the need for social inclusion established under  Id., Report No. 13/12 of 20 March 2012, 2, at para. 9.  Id., at para. 42. 111  Peralta, ‘Disability Rights’ (2018) at 49 ff. 112  Patients of the Psychiatric Service of Santo Tomas Hospital v. Panama, IAComHR, Petition 790-05, 18 July 2005. 113  Id., Report 94/13, 4 November 2013, at 11. 114  Ronal Jared Martínez and Family & Marlon Fabricio Hernandez Fúnez v. Honduras, IAComHR, Petition 886/04, 15 September 2004. 115  Id., Report no. 56/14, 21 July 2014, at 5–6, paras 29–30. 116  Sebastián Furlán and Family v. Argentina, IACtHR, Petition of 18 July 2001. 109 110

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the CRPD and the CIADDIS,117 the Court considered that a delay of 12 years in proceedings following a request for compensation constituted a breach of both the right to a fair trial and the rights of the child under ACHR Articles 8 and 19.118 The IAComHR has also developed relevant jurisprudence on the prohibition of capital punishment with respect to people with disabilities. Particularly, in Clarence Allen Lackey and Others v. US,119 the IAComHR considered the execution of 16 victims, including seven people with mental disabilities, pending proceedings before the Commission. In light of ADRDM Articles I and XXVI, governing the rights to life and fair trial, the Commission considered that people with a mental disability have a right not to be subject to capital punishment,120 interpreted as a ‘principle of international law’.121 According to the Commission, the prohibition is justified by the fact that people with disabilities are unable to comprehend the reasons for an execution and its consequences.122 This interpretation is in line with the stance adopted by the UN Human Rights Council in similar cases.123 Concerning second-generation rights, in Irene v. Argentina the IAComHR considered the situation of a girl of 12 years with cerebral palsy and visual-auditory disorder, necessitating the support of a school therapeutic companion.124 The State afforded assistance for some years, but suddenly withdrew it without notice. Applying the social model of disability, equality and full integration into society, the Commission held Argentina in breach of not only the right to personal integrity and life, but also to health and inclusive education in light of the UNESCO guidelines on such matters.125 Along these lines, and upon a referral by the IAComHR, in Ximenes Lopes v. Brazil the IACtHR considered the case of a mentally disabled person who suffered injuries and died at Casa de Reposo Guararapes, a private health institution acting under State delegation.126 The Court considered that the right to life entails for the State positive obligations, including a duty to provide essential adequate health services for everyone.127 Because of the insufficiency of its operating conditions, the Court held Casa de Reposo Guarapes in breach of the rights to life and personal integrity of people with disabilities under ACHR Articles

 Id., Judgment of 31 August 2012, at 87, para. 278.  Ibid., at 103, para. 335. 119  Clarence Allen Lackey et al. v. US, IAComHR, Petitions 11.575, 12.333 and 12.341 of 23 May 2011, 2 June 2011 and 11 October 2011. 120  Id., Report 52/2013, 15 July 2013, at 39, para. 206. 121  Ibid., at 39–40, para. 213. 122  Ibid., at 41, para. 218. 123  See RS v. Trinidad & Tobago, HR Comm. 684/1996, UN Doc. 684/1996 (2002) at paras 2.6 and 7.2. 124  Irene v. Argentina, IAComHR, Petition 7 August 2015. 125  Id., Resolution 38 of 7 July 2016, at 10–11, paras 25 and 31. 126  Ximenes-Lopes v. Brazil, IACtHR, Petition of 1 October 2004. 127  Id., Judgment of July 4 2006, at 57–59, paras 125 and 128. 117 118

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4 and 5.128 In González Lluy v. Ecuador,129 the IACtHR further elaborated on the right to inclusive education. The Court considered the case of a girl who was infected with HIV following a blood transfusion carried out by a private institution operating under State authorisation which led to her exclusion from several schools throughout the country. The Court determined that HIV should not be a reason for discrimination and held the State in breach of the right to education under Article 19(6) of the SSP,130 interpreted in light of the General Comment of the Committee on the Rights of the Child (CteRC) on ‘The Aims of Education’.131 The IACtHR considered that a decision of the Court of Cuenca in favour of exclusion prima facie aiming to protect the right to life of classmates was ultimately based on stereotypes and not supported by adequate evidence.132 At the crossroads between first- and second-generation human rights, the IACtHR has also contributed to advancing the controversial debate on the conflict between the rights to life and health. Notably, in Artavia Murillo v. Costa Rica,133 upon a referral by the IAComHR, the IACtHR dealt with a decision of the Constitutional Section of the Supreme Court of Costa Rica to establish an absolute prohibition of in vitro fertilisation (IVF).134 In line with its previous jurisprudence in Ximenes Lopes v. Brazil, the Court acknowledged the right of anyone, including people with disabilities, to access health care, particularly, sexual and reproductive healthcare, based on the CRPD.135 Building on the definition of disability established under the WHO International Classification of Functioning, Disability and Health, the CIADDIS and the CRPD, the Court considered that involuntary infertility is a form of disability consistent with the social paradigm.136 The Court thus held that a total prohibition on IVF has a disproportionate impact on the rights to personal integrity, liberty, private and family life and the right to have a family under the ACHR.137

 Ibid., at 60, para. 132.  González Lluy v. Ecuador, IACtHR, Petition of 18 March 2012. 130  Id., Judgment of 1 September 2015, at 70, para. 255, and 113. 131  CtRC, The Aims of Education (Article 29 of the Convention on the Rights of the Child), General Comment No. 1, UN Doc. CRC/GC/2001/1, 17 April 2001. See González Lluy (2015) at 73–74, para. 262. 132  González Lluy (2015) at 76, para. 266. 133  Artavia Murillo et al. (‘In Vitro Fertilisation’) v. Costa Rica, Petition of 29 July 2011. 134  Decision of 11 October 2000. 135  Artavia Murillo, IACtHR, Judgment of 28 November 2012, at 101, para. 355. 136  Id., at 85–86, para. 289. 137  Id., at 93, paras 314–316. This decision remains controversial on several counts. See, for instance, Juan Cianciardo, ‘La especificación del derecho a la vida del no nacido en el sistema interamericano de derechos humanos: Una aproximación desde el caso “Artavia Murillo”’ (2016) 25(2) Díkaion 160. 128 129

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12.5  Conclusion Inter-American States were the first to adopt a specific and comprehensive convention in the area of disability, the CIADDIS. That convention aims to eliminate discrimination and facilitate full integration for the disabled in society. Whilst the CIADDIS is a short text outlining basic directives for state disability policies, it marks a significant step in the development of disability law and one on which the CRPD has built to develop further protection for persons with disabilities. Most States in the Americas are currently parties to both the CIADDIS and the CRPD. The purpose of adhering to these treaties is allowing countries in America to develop targeted policies for people with disabilities, whereby the concept of ‘inclusive sustainability’ emerges as central in the move from the first OAS Program of Action on the Rights and Dignity of Persons with Disabilities to the second one. Within such an inter-State regulatory system, two issues emerge where States could do more for respecting, protecting and fulfilling the rights of persons with disabilities, moving to a full implementation of the concept of ‘different ability’. A first issue is socio-­ economic and a second one is institutional. From a socio-economic viewpoint, there is a gap between the US and Latin American countries, which hampers the implementation of disability rights. Whilst the CEDDIS and CteRPD underscore the adoption of relevant State policies in the area of disability, not enough progress has been made with particular regard to the foundational issues of independent living and participation in society. In this context, differences in disability policies between Brazil, Mexico and Colombia are less a matter of kind than of degree: they are likely to be representative of the wider situation in Latin America. Shortcomings betray common problems which many of these countries face today at the societal level. Notably, integration of marginalised groups requires a significant reduction in economic inequality. Monitoring institutional independence and accountability depends on a strong culture of transparency. Preventing and punishing abuse and violence presupposes a solid rule of law, whilst the implementation of a human rights approach to disability rests on a healthy democratic atmosphere.138 In this context, in light of its political prominence, the fact that the US has not yet ratified the ACHR, CIADDIS and CRPD constitutes a significant barrier to the implementation of disability rights at the regional level, with important international ramifications. Institutionally, the Inter-American system is asymmetrical with respect to disability rights as the IAComHR and the IACtHR have no jurisdiction over the CIADDIS and CRPD. Thus, the Commission and the Court have developed a limited jurisprudence that does not address comprehensively the loopholes highlighted by the observations of the CEDDIS and CteRPD. However, both the Commission and the Court have relied on the CIADDIS and the CRPD as interpretive instruments with respect to the ACHR and SSP to develop meaningful jurisprudence on 138  As shown in Fig. 12.1, the region still has a long way to go in terms of democracy, transparency, economic equality and, crucially, the rule of law.

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specific aspects of disability rights. This allows for the extension of the disability jurisprudence of each body to States – particularly the US via the ADRMD – which are not parties to the CIADDIS and the CRPD. Notably, in the context of civil and political rights, the IAComHR and IACtHR have contributed to advancing the rights to personal integrity, life and freedom from capital punishment. As concerns economic, social and cultural rights, the Commission and the Court have significantly advanced the rights to education, health and reproductive rights, and access to justice. They have acted based on individual complaints and have not yet elaborated comprehensively on the third-generation concept of inclusive sustainability, inter alia because of the perimeter of their respective jurisdictions. These are important limits: they should be remedied to improve the efficacy and full development of disability rights throughout the Americas.

References139 Documents Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights, adopted 17 November 1988, entered into force 16 November 1999. American Convention on Human Rights, opened for signature 22 November 1969, 1144 UNTS 123, entered into force 18 July 1978. Brazil. 2014. Initial Report of State Parties Due in 2010, UN Doc. CRPD/C/BRA/1. Brazil. 2016. Second Report under the CIADDIS (Segundo Informe de Cumplimento de los Estados Parte de la CIADDIS). CEDDIS. 2016. Revision of the Second Report of Mexico (Revisión del Informe de México). CEDDIS. 2016. Revision of the Second Submission of Brazil under the CIADDIS (Revisión del Informe de Brasil). CEDDIS. 2016. Revision of the Second Submission of Colombia under the CIADDIS (Revisión del Informe de Colombia). Charter of the Organization of American States, opened for signature 30 April 1948, 119 UNTS 1609, entered into force 13 December 1951. Colombia. 2016. Second Report under CIADDIS (Segundo Informe de Cumplimento de la CIADDIS y del Programa De Acción del Decenio de las Américas por los Derechos y la Dignidad de las Personas con Discapacidad). Colombia. 2016. Second Report under the CIADDIS (Segundo Informe de Cumplimento de los Estados Parte de la Convención). Congressional Research Services. 2021. US Role in the World: Background and Issues for Congress. Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3, entered into force 2 May 2008. CteRPD. 2014. Concluding Observations on the Initial Report of Mexico, UN Doc. CRPD/C/ MEX/CO/1. CteRPD. 2015. Concluding Observations on the Initial Report of Brazil, UN Doc. CRPD/C/ BRA/CO/1.

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CteRPD. 2016. Concluding Observations on the Initial Report of Colombia, CRPD/C/COL/CO/1. European Convention for the Protection of Human Rights and Fundamental Freedoms, opened for signature 4 November 1950, 213 UNTS 221, entered into force 3 September 1953. Inter-American Convention on the Elimination of all Forms of Discrimination against Persons with Disabilities, opened for signature June 1999, entered into force 14 September 2001. International Covenant on Civil and political Rights, opened for signature 16 December 1966, 999 UNTS 171, entered into force 23 March 1976. International Covenant on Economic, Social and Cultural Rights, opened for signature 16 December 1966, 993 UNTS 3, entered into force 3 January 1976. Mexico. 2013. Implementation of the Convention on the Rights of Persons with Disabilities, Initial Report of Mexico, UN Doc. CRPD/C/MEX/17. Mexico. 2016. Second Report under the CIADDIS (Segundo Informe de Cumplimento de los Estados Parte de la Convención). OAS. 1999. Inter-American Convention on the Elimination of all Forms of Discrimination against Persons with Disabilities, AG/RES. 1608, XXIX-O/99. OAS. 2006. Declaration on the Decade of the Americas for the Rights and Dignity of Persons with Disabilities, AG/DEC. 50 (XXXVI-O/06). OAS. 2006. Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities, AG/RES. 2230 (XXXVI-O/06). OAS. 2016. Declaration on Extension of the Decade of the Americas for the Rights and Dignity of Persons with Disabilities and Consolidation of the Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2016–2026), AG/DEC. 89 (XLVI-O/16). OAS. 2020. The IACHR Calls on States to Adopt Measures to Guarantee People with Disabilities Full Legal Capacity from a Human Rights Approach, Press Release, http://www.oas.org/en/ iachr/media_center/PReleases/2020/289.asp. OHCHR. 2020. Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc. A/HRC/44/30. Optional Protocol to the Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 999 UNTS 3, entered into force 3 May 2008. Permanent Council of the OAS, Committee on Juridical and Political Affairs, Working Group to Prepare a Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2006-2016), http://www.oas.org/consejo/CAJP/disabilities.asp. Rules of Procedure of the Inter-American Commission on Human Rights, Approved by the Commission at Its 109th Special Session, 4-8 December 2000 and Amended at its 116th Regular Period of Sessions, 7-25 October 2002. Directors and Public Policy Leaders for People with Disabilities. Second Meeting (Segunda reunión de directores y formuladores de políticas públicas para personas con discapacidad). 2010. https://www.oas.org/es/sedi/ddse/paginas/index-­4_pda_reunion_II.asp. Statute of the Inter-American Commission on Human Rights, Approved by Resolution 447 taken by the General Assembly of the OAS at Its Ninth Regular Session, October 1979. UN. 1993. Principles relating to the Status of National Institutions (The Paris Principles), GA Res. 48/134, 20 December. UN, Sustainable Development Goals, https://sdgs.un.org/goals. US. 2009. Progress Report on the Implementation of the Program of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities 2006-2016, https://www. oas.org/es/sedi/ddse/paginas/documentos/discapacidad/PAD/1er_InformePAD/Estados%20 Unidos.pdf. White House, Office of the Press Secretary. 2009. Remarks by the he President on Signing of UN Convention on the Rights of Persons with Disabilities Proclamation, https://obamawhitehouse.archives.gov/realitycheck/the-­press-­office/remarks-­president-­rights-­persons-­with-­ disabilities-­proclamation-­signing. World Bank Data: Colombia, https://data.worldbank.org/country/Colombia.

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World Bank. 2019. Eighty-five Million Reasons to Prioritize Persons with Disabilities during Disasters in Latin America and the Caribbean, https://www.worldbank.org/en/news/ feature/2019/12/03/85-­m illion-­r easons-­t o-­p rioritize-­p ersons-­w ith-­d isabilities-­d uring-­ disasters-­in-­latin-­america-­and-­the-­caribbean. World Bank, Brazil: Data, https://data.worldbank.org/country/BR. World Bank, GDP  – Mexico, https://data.worldbank.org/indicator/NY.GDP.MKTP. CD?locations=MX. World Commission on Environment and Development. 1987. Our Common Future, Report.

Cases Artavia Murillo et al. (‘In Vitro Fertilisation’) v. Costa Rica, Petition of 29 July 2011. Artavia Murillo et  al. (‘In Vitro Fertilisation’) v. Costa Rica, IACtHR, Judgment of 28 November 2012. Constitutional Section of the Supreme Court of Costa Rica, Decision of 11 October 2000. Clarence Allen Lackey et al. v. US, IAComHR, Petitions 11.575, 12.333 and 12.341 of 23 May 2011, 2 June 2011 and 11 October 2011. Clarence Allen Lackey et al. v. US, Report 52/2013, 15 July 2013. CtRC, The Aims of Education (Article 29 of the Convention on the Rights of the Child), General Comment No. 1, UN Doc. CRC/GC/2001/1, 17 April 2001. Internationale Handelsgesellschaft mbH v. Einfuhr- und Vorratsstelle für Getreide und Futtermittel, Case 11-70 (1970) ECR 1125. Irene v. Argentina, IAComHR, Petition 7 August 2015. Irene v. Argentina, Resolution 38 of 7 July 2016. González Lluy v. Ecuador, IACtHR, Petition of 18 March 2012. González Lluy v. Ecuador, Judgment of 1 September 2015. Luis Fernando Guevara Díaz v. Ecuador, Petition 1064-05, 12 July 2005. Patients of the Psychiatric Service of Santo Tomas Hospital v. Panama, IAComHR, Petition 790-05, 18 July 2005. Patients of the Psychiatric Service of Santo Tomas Hospital v. Panama, Report 94/13, 4 November 2013. Ronal Jared Martínez and Family & Marlon Fabricio Hernandez Fúnez v. Honduras, IAComHR, Petition 886/04, 15 September 2004. RS v. Trinidad & Tobago, HR Comm. 684/1996, UN Doc. 684/1996 (2002). RS v. Trinidad & Tobago, Report no 56/14, 21 July 2014. Sebastián Furlán and Family v. Argentina, Judgment of 31 August 2012. Ximenes-Lopes v. Brazil, IACtHR, Petition of 1 October 2004. Ximenes-Lopes v. Brazil, Judgment of July 4 2006.

Bibliography Cianciardo, J. (2016). La especificación Del Derecho a la Vida Del No Nacido En El Sistema Interamericano De Derechos Humanos. Una aproximación Desde El Caso ‘Artavia Murillo’ Díkaion, 25(2), 160–189. Das Mercês Rocha, R. N., Cortes, F., & Nunes, R. (2020). Assessment of individuals with disabilities in Latin America: A comparative study of the legislation. International Archives of Medicine, 13(14), 1.

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Conclusion

Nothing beautiful without struggle (χαλεπὰ τὰ καλά) Plato, The Republic

A ‘mapping’ of disability (rectius, different ability) rights and duties via an international and comparative analysis, with a focus on the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD)’ as an essential codification instrument,1 reveals some critical insights. Fundamentally, the research shows that the architecture of disability rights is structured around the classical typology of first-, second- and third-generation human rights. However, the fact that people with a disability are differently able with respect to other people triggers a shift in focus from the obligation to respect human rights to the duty to fulfil disability rights. The State, first and foremost, has an obligation to take a proactive approach and, for instance, adopt adequate policies to facilitate the participation of persons with disability in society. This duty also applies to a different extent to other societal actors. Indeed, participation depends quintessentially on employment and people with disabilities would not be able to adequately access the open labour market without the positive action of corporations, for instance, via the concrete implementation of quota schemes. Non-­ governmental organisations also play a crucial role in filling gaps that States are often not able to address and in advocating disability rights as a concrete reality via decentralised action on the ground. Basic divides underpin disability regulation. A first critical divide is established between developed and developing countries. In developing countries, people with disabilities are still the addressees of a profound stigma; furthermore, a lack of financial resources and technology often makes it difficult to achieve objectives such as work accessibility and accommodation. Moreover, developed countries reveal loopholes as concerns critical issues such as disparity in education and underemployment with respect to women with disabilities. A second critical divide  Opened for signature 13 December 2006, 2515 UNTS 3, entered into force 3 May 2008.

1

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emerges along the lines of the degree of secularity of the State. Notably, proceeding with abortion in the case of an impaired foetus is particularly difficult in those States where religious leaders have prominent political influence. The Holy See is a clear example of a government resisting the idea of allowing abortive practices, despite the fact that most women are favourable to abortion when they know they have an impaired foetus, so much so that they are ready to expatriate when abortion is prohibited in their own country. A third divide is based on the different types of disabilities, particularly intellectual disability, as compared to other forms of disability. In fact, it is clear that intellectual disability requires differential treatment as compared to blindness with regard to education and labour rights. A comprehensive analysis of regulatory instruments shows that disability is mostly addressed as a uniform issue, without sufficient distinction between these different forms of disability. A fourth divide emerges in the distinction between different vulnerable groups, as people with disabilities constitute a cross-sectoral group that intersects with other vulnerable people such as children, women and older persons. These cross-sectional groups are often overlooked in their own rights, as, for example, labour policies are established to address the underemployment of disabled persons without being adequately shaped based on gender. Fundamental divides result in fragmented regulation: in some regulatory areas, harmonisation is more advanced, whilst in others it is less progressive. For instance, a certain degree of harmonisation emerges in the field of education, despite the fact that factors such as the federal or centralised nature of the State have a profound impact on the level of harmonisation. By contrast, the right to life is more problematic; in particular, with regard to the essential question of the possibility of aborting when a foetus is malformed, different States within the same or different legal families, for example, common law or Islamic law systems, take different approaches. Where some States are absolutely restrictive, others are more permissive. On a final note, this framework is subject to fast evolution. Whereas third-­ generation human rights, notably the right to sustainable development, were not initially prominent within the context of the disability agenda, they have now moved to centre stage. Disability has an important role to play in the evolution of this as yet undefined legal categorisation. The UN Sustainable Development Goals clearly affirm their inclusive nature with respect to vulnerable groups, whereby people with disabilities play a key role: greening the economy cannot be adequately achieved without including persons with disabilities.2 This entails a shift in perspective from disability rights as individual rights to a conception whereby disability rights become group rights and the individual fully merges into the community, according to the egalitarian idea of ‘different ability’. 

Ottavio Quirico

2  UN GA, Transforming Our Goals: The 2030 Agenda for Sustainable Development, A/RES/70/01, 25 September 2015; OHCHR, Analytical Study on the Promotion and Protection of the Rights of Persons with Disabilities in the Context of Climate Change, UN Doc A/HRC/44/30 (2020).

Index

A Abortion beginning of life, 56, 60 criminal law, 54, 60, 62 foetal anomalies, 60, 66, 67 personhood, 55 Access to work, 35, 135, 140–142, 242, 251, 268 African Union (AU), xvii, 8, 19, 224–242 Asia-Pacific, xii, xvii, 188, 247–269 Assistive technology, xviii, 112, 120–121, 126, 217 Association of Southeast Asian Nations (ASEAN), xvii, 19, 33, 250, 251, 256 B Business inclusive, 39, 112, 117, 141, 147 C Convention on the Elimination of all Forms of Discrimination against Persons with Disabilities (CIADDIS), xii, xvii, 8, 19, 272–282, 284, 285, 287–292 Convention on the Rights of Persons with Disabilities (CRPD) coordination mechanism focal point, 20, 114, 180 implementation mechanism, 31, 176, 195, 206 Optional Protocol, x, 17, 18, 156, 176, 181, 275, 283

© Springer Nature Singapore Pte Ltd. 2022 O. Quirico (ed.), Inclusive Sustainability, https://doi.org/10.1007/978-981-19-0782-1

Copyright, 108, 109, 121–123, 126 Council of Europe equivalent protection, 201 European Convention on Human Rights (ECHR), 217, 218 D Developing countries, ix, xi, 15, 32, 43, 46, 54, 109, 110, 115, 117, 119, 121, 122, 126, 148, 178, 255, 268, 298 Different ability, ix, 28, 46, 52, 75, 108, 126, 132, 148, 155, 169, 176, 194, 224, 241, 248, 269, 272, 291, 297, 299 Disability intellectual, xi, 19, 33, 65, 74, 101, 124, 140–142, 144, 156, 195, 264, 298 legal capacity, 10, 23, 184, 282, 286 services, 8, 15, 16, 70, 108, 110, 112, 120, 126, 137, 139, 142, 144, 167, 178, 224, 253, 255, 258–260, 263–265, 279, 281, 288 stigma, 74, 266, 298 Disability rights duties (and), xi, 6–11, 28–46, 177, 182, 297 education (right to), ix, 82–101, 118 fifth-generation, 22, 39 first-generation (civil and political rights), 4, 41, 46, 275 fourth-generation, 39 fulfil, xii, 10, 12, 18–20, 22, 38, 46, 176, 180, 191, 297 health (right to), 9, 42, 52–76, 233, 285 life (right to), 41, 52–76, 285

299

Index

300 Disability rights (cont.) participation (right to), 32, 114, 154–170 protect, 10, 11, 18, 20, 22, 29, 176, 180, 186, 191, 208 respect, xi, xii, 5, 12, 15, 22, 28, 39, 74, 182, 191, 218, 275, 287, 291, 297 second-generation (economic, social and cultural rights), 4, 10, 22, 42, 46, 180, 275 third-generation, 10, 22, 46, 180, 275, 288, 292, 297, 298 tripartite, xi, 5, 22, 45, 46, 275 work (right to), 9, 39, 116, 132–149, 275 E Economics macroeconomics, 108–114, 126 microeconomics, 108, 109, 123–126 poverty, 39 Equality non-discrimination, ix, 5, 10, 217, 252 European Union (EU) shared competence, 200–202 H Holy See, 20–22, 68–70, 72, 298 Human rights city, xii, 153–170 I Inclusive sustainability climate finance, 114 sustainable development, 34 Sustainable Development Goals (SDGs), 33 Independent living, 118, 126, 133, 142, 195, 213, 277, 286, 291 International Disability Alliance (IDA), xix, 31, 33, 45, 157, 184, 195 Investment project financing, 115 M Middle-East, 266–268 N National Development Plan implementation plan, 239 National disability insurance scheme (NDIS), xix, 137, 258–260, 263–266, 268

O Organisation of American States (OAS), xix, 8, 19, 272–274, 276–280, 286–288, 291 R Reasonable accommodation, 9, 14, 39, 43, 88, 96, 115, 133, 142–144, 148, 184, 186, 240, 267, 282 Representative organisation, 16, 18, 29, 32, 43, 70–76, 134, 158, 209, 210, 251, 257, 265, 274, 283, 285 Responsibility corporation, 17, 43 individual, 42, 43, 97 international organisation, 17–20, 44 NGO, 44 State, 11, 17, 20, 43, 210, 213, 218, 219 S Sector private, 39, 133, 146, 281 public, 133, 144, 146, 281 Secularism laicism, xi Sovereign Order of Malta, 21 T Trade, xix, 14, 30, 38, 108–113, 127, 132, 133, 146, 148, 194, 210, 251 U United Nations Charter, xii, 176, 182, 227 Committee on Economic, Social and Cultural Rights (CteSCR), 13 Commission on Trade and Development (UNCTAD), 194, 195 Committee on the Rights of Persons with Disabilities (CteRPD), 195 Committee on the Rights of the Child, 88, 178, 290 Department of Economic and Social Affairs (DESA), 7, 8, 19, 33, 111, 115, 184, 190–192, 194, 195, 210, 256 Development Program, 108 Economic and Social Council (ECOSOC) ECOSOC Commissions for Africa (ECA), 188

Index ECOSOC Commissions for Europe (ECE), 188 ECOSOC Commissions for Latin-­America and the Caribbean (ECLAC), 188 ECOSOC Commissions for the Asia-Pacific (ESCAP), 8, 94, 188, 194, 248–252, 254–256, 259, 268 ECOSOC Commissions for Western Asia (ESCWA), 188, 250, 266 General Assembly, 227, 272 Human Rights Commission (HRCom), 44, 65, 184, 185, 189 Human Rights Committee (HRCte), 13, 38, 43, 45 Human Rights Council (HRC), xi International Labour Organisation (ILO), 6, 108 Office of the High Commissioner for Human Rights (OHCHR), x, 11, 12, 18, 82, 83, 95, 113, 114, 126, 146, 176, 180, 186, 190–192, 194, 277, 299

301 Partnership on the Rights of Persons with Disabilities (UNPRPD), 194 Secretary-General, 195 Special Rapporteur on the Rights of Persons with Disabilities (SRRPD), xi, 185 UNICEF, 89 V Vatican City State, 20–22 Vocational rehabilitation, xx, 6, 15, 119, 133–136, 139, 179, 193, 204 Vulnerable group children, 155, 179, 230, 298 indigenous people Australian First Nations People, 261–266 women, 139 W World Bank Group World Bank, 112, 115, 117