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Human Rights and Disability
The current use and future potential of
United Nations human rights instruments
in the context of disability
Gerard Quinn and Theresia Degener
with
Anna Bruce, Christine Burke, Dr. Joshua Castellino, Padraic Kenna, Dr.Ursula Kilkelly, Shivaun Quinlivan
United Nations
New York and Geneva, 2002
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NOTE
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The views expressed in this publication are those of the authors and do not necessarily reflect the views of the Office of the United Nations High Commissioner on Human Rights.
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Contents
Page
Note on contributors vii
Forewordix
Acknowledgements x
Executive summary 1
Part 1
Background: The shift to a human rights framework of reference
Chapter 1The moral authority for change: human rights values and the worldwide process
of disability reform13
1.1Human values – the human being as subject and not object14
1.2From values to rights: a system of freedom built on human values19
1.3The core problem: the "invisibility" of people with disabilities in the system of
freedom19
1.4Human rights as a “visibility” project in the context of disability26
Chapter 2 The application of moral authority: the shift to the human rights perspective on
disability through United Nations “soft” law29
2.1Early United Nations General Assembly resolutions on disability29
2.2The emergence of the rights model in the 1980s: the World Programme of Action
(1982)30
2.3Influential United Nations studies and guidelines33
2.4The United Nations Standard Rules on the Equalization of Opportunities for
Persons with Disabilities (1993)34
2.5.World conferences and disability38
2.6United Nations Commission on Human Rights resolutions and disability40
2.7 United Nations expert seminars on disability42
2.8General Assembly resolution on a convention to promote and protect the rights
and dignity of persons with disabilities45
2.9Conclusions46
Chapter 3Building bridges from “soft law” to “hard law”: the relevance of the United
Nations human rights instruments to disability47
3.1The United Nations human rights treaty system47
3.2Navigating the United Nations human rights treaty system49
Part 2
Evaluation of the current use of the United Nations human rights instruments
in the context of disability
Chapter 4Disability and freedom: the International Covenant on Civil and Political Rights
(ICCPR)53
4.1The relevance of civil and political rights to disability53
4.2Enforcement and interpretation of the ICCPR in the context of disability59
4.4Disability as a human rights issue in the complaints procedures under the first
Optional Protocol to the ICCPR72
4.5Conclusions on the ICCPR and disability75
Chapter 5 Disability and social justice: the International Covenant on Economic, Social
and Cultural Rights79
5.1An overview of the International Covenant on Economic, Social and Cultural
Rights80
5.2The general application of the ICESCR in the context of persons with a disability82
5.3The relevance of specific ICESCR rights in the context of disability88
5.4Case studies on the current use of the ICESCR in the context of disability110
5.5Conclusions on the ICESCR and disability130
Chapter 6 The integrity of the person: the Convention against Torture and Other Cruel,
Inhuman or Degrading Treatment or Punishment and disability133
6.1An overview of the Convention against Torture and Other Cruel, Inhuman or
Degrading Treatment or Punishment133
6.2The general relevance of Convention norms in the context of disability148
6.3Case studies on the operation of the Convention in the context of disability151
6.4Conclusions on CAT and disability163
Chapter 7Gender and disability: the Convention on the Elimination of all Forms of
Discrimination against Women165
7.1Introduction to CEDAW165
7.2The general application of CEDAW norms in the context of disability172
7.3Case studies on the current use of CEDAW in the context of disability178
7.4Conclusions and future perspectives on CEDAW188
Chapter 8 Disability and children: the Convention on the Rights of the Child (CRC)191
8.1.Background to the Convention191
8.2The relevance of the CRC norms in the context of disability192
8.3Implementation of the Convention200
8.4Case studies on the current operation of the CRC in the context of children with
disabilities208
8.5The increasing prominence of the disability perspective in the CRC Committee216
8.6Conclusions on the CRC and disability226
Chapter 9 Disability and racial discrimination: the International Convention on the
Elimination of All Forms of Racial Discrimination (CERD)229
9.1Background to the Convention229
9.2The Convention enforcement machinery231
9.3Relevance of ICERD norms in the context of disability233
9.4Case studies on State party reports with a disability dimension239
9.5Conclusions on CERD and disability240
Part 3
Options for the future: towards maximizing the potential of
the United Nations human rights instruments in the context of disability
Chapter 10 Civil society: current use of the United Nations human rights system and future
choices243
10.1Part I: Organizational details245
10.2Part II: Self-understanding of disability NGOs as human rights defenders
(questions 1-6)246
10.3Part III: Self-evaluation of human rights capacities (questions 7-18)249
10.4Part IV: Current levels of DPO/INGO engagement with the United Nations
human rights machinery256
10.5 Part IV: Outcome of engagement with the human rights treaty monitoring bodies263
10.6. Part VI: The future268
10.7 Conclusions on the NGO questionnaire270
Chapter 11National human rights institutions – catalysts for change273
11.1Level of disability awareness (questions 1-3)274
11.2The status of disability rights on the agenda of national institutions (questions 4-7)275
11.3The disability rights record of national institutions (questions 8-11)277
11.4Litigation on disability rights279
11.5Education and capacity-building (questions 15 and 16)280
11.6Disability and the law reform process (questions 17 and 18)282
11.7Conclusions284
Chapter 12Recommendations: Making the United Nations human rights machinery work
better in the context of disabiity287
12.1States parties – towards a more sustained focus on persons with disabilities as
the beneficiaries of the human rights treaties287
12.2Treaty monitoring bodies – towards the mainstreaming of disability288
12.3The Office of the High Commissioner for Human Rights – advancing disability
as a human rights issue288
12.4United Nations Commission for Human Rights – bringing disability onto the
agenda290
12.5National human rights institutions – enabling reform to come about290
12.6Civil society – disability NGOs as human rights NGOs290
Chapter 13Expanding the system: the debate about a disability-specific convention293
13.1Growing support for a thematic convention293
13.2A thematic convention as a way of enhancing the “visibility” of people with
disabilities in the human rights system294
13.3The practical benefits of a thematic convention295
13.4Dignity and equality as the key to the content of a thematic convention296
13.5The new freedom agenda and disability: the interdependence of all human rights296
13.6A thematic convention as an aid to the mainstreaming of disability in United
Nations human rights instruments297
13.7The mutually reinforcing roles of a thematic convention and the United Nations
Standard Rules 297
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Contributors
Theresia Degener is a German lawyer and Law Professor specializing in disability law. She holds an LL.M. from the University of California (Berkeley) and has published extensively on disability law. She is a Professor of Law at the University of Applied Sciences, Rheinland-Westfalen-Lippe, Bochum, Germany. She has taught disability law at the University of California (Berkeley). She has a disability.
Gerard Quinn is an Irish barrister and Law Professor specializing in disability law. He holds an LL.M. and S.J.D. from Harvard Law School. He is the academic coordinator of a European Commission network of disability lawyers. He is also a member of the Human Rights Commission of Ireland and of the European Committee on Social Rights (Council of Europe). He is a Professor of Law at the National University of Ireland (NUI), Galway. He is convenor of a Disability Law and Policy Research Unit at the NUI, Galway School of Law. He has a daughter with a disability.
Anna Bruce holds an LL.M. from the University of Lund (Sweden) as well as a Master’s Degree in International Human Rights Law (LL.M) from the University of Lund Raoul Wallenberg Institute. Her area of expertise within human rights is equality and non-discrimination. She worked on the project while engaged as a researcher at the Disability Law and Policy Research Unit, NUI, Galway.
Padraic Kenna is a graduate of the University of Warwick (UK) and is a specialist in economic, social and cultural rights. He was engaged on the project as a researcher at the Disability Law and Policy Research Unit, NUI, Galway. His main area of research is international housing law as well as disability.
Dr. Ursula Kilkelly is a graduate of Queen’s University, Belfast. She is a lecturer in law at University College Cork. She has published research in international, British and Irish journals on the monitoring work of the Committee on the Rights of the Child and also on the rights of children under the European Convention on Human Rights. She has recently become strongly engaged on the issue of the rights of children with disabilities.
Joshua Castellino currently lectures at the Irish Centre for Human Rights, Faculty of Law, NUI, Galway. He completed his Ph.D. in international law at the University of Hull (UK) in 1998. He is currently engaged in research in the area of minority rights law and in teaching for the LL.M in International Human Rights Law.
Shivaun Quinlivan holds a B.A. and LL.B. from NUI-Galway, and an LL.M. from King's College London. She is a barrister at law. She works as a law lecturer at NUI, Galway and is a member of the Disability Law Policy and Research Unit.
Foreword
It has been one of my goals as High Commissioner to have more attention given to the human rights of persons with disabilities, and to have the United Nations system respond more effectively in this area. I am very pleased, therefore, that this study on human rights and disability was based on an initiative of the Commission on Human Rights.
In 2000 the Commission requested me as High Commissioner to examine what might be done to strengthen both the protection and the monitoring of the human rights of persons with disability. As a first step it was decided to commission a study on the human rights dimensions of disability. The study would, it was hoped, clarify the conceptual and policy issues as well as report on both the experience and the potential of the international treaty bodies in monitoring and advancing protection.
This comprehensive and well researched study of human rights and disability is the result. I warmly welcome the study and commend it to all concerned with human rights and disability. On behalf of the Office of the High Commissioner for Human Rights I thank the authors and researchers who have worked together to provide us with an indispensable and practical resource for the use of international and national human rights mechanisms to defend the human rights of those with disabilities. At the same time, the book will be an essential foundation for the further initiatives on protection being considered by the General Assembly of the United Nations. I wish to acknowledge the support of the Government of Ireland, which made the project possible.
Mary Robinson
High Commissioner for Human Rights
Acknowledgements
We would like to acknowledge the considerable assistance and moral encouragement received from the following; Dr. Christine Whyte, Policy Officer, National Disability Authority of Ireland; the staff of the Office of the United Nations High Commissioner for Human Rights, Geneva; Mr. Don Wills, President, International Disability Alliance (IDA); Mr. Stephan Tromel, Director, European Disability Forum; Mr. Bengt Lindqvist, United Nations Special Rapporteur on the Standard Rules for the Equalization of Opportunities for Persons with Disabilities; Mr. Miguel-Angel Cabra de Luna (ONCE Foundation, Madrid); Mr. Eric Rosenthal (Mental Disability Rights International); Dr. Arthur O’Reilly, former Director, National Disability Authority of Ireland; Dr. Kate Quinn, Department of Spanish, NUI, Galway; Mrs.Agnes O’ Farrell, Disability Liaison Officer, NUI, Galway; Sabine Decker, Gabriel Hille, Barbara Duncan and Annegret Deyle (Bochum, Germany).
Executive summary ______1
Executive summary
The present study is about the current use and future potential of the UnitedNations human rights instruments in the specific field of disability.
Over 600 million people, or approximately 10percent of the world’s population, have a disability of one form or another. Over two thirds of them live in developing countries. Only 2percent of disabled children in the developing world receive any education or rehabilitation. The link between disability and poverty and social exclusion is direct and strong throughout the world.
A dramatic shift in perspective has taken place over the past two decades from an approach motivated by charity towards the disabled to one based on rights. In essence, the human rights perspective on disability means viewing people with disabilities as subjects and not as objects. It entails moving away from viewing people with disabilities as problems towards viewing them as holders of rights. Importantly, it means locating problems outside the disabled person and addressing the manner in which various economic and social processes accommodate the difference of disability or not, as the case may be. The debate about the rights of the disabled is therefore connected to a larger debate about the place of difference in society.
The disability rights debate is not so much about the enjoyment of specific rights as it is about ensuring the equal effective enjoyment of all human rights, without discrimination, by people with disabilities. The nondiscrimination principle helps make human rights in general relevant in the specific context of disability, just as it does in the contexts of age, sex and children. Nondiscrimination, and the equal effective enjoyment of all human rights by people with disabilities, are therefore the dominant theme of the longoverdue reform in the way disability and the disabled are viewed throughout the world.
The process of ensuring that people with disabilities enjoy their human rights is slow and uneven. But it is taking place, in all economic and social systems. It is inspired by the values that underpin human rights: the inestimable dignity of each and every human being, the concept of autonomy or selfdetermination that demands that the person be placed at the centre of all decisions affecting him/her, the inherent equality of all regardless of difference, and the ethic of solidarity that requires society to sustain the freedom of the person with appropriate social supports.
The shift to the human rights perspective has been authoritatively endorsed at the level of the UnitedNations over the past two decades. This is best exemplified by the UnitedNations Standard Rules on the Equalization of Opportunities for People with Disabilities, adopted by the General Assembly in resolution 48/96 of 20 December 1993. The Rules are monitored by a UnitedNations Special Rapporteur, Bengt Lindqvist, who has received his mandate from the UnitedNations Commission for Social Development. The Rules, and especially the role played by the Special Rapporteur, continue to make a vital contribution to the process of raising consciousness about the human rights of persons with disabilities and in stimulating positive change throughout the world.
The UnitedNations human rights treaty bodies have considerable potential in this field but have generally been underused in advancing the rights of persons with disabilities. The study focuses on the bodies monitoring six main UnitedNations human rights treaties: the International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, the Convention on the Rights of the Child, the Convention on the Elimination of All Forms of Discrimination against Women and the International Convention on the Elimination of All Forms of Racial Discrimination. The main thesis of the study is that the process of disability reform that is taking place across the globe could be immeasurably strengthened and accelerated if greater and more targeted use were made of these instruments.
It has to be emphasized that the primary responsibility for ensuring respect for the human rights of persons with disabilities rests with States. That is, the use and value of the UnitedNations human rights machinery is vindicated by meaningful domestic reform. The human rights instruments provide not merely guidance, but place obligations on States parties to reform.
States parties are demonstrably moving in the direction of the human rights perspective on disability. Recent research shows that 39 States in all parts of the world have adopted nondiscrimination or equal opportunity legislation in the context of disability. States parties’ dialogue with the human rights treaty bodies is constructive in the context of their efforts to secure disability reform; a significant amount of good practice now exists on a worldwide basis which can be usefully propagated through the human rights treaty system.
The shift to the human rights perspective is also reflected in the fact that national institutions for the promotion and protection of human rights throughout the world have begun to take an active interest in disability issues. This is important since these institutions help in providing a bridge between international human rights law and domestic debates about disability law and policy reform. National institutions are strategic partners in the process of change, and their increasing engagement on the issue of human rights for persons with disabilities is a highly encouraging sign for the future.
People with disabilities themselves are now framing their longfelt sense of grievance and injustice into the language of rights. Isolated injustices need no longer be experienced in isolation. NGOs working with disability issues such as the collaborative project Disability Awareness in Action are beginning to see themselves also as human rights NGOs. They are beginning to collect and process hard information on alleged violations of the human rights of persons with disabilities. While still relatively limited, their human rights capacities are growing. A similar process of selftransformation is under way within traditional human rights NGOs, which are increasingly approaching disability as a mainstream human rights issue. This is important, since these NGOs have highly developed structures, and the development of a healthy synergy between disability NGOs and traditional human rights NGOs is not only long overdue, but inevitable.