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
ii ________________________________________________________________________ Contents
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iv _______________________________________________________________________ Contents
Contents
Page
Note on contributors vii
Foreword ix
Acknowledgements x
Executive summary 1
Part 1
Background: The shift to a human rights framework of reference
Chapter 1 The moral authority for change: human rights values and the worldwide process
of disability reform 13
1.1 Human values – the human being as subject and not object 14
1.2 From values to rights: a system of freedom built on human values 19
1.3 The core problem: the “invisibility” of people with disabilities in the system of
freedom 19
1.4 Human rights as a “visibility” project in the context of disability 26
Chapter 2 The application of moral authority: the shift to the human rights perspective on
disability through United Nations “soft” law 29
2.1 Early United Nations General Assembly resolutions on disability 29
2.2 The emergence of the rights model in the 1980s: the World Programme of Action
(1982) 30
2.3 Influential United Nations studies and guidelines 33
2.4 The United Nations Standard Rules on the Equalization of Opportunities for
Persons with Disabilities (1993) 34
2.5. World conferences and disability 38
2.6 United Nations Commission on Human Rights resolutions and disability 40
2.7 United Nations expert seminars on disability 42
2.8 General Assembly resolution on a convention to promote and protect the rights
and dignity of persons with disabilities 45
2.9 Conclusions 46
Chapter 3 Building bridges from “soft law” to “hard law”: the relevance of the United
Nations human rights instruments to disability 47
3.1 The United Nations human rights treaty system 47
3.2 Navigating the United Nations human rights treaty system 49
Part 2
Evaluation of the current use of the United Nations human rights instruments
in the context of disability
Chapter 4 Disability and freedom: the International Covenant on Civil and Political Rights
(ICCPR) 53
4.1 The relevance of civil and political rights to disability 53
4.2 Enforcement and interpretation of the ICCPR in the context of disability 59
4.4 Disability as a human rights issue in the complaints procedures under the first
Optional Protocol to the ICCPR 72
Contents ________________________________________________________________________ v
4.5 Conclusions on the ICCPR and disability 75
Chapter 5 Disability and social justice: the International Covenant on Economic, Social
and Cultural Rights 79
5.1 An overview of the International Covenant on Economic, Social and Cultural
Rights 80
5.2 The general application of the ICESCR in the context of persons with a disability 82
5.3 The relevance of specific ICESCR rights in the context of disability 88
5.4 Case studies on the current use of the ICESCR in the context of disability 110
5.5 Conclusions on the ICESCR and disability 130
Chapter 6 The integrity of the person: the Convention against Torture and Other Cruel,
Inhuman or Degrading Treatment or Punishment and disability 133
6.1 An overview of the Convention against Torture and Other Cruel, Inhuman or
Degrading Treatment or Punishment 133
6.2 The general relevance of Convention norms in the context of disability 148
6.3 Case studies on the operation of the Convention in the context of disability 151
6.4 Conclusions on CAT and disability 163
Chapter 7 Gender and disability: the Convention on the Elimination of all Forms of
Discrimination against Women 165
7.1 Introduction to CEDAW 165
7.2 The general application of CEDAW norms in the context of disability 172
7.3 Case studies on the current use of CEDAW in the context of disability 178
7.4 Conclusions and future perspectives on CEDAW 188
Chapter 8 Disability and children: the Convention on the Rights of the Child (CRC) 191
8.1. Background to the Convention 191
8.2 The relevance of the CRC norms in the context of disability 192
8.3 Implementation of the Convention 200
8.4 Case studies on the current operation of the CRC in the context of children with
disabilities 208
8.5 The increasing prominence of the disability perspective in the CRC Committee 216
8.6 Conclusions on the CRC and disability 226
Chapter 9 Disability and racial discrimination: the International Convention on the
Elimination of All Forms of Racial Discrimination (CERD) 229
9.1 Background to the Convention 229
9.2 The Convention enforcement machinery 231
9.3 Relevance of ICERD norms in the context of disability 233
9.4 Case studies on State party reports with a disability dimension 239
9.5 Conclusions on CERD and disability 240
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
choices 243
10.1 Part I: Organizational details 245
10.2 Part II: Self-understanding of disability NGOs as human rights defenders
(questions 1-6) 246
10.3 Part III: Self-evaluation of human rights capacities (questions 7-18) 249
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10.4 Part IV: Current levels of DPO/INGO engagement with the United Nations
human rights machinery 256
10.5 Part IV: Outcome of engagement with the human rights treaty monitoring bodies 263
10.6. Part VI: The future 268
10.7 Conclusions on the NGO questionnaire 270
Chapter 11 National human rights institutions – catalysts for change 273
11.1 Level of disability awareness (questions 1-3) 274
11.2 The status of disability rights on the agenda of national institutions (questions 4-7) 275
11.3 The disability rights record of national institutions (questions 8-11) 277
11.4 Litigation on disability rights 279
11.5 Education and capacity-building (questions 15 and 16) 280
11.6 Disability and the law reform process (questions 17 and 18) 282
11.7 Conclusions 284
Chapter 12 Recommendations: Making the United Nations human rights machinery work
better in the context of disabiity 287
12.1 States parties – towards a more sustained focus on persons with disabilities as
the beneficiaries of the human rights treaties 287
12.2 Treaty monitoring bodies – towards the mainstreaming of disability 288
12.3 The Office of the High Commissioner for Human Rights – advancing disability
as a human rights issue 288
12.4 United Nations Commission for Human Rights – bringing disability onto the
agenda 290
12.5 National human rights institutions – enabling reform to come about 290
12.6 Civil society – disability NGOs as human rights NGOs 290
Chapter 13 Expanding the system: the debate about a disability-specific convention 293
13.1 Growing support for a thematic convention 293
13.2 A thematic convention as a way of enhancing the “visibility” of people with
disabilities in the human rights system 294
13.3 The practical benefits of a thematic convention 295
13.4 Dignity and equality as the key to the content of a thematic convention 296
13.5 The new freedom agenda and disability: the interdependence of all human rights 296
13.6 A thematic convention as an aid to the mainstreaming of disability in United
Nations human rights instruments 297
13.7 The 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.
viii _____________________________________________________________________________
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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
x _______________________________________________________________________________
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
The present study is about the current use and future potential of the United Nations
human rights instruments in the specific field of disability.
Over 600 million people, or approximately 10 per cent of the world’s population, have
a disability of one form or another. Over two thirds of them live in developing
countries. Only 2 per cent 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 non-discrimination 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. Non-discrimination, and the equal
effective enjoyment of all human rights by people with disabilities, are therefore the
dominant theme of the long-overdue 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 self-determination 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 United Nations over the past two decades. This is best exemplified by the
United Nations 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 United Nations Special Rapporteur, Bengt
Lindqvist, who has received his mandate from the United Nations 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.
2 ______________________________________________________________ Executive summary
The United Nations 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 United Nations
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 United Nations 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 non-discrimination 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 long-felt 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 self-transformation 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.
All in all, the time is right for a stock-taking of the current use and future potential of
the United Nations human rights instruments in the context of disability.
Executive summary ______________________________________________________________ 3
Aims of the study
The study has three main aims.
The first aim is clarify the relevance of the six United Nations human rights treaties to
disability. In order to do this, the study will identify the various obligations of States
parties under the treaties and explain how the relevant enforcement mechanisms work
in the context of disability. We hope that it will constitute a useful reference work for
all stakeholders, including the States parties, the treaty monitoring bodies, the Office
of the High Commissioner for Human Rights, national human rights institutions and
civil society. It does not purport to be exhaustive. It creates added value for the
existing literature by demonstrating the relevance of the human rights protections
provided for under the six treaties to disability. More refined analysis will be needed
as the debate moves on.
The second aim of the study is to review how the system actually works in practice
with respect to disability, by looking at how States parties report to the treaty
monitoring bodies on human rights and disability and how the treaty monitoring
bodies respond. A total of approximately 147 recent periodic State party reports were
examined. They were selected on the basis of the availability of documentation and to
ensure a reasonable geographic spread. No criticism of any State party is intended.
The object of this analysis was simply to derive some sense of how States parties saw
themselves as discharging their obligations in the specific context of disability.
Indeed, no criticism is intended of the treaty monitoring bodies. Their attention and
scarce resources are drawn in many different directions, and the fact that they have
developed a sense of the relevance of the various human rights treaties in the context
of disability attests to their understanding that disability is a human rights issue. While
our analysis with respect to the evaluative component of the study does not purport to
be scientific, it nevertheless provides a sufficient basis for general conclusions to be
drawn – conclusions that we hope will help to mainstream disability issues in a more
sustained and focused manner.
The third aim of the study – the main one – is to provide options for the future. As
such, it provides observations, comments and recommendations as to how the various
stakeholders might enhance the use of the six human rights instruments in the context
of disability. The study aims at strengthening the system, while arguing for the
adoption of a thematic convention on the rights of persons with disabilities. For a
variety of reasons, the authors conclude that such a convention is necessary and would
underpin – and not undermine – the existing instruments in the field of disability.
Outline of the study
The study is divided into three parts.
Part 1 examines the nature of the shift to the human rights framework of reference in
the context of disability. It is composed of three chapters.
Chapter 1 explains the relevance of human rights values and doctrine to disability. It
asserts that the core problem in the field of disability is the relative invisibility of
persons with disabilities, both in society and under the existing international human
rights instruments. It concludes that the main human rights challenge is
4 ______________________________________________________________ Executive summary
accommodating the difference of disability and making people with disabilities visible
within the treaty system.
Chapter 2 recounts briefly how the shift of perspective was given authoritative
expression in a wide variety of instruments adopted in the context of the
United Nations system over the past two decades. It sets the stage for an examination
of how the United Nations human rights treaty system is currently accommodating the
rights of persons with disabilities.
Chapter 3 presents the United Nations human rights treaty system and provides the
bridge between so-called “soft law” and “hard law”. One important operating
principle of the study is that it is necessary to cross over this bridge and to make full
use of the human rights treaties in the context of disability.
Part 2 of the study is an evaluation of the current use of the United Nations human
rights instruments, providing a detailed analysis of the actual and potential relevance
of each of the six human rights treaties in the context of disability. This part is
composed of six chapters corresponding to the six treaties.
The analysis contained in Part 2 is intended to be part expository and part evaluative.
The expository dimension involves making the contents of the treaties transparently
relevant in the context of disability. Each of the rights protected is examined and its
relevance elucidated. The evaluative part is made up of a series of case studies on how
the provisions of the respective treaties are applied in general in the context of
disability.
Chapter 4 deals with freedom and disability under the ICCPR. This treaty is looked at
first because the key ethic of the worldwide disability rights movement is freedom and
participation. In other words, what people with disabilities aspire to most is to have
access to the same rights – and civic responsibilities – as all other persons. Consistent
respect for the ICCPR rights of the disabled would not merely protect people with
disabilities against abuses, but would also be a huge help in breaking down barriers to
the mainstream. In the sample of States parties’ reports surveyed, many States
continue to report on disability as a welfare issue and not as a rights issue under the
ICCPR. The authors found approximately nine individual complaints addressing
disability issues submitted to the Human Rights Committee under the first Optional
Protocol to the Covenant. Most were found to be inadmissible. At least one complaint
has led to very positive case law on the treatment of prisoners with disabilities. In
essence, the Committee held that it is the duty of States parties to accommodate
prisoners with special needs. This shows an awareness on the part of the Committee
that it is not enough to treat all persons the same, but that added allowance (or
“reasonable accommodation”) may be necessary to make rights “real” for people with
disabilities. This positive normative development offers great promise for persons
with disabilities.
Chapter 5 deals with the ethic of social justice and disability in the context of
disability. Disability is one of the best areas in which to assert and prove the
indivisibility and interdependence of civil, political, economic, social and cultural
rights. Using formal law to break down barriers to the mainstream is necessary but not
sufficient. People with disabilities must be afforded freedom, but also the means to
take advantage of it. This can be done by providing relevant social supports and, in
Executive summary ______________________________________________________________ 5
particular, by respecting economic, social and cultural rights. The authors decided to
place this chapter after the one on the ICCPR in view of the standing danger that
ICESCR rights will be viewed as being of primary importance in the context of
disability since they are so obviously connected with social support. In the admirable
General Comment No. 5 on persons with disabilities adopted by the Committee on
Economic, Social and Cultural Rights in 1994, the Committee views the rights in the
Covenant as providing the indispensable means of empowering people with
disabilities in their own lives and providing ongoing support for a life of active
participation in society. The right to health (art. 12), for example, is interpreted by the
Committee as having a direct link to participation in society. In the sample of States
parties’ reports surveyed, States parties tend not to draw the link between ICESCR
rights and the achievement of the goals of independence, autonomy and participation.
Notwithstanding this, General Comment No. 5 remains a landmark and the Covenant
in general has a hugely important role to play in sensitizing all stakeholders to how
appropriate social supports and rights can best be used to break down barriers and
enable people with disabilities to participate in all spheres of life.
Chapter 6 deals with the important question of protecting people with disabilities
against torture and cruel, inhuman or degrading treatment under the Convention
against Torture. This is especially relevant to the many millions of people with
disabilities who live in institutions or in other types of residential care. Disability
reinforces the imbalance of power in many such institutions and heightens the
vulnerability of people with disabilities to abuse. Disability issues tend not to figure
prominently in the sample of periodic reports surveyed. One individual complaint
concerning the situation of disabled prisoners that was submitted to the Committee
against Torture (CAT) was ruled inadmissible on the grounds that domestic remedies
had not been exhausted.
Chapter 7 deals with the Convention on the Elimination of All Forms of
Discrimination against Women insofar as it is relevant to women with disabilities.
General Comment No. 5 refers to a tendency to think of people with disabilities as
genderless. The Committee on the Elimination of Discrimination against Women
(CEDAW) has itself adopted General Recommendation No. 18 on women with
disabilities which requests States parties to include information on women with
disabilities in their periodic reports with respect to their exercise of several rights
contained in the Convention. In the sample of periodic reports surveyed there was
little consistent reporting on the double discrimination experienced by women with
disabilities.
Chapter 8 deals with the Convention on the Rights of the Child insofar as it is relevant
to children with disabilities. The Convention is unique among the human rights
treaties in that it contains a specific article on disabled children (art. 23). This article
is, of course, without prejudice to the general applicability of all of the Convention’s
provisions to children with disabilities. The Committee on the Rights of the Child
(CRC) has an impressively high level of awareness of disability issues. In 1997, it
held an important day of general discussion on disabled children which has had a very
positive impact on how the Committee addresses the situation pertaining to children
with disabilities. The Committee seems to be well on the way to developing a
coherent perspective on children with disabilities.
6 ______________________________________________________________ Executive summary
Chapter 9 deals with another sub-group of the disabled, namely disabled persons who
also belong to racial or other minority groups. While such persons may be
discriminated against largely on account of their race, the possibility of double
discrimination cannot be discounted. Indeed, the phenomenon of double
discrimination on the ground of race and disability was expressly acknowledged at the
World Conference against Racism, Racial Discrimination, Xenophobia and Related
Intolerance. Many States parties already include information on discrimination on the
ground of disability on a regular basis in their periodic reports to CERD, generally by
providing background information on their general anti-discrimination laws. This
provides CERD with a useful opportunity for dialogue with States parties on double
discrimination.
Part 3 of the study outlines options for the future. It is composed of four chapters.
Chapter 10 contains the authors’ analysis of a detailed questionnaire that was sent out
to disability NGOs around the world. There were about 80 responses from
international NGOs, regional NGOs and domestic NGOs from every part of the
world. The response rate was good given the time constraints. It had been decided to
send the questionnaire to disability NGOs and not to traditional human rights NGOs
in order to gauge whether and how they address the issues as human rights issues and
what their views on the existing treaty system are.
An analysis of the responses reveals the extent to which the disability NGOs have
themselves made the transition to the rights-based perspective on disability. Many of
the NGOs that responded to the questionnaire stated that they saw themselves
primarily as human rights NGOs. Many of them use United Nations human rights
doctrine in their work. Some of them already have some experience of engagement
with the United Nations human rights treaty system and generally had positive things
to say about this experience. Most of them felt inhibited by a general lack of material
and human resources and were deterred by the seeming inaccessibility of information
about how the human rights treaties work in the context of disability.
These findings are highly positive. They show how the shift to the human rights
perspective is being mirrored in the self-understanding of the disability NGOs, who
are interested in engaging with the United Nations human rights machinery. They also
reveal factors inhibiting such engagement. The analysis of the findings could usefully
be complemented in the future by an analysis of how traditional human rights NGOs
are themselves beginning to absorb disability as a mainstream human rights issue.
Doubtless a convergence of perspective is now under way.
Chapter 11 looks at the experiences and views of national human rights institutions
and factors in their views. It contains the authors’ analysis of a questionnaire sent to
national institutions and, again, the response rate was good given the time constraints.
An analysis of the responses reveals that national institutions are in fact acutely aware
of the human rights perspective on disability. Many of them have already produced
important studies and reports on the question of the human rights of persons with
disabilities. Some of these reports have been highly influential in helping to reform
domestic disability law and policy. All of the respondent national institutions
expressed a keen interest in the field and also a willingness to step up their activities
in this regard. This is a highly positive and encouraging finding and augurs well for
the future.
Executive summary ______________________________________________________________ 7
Chapter 12 sets out a range of observations, comments and recommendations
designed to enhance the future use of the United Nations human rights system in the
context of disability. For the sake of completeness, they are addressed to a wide
variety of stakeholders in the field.
State practice with respect to periodic reporting on disability is clearly improving.
This is, no doubt, due to the increasing attention paid to disability and human rights in
the United Nations system over the past two decades and especially under the
United Nations Standard Rules on the Equalization of Opportunities for People with
Disabilities. With respect to the States parties, the authors make three
recommendations designed to ensure heightened visibility for disability in the treaty
system. Specifically, they recommend: (a) that States parties step up their efforts to
report regularly on the situation affecting the rights of persons with disabilities; (b)
that they consult with disability NGOs when compiling their respective periodic
reports, it being understood that final responsibility for reports rests exclusively with
the States parties; and (c) that they consider nominating persons with disabilities for
membership in the six treaty monitoring bodies.
The treaty monitoring bodies do an excellent job overall on the issue of disability
given their limited resources and the obvious need to deal with a wide variety of
issues and groups. Again, the spirit and language of the United Nations Standard
Rules has had an impact in this regard. The following recommendations are made in
the spirit of assisting the treaty monitoring bodies to enhance further their treatment of
disability issues. Specifically, the authors recommend: (a) that they emulate the good
practice of the Committee on Economic, Social and Cultural Rights and adopt general
comments on the nature of State obligations under the respective treaties in the
context of disability; (b) that they emulate the good practice of the Committee on the
Rights of the Child by setting aside a thematic day of discussion, or similar occasion,
on disability; (c) that the list of issues sent to States parties by those treaty monitoring
bodies that issue such documents more regularly request information on the
enjoyment of human rights by persons with disabilities, in keeping with the thematic
priorities to be set in general comments; (d) that the dialogue with States parties
feature disability issues on a more regular basis; (e) that concluding observations
contain references to disability, where necessary, in order to identify areas where
more sustained attention is required and to request more detailed information from
States parties in subsequent reports; (f) that concluding observations be used more
regularly to highlight good practice for the benefit of all the stakeholders.
The Commission on Human Rights and the Office of the High Commissioner for
Human Rights have demonstrated their engagement with the issue of human rights
and disability. This is important at the symbolic level, but it is also significant from a
practical point of view given the pivotal role played by the Office in the overall
United Nations human rights system. The authors’ recommendations in this regard are
geared towards enhancing this engagement. Specifically, they recommend that the
Commission on Human Rights encourage the Office: (a) to make knowledge
concerning the relevance and operation of the United Nations human rights system in
the specific context of disability more accessible by adding a disability-specific
dimension to its web site (with appropriate and extensive links to the relevant
activities of other sectors of the United Nations, the specialized agencies and national
institutions); (b) to plan, after consultation with the stakeholders, a series of more
8 ______________________________________________________________ Executive summary
focused thematic studies and practical manuals on subjects such as the human rights
of institutionalized persons, the right to education for disabled children, the principle
of non-discrimination and the value of human diversity in the context of genetics,
bioethics and disability, and the human rights issues connected with intellectual
disability; (c) to assign at least one staff member on a full-time basis to the question of
disability and human rights issues; (d) to indicate that it welcomes applications for
internships from disabled persons; (e) to play a role in stimulating university-based
human rights programmes to become more actively involved in human rights and
disability; (f) to take a leading role in advancing the cause of the human rights of
persons with disabilities within the wider United Nations system, with due regard to
the equal ownership of the issue by all relevant institutional stakeholders. It is
important that the human rights perspective on disability continue to be increasingly
mainstreamed throughout the United Nations system, including in the relevant
development activities. It is also important that the issue should be multi-tracked
among all the concerned entities. More guidance from OHCHR could aid
immeasurably in the process of mainstreaming, as well as enhance the contributions
of the various and diverse elements of the system. The authors also recommend that
the Office explore options for bringing together the treaty monitoring bodies to
discuss the relevance and the potential contribution of their respective treaties in the
context of disability.
With respect to the United Nations Commission on Human Rights, the authors
recommend that it maintain and enhance the process of mainstreaming disability as a
human rights issue in its work and that it give active consideration to the appointment
of a special rapporteur on the human rights of persons with disabilities. The authors
believe that there is a need for such an entity to raise the visibility of the disability
issue as a human rights issue and to provide a focal point for disability in the human
rights system.
With respect to the national human rights institutions, the authors recommend that
they actively consider forming a forum or working group on disability and human
rights. Such a forum would enable the national institutions to develop a deeper
understanding of disability as a human rights issue and enable them to exchange
valuable experiences.
With respect to civil society, the authors recommend that the disability NGOs
combine their resources and form an international Disability Human Rights Watch or
similar body that could help raise levels of awareness as well as human rights
capacities within the disability sector. Such a grouping should develop close ties with
the mainstream human rights NGOs in order to learn from their experiences and also
in order to influence them to adopt disability as a human rights issue. The authors
highlight good practice in the form of funding from the Swedish International
Development Agency for a project on the human rights of children with disabilities.
Given that the majority of people with disabilities live in developing countries, the
authors believe that other donor countries should fund human rights projects in the
area of disability as part of their development, democratization and human rights
programmes.
Chapter 13 deals with the possibility of augmenting the existing human rights system
in the context of disability with the adoption of a thematic treaty on the rights of
persons with disabilities. In November 2001, the General Assembly adopted a historic
Executive summary ______________________________________________________________ 9
resolution to establish an ad hoc committee, open to the participation of all Member
States, to consider proposals for a comprehensive and integral international
convention to protect and promote the rights and dignity of persons with disabilities,
based on the holistic approach in the work done in the field of social development,
human rights and non-discrimination and taking into account the recommendations of
the Commission on Human Rights and the Commission for Social Development.
The authors find the arguments for such a convention to be highly persuasive. It
would enable attention to be focused on disability and would tailor general human
rights norms to meet the particular circumstances of persons with disabilities. It would
add visibility to the disability issue within the human rights system. It would have
practical advantages for all the stakeholders inasmuch as States parties would be
clearer on their precise obligations in the disability field, and civil society would also
be able to focus on one coherent set of norms rather than six different sets of norms.
These advantages were long ago spelled out by Leandro Despouy, the Special
Rapporteur of the Sub-Commission, in his study on disability, Human Rights and
Disabled Persons, published in 1992.
The authors view such a convention as underpinning – and not undermining – the web
of existing human rights treaties insofar as they relate to disability. That is, such a
convention should enable the relevant treaty monitoring body to develop normative
expertise in the field, and this should, in turn, help to stimulate the mainstreaming of
disability into the existing human rights system. A convention would address
collectively people with physical, sensory, mental or intellectual disabilities. The
drafting process should provide an occasion for considering how best to use all human
rights – civil, political, economic, social and cultural – to achieve the goal of full
participation in society of people with disabilities. The convention should include
appropriate protections, especially for those persons with disabilities who are
institutionalized.
All in all, the United Nations is entering an exciting phase of its activities in the field
of human rights and disabilities. Disability issues are being brought home into the
human rights domain. The authors are confident that the range of suggestions and
recommendations contained in the study and outlined above will lead to more and
better use of the six human rights treaties in the context of disability. They are also
confident that a thematic treaty would immeasurably advance the rights of persons
with disabilities, while at the same time enhancing the capacity of the existing
instruments to respond appropriately.
– – –
Part 1
Background: The shift to a human rights framework
of reference
Chapter 1
The moral authority for change: human rights values and
the worldwide process of disability reform
Gerard Quinn, Theresia Degener
Disability is a human rights issue! I repeat: disability is a human rights issue.
Those of us who happen to have a disability are fed up being treated by the society and our
fellow citizens as if we did not exist or as if we were aliens from outer space. We are human
beings with equal value, claiming equal rights…
If asked, most people, including politicians and other decision makers, agree with us. The
problem is that they do not realize the consequences of this principle and they are not ready to
take action accordingly.
Speech by Bengt Lindqvist, Special Rapporteur on Disability of the United Nations
Commission for Social Development, at the nineteenth Congress of Rehabilitation
International, Rio de Janeiro, 25 – 30 August 2000
A clear perception of the values that underlie the human rights mission is needed to
understand the nature and significance of the switch to a human rights perspective on
disability. These values form the bedrock of an elaborate system of basic freedoms
supported and advanced by international human rights law. Disability challenges
society to live up to its values and sets international law the task of engineering
positive change.
In this chapter we examine these values and explain the system of fundamental
freedoms to which they give rise. We also explore the core problem of putting these
values into practice in the context of disability, a problem that stems largely from the
relative invisibility of people with disabilities in the past. They tended to be viewed as
objects rather than subjects in their own right and the legal protections normally
associated with the rule of law were either not applied at all or were severely
curtailed.
Seeing people with disabilities as subjects rather than objects entails giving them
access to the full benefits of basic freedoms that most people take for granted and
doing so in a way that is respectful and accommodating of their difference. It means
abandoning the tendency to perceive people with disabilities as problems and viewing
them instead in terms of their rights.
14 _____________________________________________________________ Part 1: Background
1.1 Human values – the human being as subject and not object
The core values of the human rights mission underpin a system of basic freedoms that
affords protection against the abuse of power and creates space for the development of
the human spirit. Four values – dignity, autonomy, equality and solidarity – are of
particular importance, both in general terms and in the context of disability.
(a) Human dignity and the social construct of disability
Human dignity is the anchor norm of human rights. Each individual is deemed to be
of inestimable value and nobody is insignificant. People are to be valued not just
because they are economically or otherwise useful but because of their inherent selfworth.
Recognition of the value of human dignity serves as a powerful reminder that people
with disabilities have a stake in and a claim on society that must be honoured quite
apart from any considerations of social or economic utility. They are ends in
themselves and not means to the ends of others. This view militates strongly against
the contrary social impulse to rank people in terms of their usefulness and to screen
out those with significant differences.
Dignity as a value has been a crucial factor in the switch to a human rights perspective
on disability. Owing to their relative invisibility, people with disabilities were often
treated in the past as objects to be protected or pitied. The crucial change came when
they saw themselves (and were seen by others) as subjects and not as objects.
The seventeenth-century English historian William Blackstone described women’s
loss of full legal personality on marriage as a form of “civil death”. The main aim of
reform ever since has been to restore to women all the indicia of legal personhood on
genuinely equal terms with men – to change their status from object to subject. Much
the same can be said of people with disabilities except that civil death in their case has
occurred either at birth or at the moment of disablement later in life.
The “medical model” of disability has frequently been contrasted in recent years with
the “human rights” model. The medical model focuses on persons’ medical traits such
as their specific impairments. This has the effect of locating the “problem” of
disability within the person. The medical model encapsulates a broader and deeper
social attitude – a tendency to problematize the person and view him/her as an object
for clinical intervention.
The human rights model focuses on the inherent dignity of the human being and
subsequently, but only if necessary, on the person’s medical characteristics. It places
the individual centrestage in all decisions affecting him/her and, most importantly,
locates the main “problem” outside the person and in society. The “problem” of
disability under this model stems from a lack of responsiveness by the State and civil
society to the difference that disability represents. It follows that the State has a
responsibility to tackle socially created obstacles in order to ensure full respect for the
dignity and equal rights of all persons.
Another way of making the same point is to describe disability as a “social construct”.
This idea is quite simple and straightforward although it is often clouded by
Chapter 1: Moral authority for change ____________________________________________ 15
theoretical analysis. The first premise of the “social construct” model is that human
difference is not innate but something socially constructed and applied through labels
such as “the disabled”. Thus, one is not born “black” or “a woman” or “disabled”.
One is labelled as such in relation to some unstated norm such as maleness, being
white or being able-bodied (for want of a better expression).
The second premise is that the norm in relation to which one is evaluated and labelled
(maleness, whiteness, being able-bodied) is generally not selected through a neutral or
disinterested process. Selection usually occurs through an apparatus of power whose
minimum goal is to preserve that power. Indeed many disability rights advocates
consider that “the disabled” should be used instead of “persons with disabilities”
precisely in order to highlight the fact that it is society which disables the person.
The third premise of the social construct model is crucial, namely that the social
construct of disability is used not only to set people apart but also to keep people
apart. All points of access to the structures of everyday life – the world of education,
of work, of the family or of social interaction – are established largely by reference to
the dominant norm, in this instance that of the able-bodied. As deviations or
differences from the arbitrarily selected norm are generally not catered for, difference
serves as a ground for subtle (and sometimes not so subtle) exclusion. For example,
the built environment is constructed for those who can walk and not for those who use
wheelchairs. The communications environment generally assumes a capacity to listen
and to speak. The education environment makes little allowance for different ways of
learning and so on.
A powerful link can be forged between the “social construct” model of disability and
the human rights perspective on disability. Society has ignored or discounted the
difference of disability in regulating the terms of entry into and participation in the
mainstream, thus excluding – or effectively excluding –10 per cent of any given
population. This is not merely irrational from an economic point of view; it also
violates the inherent dignity of all human beings.
To state the matter in positive terms, the end goal from the perspective of the human
rights model is to build societies that are genuinely inclusive, societies that value
difference and respect the dignity and equality of all human beings regardless of
difference. In this regard, the disability rights movement is very much in tune with a
deeper and broader movement to create genuinely inclusive societies for all. It has
been described as the “next generation” civil rights movement.
(b) Autonomy and creation of space for the
development of the human spirit
Autonomy as a value associated with dignity derives from the ancient Greek
commitment to autonomy or self-governance. It entails opening up a free or
uncoerced space for voluntary action based on a person’s conscience and freely made
life choices, while preserving comparable liberty for others.
The value of autonomy is based on the presumption of a capacity for self-directed
action and behaviour. It thus rests on the implicit image of a “morally free” person –
an image that has long been deeply contested. There are two main problems with this
ideal image in the context of disability. One is that society seems over-inclined in
16 _____________________________________________________________ Part 1: Background
many instances to conflate disability – especially intellectual disability – with a lack
of capacity for moral freedom. This presumption often rests on sheer prejudice. The
human rights perspective on disability involves a much more nuanced approach, one
that is not over-inclined to detect incompetence and that places equal emphasis on the
need for effective protection of the rights and interests of those proclaimed legally
incompetent.
The other problem is that society often fails to take seriously the autonomy of persons
with disabilities who enjoy full legal competence. Their life choices are not perceived
to be as worthy of social support as those of the non-disabled. Low expectations have
led to neglect of the material conditions that people with disabilities need to take
control of their lives and live as they wish. For the most part, societies have not done
enough to enable those with disabilities who have a clear capacity for moral freedom
to exercise their right of self-determination. It is one thing to have the ability to study
astrophysics despite disability – it is another to be able to do so in the absence of
accessible transportation.
(c) Equality – valuing difference
Human equality, a related value, is also central to the system of basic freedoms
postulated by human rights law. Its core premise is that all persons not only possess
inestimable inherent self-worth but are also inherently equal in terms of self-worth,
regardless of their difference. Thus, distinctions between persons stemming from
factors that are arbitrary from a moral point of view (race, gender, age, disability)
should be treated as having no rational foundation and therefore invalid.
This is not to say that there are no differences between people. In positive terms, it
means that a genuinely equal society is one that has a positive approach to and
positively accommodates human difference. Valuing human difference is the aim of
the “social construct” approach and is also validated by the human rights perspective.
It is crucially important to an understanding of international developments to realize
that there are at least three ways of understanding the concept of equality. The
interpretation chosen affects what one identifies as “wrong” in contemporary social
arrangements and what remedies are deemed appropriate.
1. The first interpretation of equality focuses on the need for even-handedness by
parliaments when they create inevitable distinctions in law and policy. This
interpretation of formal or juridical equality is, of course, vital and will continue to
form the bedrock of any understanding of equality. However, it is not sufficiently
attuned to the concrete needs of those who are in fact “different” or who are not
similarly situated.
On the other hand, to insist on strict equality between persons with disabilities and
other persons would be to ignore real differences. A formal anti-discrimination law,
for instance, may proscribe disability discrimination but fail to move beyond the
“equality as neutrality” philosophy and take the further vital step of requiring
“reasonable accommodation” of the difference of disability. This kind of “equality” is
plainly hollow. It confers illusory benefits and invites cynicism vis-à-vis the law.
Although the endeavour to accommodate real differences within a theory of equality
Chapter 1: Moral authority for change ____________________________________________ 17
may result in paradox and pose its own set of problems, it seems necessary to make
equality meaningful and to produce real change.
2. A second interpretation of equality is “equality of opportunity”. Most modern
thinking accepts the “equal opportunity model” as the most appropriate one in the
context of disability. According to this philosophy, factors over which a person has no
control and which are thus “arbitrary from a moral point of view” should not be
allowed to dictate that person’s life chances. Familiar examples are social status,
colour, gender and disability.
Taking the ethic of “equality of opportunity” seriously in the context of disability
implies calling for several forms of governmental action or intervention.
(i) Equality of opportunity entails tackling structural exclusion in such areas as
transport, social amenities, public services and communications. No
meaningful change is conceivable unless the social and economic processes of
civil society are structured more inclusively and opened up to persons with
disabilities on a genuinely equal basis. Such changes necessarily take time but
the main thing is to inaugurate an irreversible process of structural change
with clear goals and timetables.
(ii) Equality of o