“Let the World Know”
Report of a Seminar on Human Rights and Disability
Held at Almåsa Conference Centre, Stockholm, Sweden
November 5-9, 2000
Edited by Marcia Rioux
Published by the office of the UN Special Rapporteur on Disability
e-mail:
TABLE OF CONTENTS
Preface and Acknowledgements 4
I Introduction 6
II Background to the Seminar 7
III Timing of the Seminar: An Opportune Moment 9
IV Purpose of the International Seminar: From Rhetoric to Reality 10
V Organization of the Seminar 10
VI General Directions for Mainstreaming the Human Right of Persons with Disabilities 12
VII Developing an Overall Structure for Reporting Violations of the Human Rights of Persons with Disabilities 14
VIII Understanding What Amounts to an Infringement of Human Rights 15
IX Building a System for Dealing with Infringements of Human Rights 16
X Making it work: Developing Instruments for Documenting Infringements of Human Rights: The Five Working Groups Report 20
A. Documenting Individual Cases 21
1. The Context of Reporting Individual Cases of Infringement of Human Rights 21
2. Structures for Effective Reporting: The Role of a Human Rights Specialist 21
3. Procedural Issues 22
4. Types of information that need to be collected and recorded 23
B. Documenting Legal Cases/Jurisprudence 25
1. The Context of Documenting Legal Cases Related to Disability and Human Rights 25
2. Structures/Authority for Effective Reporting: A Global Database on the Internet 25
3. Procedural Issues 26
4. Information to be Collected and Recorded 27
C. Documenting the Media 28
1. The context of documenting human rights infringements by and in the media 28
2. Structure for effective reporting: A Disability Rights Media Watch (DRMW) 29
3. Procedural Issues: Optional Mechanisms 29
4. Information to be Collected and Recorded 30
D. Documenting legislation 32
1. The context of documenting human rights infringements in legislation 32
2. Structures for Effective Reporting: Options 33
3. Procedural Issues 33
4. Information to be collected and recorded 34
E. Documenting Programmes, Services and Practices 37
1. The context of documenting human rights infringements in the adoption and implementation of programmes, services and practices 37
2. Structures for Effective Reporting: The Role of a Comprehensive, Multi-dimensional Reporting Manual 38
3. Procedural Issues 38
4. Information to be collected and recorded: prototype of a manual 39
XII Concluding Remarks: From little acorns great oaks grow 45
ANNEXES
Annex A
- List of Participants (including observers, secretaries etc)………………………….. 48
Annex B
B. Seven pre-conference papers were prepared for the Seminar. They are attached.
Pre-paper 1: The Seminar: background, purpose and organization
(Marcia Rioux) ……….…………………………………………………………….. 53
Pre-paper 2: Recording human rights abuses against persons with disabilities: practical issues revealed by the Disability Awareness in Action Human Rights
Project (Richard Light) ……………………………………………………………...59
Pre-paper 3: Bioethics and disability (Rachel Hurst) …………………….……….. 65
Pre-paper 4: International human rights protections for institutionalised persons with disabilities: an agenda for international action (Eric Rosenthal) …….……… 68
Pre-paper 5: Disability rights and human rights: plunging into the ‘mainstream’?(Andrew Byrnes) …………………………...………………………. 84
Pre-paper 6: Promotion and enforcement of the rights of persons with disabilities:
a South African perspective – some ideas on the process of getting the violations (Jerry Nkeli)...………………………………………………………….…………….97
Pre-paper 7: Preliminary ideas and procedures for ensuring systematic
international collection of information (Anuradha Mohit and S. K. Rungta) ……..106
Preface and Acknowledgements
This report presents the outcome of an international seminar on human rights and disability, held 5-9 November 2000, at Almåsa Conference Centre, Stockholm, Sweden. The purpose of the seminar was to draft guidelines for more effective identification and reporting of violations and abuse of the human rights of persons with disabilities.
The seminar was funded by the International Disability Foundation and co-funded by Olof Palme International Centre and Swedish Committee for Rehabilitation. The office of the UN Special Rapporteur on Disability organised the seminar and the Special Rapporteur chaired the meeting.
Six major international disability organisations were represented. In addition, 20 experts in disability and/or hurman rights were individually selected. Dr. Marcia Rioux, Canada, accepted to serve as the rapporteur of the meeting and has compiled this report.
The main outcome of the seminar is a number of guidelines to establish a structure and to develop competence for collecting data and for reporting human rights violations and abuse against persons with disabilities to the UN human rights system. These guidelines concern national governments, the UN system in the human rights area and both national and international disability organisations. I am convinced that the implementation of these proposals means the creation of an effective system for exsposure of existing infringements of the human rights and persons with disabilities.
A short version of the report has been distributed to media and is available at the office of the UN Special Rapporteur on Disability.
I want to thank the funders, the seminar rapporteur, the participants and all other involved for their active contribution to the strengthening of human rights protection in the disability field, which will be possible through the seminar.
I sincerely hope that all concerned will consider these recommendations for implementation.
Stockholm, January 2001
Bengt Lindqvist
UN Special Rapporteur on Disability
“Let the World Know”, Report of a Seminar on human rights and disability held at Almåsa, Sweden November 5-9, 2000
This seminar is a vital step towards the full recognition and realization of the human rights of all persons with disabilities… We know that persons with disabilities frequently live in deplorable conditions, and face physical and social barriers, which prevent their integration and full participation in the community. As a result, millions of adults and children throughout the world are segregated, deprived of virtually all their rights, and sometimes lead wretched and marginalized lives. This is completely unacceptable.
The Universal Declaration of Human Rights refers specifically to the rights of persons with disabilities. Article 1 declares that all human beings are born free and equal in dignity and rights. There is a joint responsibility at the national and international level to ensure these rights are translated into concrete action.
Despite the adoption of the UN General Assembly of the World Programme of Action concerning Disabled People, and the adoption in 1993 of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, it is clear that a great deal needs to be done. I know that that is the main reason you are meeting this week. I feel it is time to look afresh at this issue and to identify ways of stepping up our joint efforts to secure the full range of human rights for persons with disabilities.
Let me add some questions to your agenda:
· How can persons with disabilities themselves speak up for their rights and make human rights a tool in their continuous struggle for dignity, equality and justice?
· How can we ensure that the rights proclaimed in international norms and legislation are translated into real improvements in the lives of persons with disabilities?
Mary Robinson, UN High Commissioner for Human Rights, Video Message to the International Seminar on Human Rights and Disability, Almåsa Conference Centre, Stockholm Sweden, Nov. 2000[1]
I Introduction
With those challenges, a video of Mary Robinson, United Nations High Commissioner for Human Rights opened an International Seminar on Human Rights and Disability, convened by Dr. Bengt Lindqvist, the United Nations Special Rapporteur on Disability. The meeting was held from November 5th – 9th, 2000 at Almåsa Conference Centre, Stockholm, Sweden.
Twenty-seven experts in human rights law and policy and disability rights law and policy attended the meeting. Six of the 27 participants who attended the meeting were appointed by the International Non-government Organizations (INGOs) [2] that constitute the UN Panel of Experts. The other 21 participants attended in their individual capacity at the invitation of Dr. Lindqvist. The twenty-seven experts were from 16 countries. In addition, there were seven observers and guests. Mr. Brian Burdekin attended as the special representative of Mary Robinson[3]. Ms. Akiko Ito of the United Nations (New York) programme on disability, Division for Social Policy and Development also participated in the seminar[4]. The list of participants (including Dr. Lindqvist, observers, assistants and interpreters and accompanying persons) is attached as Annex C. The International Disability Foundation funded the meeting with additional support from the Olof Palme International Center and the Swedish Committee for Rehabilitation.
Dr. Bengt Lindqvist, UN Special Rapporteur on Disability, chaired the Seminar. The Rapporteur of the seminar was Dr. Marcia Rioux of Canada. There were five working groups and they were facilitated by Dr. Richard Light (U.K.), Mr. Ragnar Aðalsteinsson (Iceland), Mr. Eric Rosenthal (U.S.), Ms. Mary O’Hagan (New Zealand) and Ms. Anuradha Mohit (India). The facilitators were supported by a secretariat from Sweden that included: Susanne Berg, Anne Froden, Erica Olsson, Erik Staaf, and Annica
Akerberg.
The purpose of the Seminar was to develop guidelines supporting disability NGOs in their work to identify and report human rights infringements and abuses. This report represents the results of this seminar, incorporating the views of those who attended.
Annex D provides a simplified description of the United Nations (UN) structure by way of a diagram for those who are not familiar with the structure and role of UN agencies and bodies.
II Background to the Seminar
There has been an increasing international recognition that disability is a human rights issue. There is also recognition that disability and disability-related exclusion and marginalization is a concern for the UN human rights bodies.
The World Programme of Action concerning Persons with Disabilities, adopted by the UN in 1982, recognized the responsibility within the UN system of addressing the human rights of persons with disabilities, in the following (and other) recommendation:
Organizations and bodies involved in the United Nations system responsible for the preparation and administration of international agreements, covenants and other instruments that might have a direct or indirect impact on persons with disabilities should ensure that such instruments fully take into account the situation of persons who are disabled. (para. 164)
In August 1984, the Sub-Commission on Prevention of Discrimination and Protection of Minorities appointed a Special Rapporteur, Mr. Leandro Despouy, to conduct a comprehensive study on the relationship between human rights and disability. In his report (1993), Mr. Despouy made it clear that disability is a human rights concern, in which the UN monitoring bodies should be involved. Included among his recommendations was the following:
After the Decade has ended, the question of human rights and disability should be kept on the agendas of the General Assembly, the Economic and Social Council, the Commission on Human Rights and the Sub-Commission as an item of constant concern and on-going attention.
The Committee on Economic, Social and Cultural Rights in 1994 assumed the responsibility for disability rights by issuing a General Comment No. 5, in which the Committee makes an analysis of disability as a human rights issue. The General Comment states:
The Covenant does not refer explicitly to persons with disabilities. Nevertheless, the Universal Declaration of Human Rights recognizes that all human beings are born free and equal in dignity and rights and, since the Covenant´s provisions apply fully to all members of society, persons with disabilities are clearly entitled to the full range of rights recognized in the Covenant. In addition, in so far as special treatment is necessary, States parties are required to take appropriate measures, to the maximum extent of their available resources, to enable such persons to seek to overcome any disadvantages, in terms of the enjoyment of the rights specified in the Covenant, flowing from their disability. Moreover, the requirement contained in article 2 of the Covenant that the rights ‘enunciated ¼ will be exercised without discrimination of any kind’ based on certain specified grounds ‘or other status’ clearly applies to discrimination on the grounds of disability.
At the 54th session of the UN Commission on Human Rights in March/April 1998 the Commission adopted resolution 1998/31, in which the Commission made a series of statements and recommendations for future development in this area. Resolution 1998/31 was a principal breakthrough and a general recognition of the UN responsibility for human rights and persons with disabilities. Therefore, expectations were high that finally things would start to develop. However, in the two years following the adoption of the Commission resolution, there was little follow-up. This was a major concern when the Commission on Human Rights again discussed human rights and disability at its 56th session in April 2000. As a result of the discussion the Commission adopted another resolution (2000/51), which incorporated and expanded the recommendations of Resolution 1998/31.
In the first operative paragraph the Commission recognizes the UN Standard Rules as an evaluative instrument to be used to assess the degree of compliance with human rights standards concerning persons with disabilities.
[The Commission] recognizes that any violation of the fundamental principle of equality or any discrimination or other negative differential treatment of persons with disabilities inconsistent with the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities is an infringement of the human rights of persons with disabilities. (para. 1, Resolution 2000/51)
Further, the Commission encourages all the treaty bodies to monitor the compliance of States with their commitments in order to ensure full enjoyment of rights by persons with disabilities. Governments are urged to cover fully the question of human rights of persons with disabilities, when reporting under the relevant United Nations human rights instruments.
[The Commission] invites all the human rights treaty monitoring bodies to respond positively to its invitation to monitor the compliance of States with their commitments under the relevant human rights instruments in order to ensure full enjoyment of those rights by persons with disabilities, and urges Governments to cover fully the question of the human rights of persons with disabilities in complying with reporting obligations under the relevant United Nations human rights. (para. 11, Resolution 2000/51)
In addition, the following operative new paragraph was added which reflects the recognition of the urgent need for action.