Foreword and Executive Summary

Foreword and Acknowledgements

I am pleased to introduce Disability Rights Promotion International (D.R.P.I.) and present this report summarizing the findings of the project’s initial research phase. D.R.P.I. is envisioned as a three-phase project resulting in the establishment of an international system to monitor the equal enjoyment of human rights by people with disabilities. The Phase I research identified the disability rights monitoring activities currently underway, the monitoring and training resources available, and the opportunities for using monitoring data to advance the human rights of people with disabilities within the United Nations human rights system and regional human rights systems.

During Phase 1, and currently as we begin Phase 2, D.R.P.I. is exploring opportunities for collaborative partnerships for training and monitoring. With the background research completed and with ongoing efforts to establish partnerships, D.R.P.I. is eager to embark on the next phase of the project. Phase 2 will confirm partnerships, develop resources for capacity building, and support disability rights monitors in several regions of the world. While the Phase 1 research will guide these activities, the project may develop in unanticipated ways. This endeavour is evolutionary in nature. The opportunities and expertise highlighted in this report suggest diverse avenues and methods for raising awareness about disability rights and for capacity building for monitoring. Given the scope of the project, its goal of creating sustainable monitoring activities, and D.R.P.I.’s commitment to collaboration, D.R.P.I. is open to various methods of achieving the project’s goals and is receptive to new ideas. Phase 2 activities will be informed by many sources, including the experience of the disability movement, the strengths and interests of partner organizations, and the results of ongoing outreach and consultation. I ask that you send D.R.P.I. your comments on this report and your ideas for moving forward.

This stage in this ambitious project could not have been reached without sufficient funding to support the research and outreach activities. Thanks to the Swedish International Development Co-operation Agency for its support of the project’s goals and for funding Phase 1.

This report is the result of dedicated work by international expert researchers and the D.R.P.I. project team. I would like to acknowledge the contributions of Annika Akerberg, Christian Courtis, Yvonne Peters, and Richard Light who each prepared a background paper for D.R.P.I.. Also, William Rowland of the South African National Council for the Blind and the World Blind Union shared his expertise by providing initial guidance for the monitoring tools research.

D.R.P.I. Advisory Committee members found time within their extremely demanding schedules to review this report. I thank them for their comments and insights and look forward to their continued involvement as D.R.P.I. launches Phase 2.

Bengt Lindqvist

Co-Director, D.R.P.I.

United Nations Special Rapporteur on Disability, 1994-2002

October 2003

Executive Summary

Introduction

This report is prepared and published by Disability Rights Promotion International (D.R.P.I.) as a review of research conducted to inform the development of an international disability rights monitoring system. This research was undertaken in the context of growing international acknowledgement of disability as a human rights issue, as demonstrated by recent resolutions of the United Nations’ Commission on Human Rights reaffirming government responsibility for the protection of the rights of people with disabilities and the UN role in promoting developments in this area. Since disability rights – the equal effective enjoyment of all human rights by people with disabilities – are a relatively new dimension of human rights promotion, much needs to be done to develop awareness and build capacity both within the U.N. system and within the community of non-governmental organizations (N.G.O.s). To strategize on awareness raising and capacity building, Dr. Bengt Lindqvist, U.N. Special Rapporteur on Disability, convened an international seminar at the Almåsa Conference Centre, Stockholm, Sweden, in November 2000 (the Almåsa Seminar). Twenty-seven experts from all regions of the world participated. The seminar examined measures of strengthening the protection and monitoring of the human rights of people with disabilities. Disability Rights Promotion International (D.R.P.I.) emerged directly from the seminar and aims to establish a human rights monitoring system to address disability discrimination around the world.

To achieve the long-term goal of the establishment of a disability rights monitoring system, D.R.P.I. intends to facilitate capacity building and work in cooperation with existing disability organizations, international organizations interested in human rights, and with development organizations. The main purpose of monitoring is to credibly gather and process data to effect change – whether locally, nationally, or internationally. International human rights standards are the benchmark to evaluate social and legal conditions and individual circumstances. Monitoring disability rights would provide credible facts to support advocates in articulating disability issues and calling for democratic change, to support governments in implementing changes, and to raise the awareness of courts, statutory human rights bodies, the media, and all agents of democratic change in society.

The Almåsa Seminar elaborated guidelines for identifying and reporting human rights violations and abuse against people with disabilities. The seminar identified five separate areas that must be monitored for human rights abuses: individual violations of disability rights, legislation and legislative frameworks, case law, government programmes and practices, and finally, media imagery and coverage. These five areas of monitoring have been adopted as the central work of the D.R.P.I. project. It is anticipated that effective monitoring in these areas will expose the extent of discrimination faced by people with disabilities, providing invaluable information and momentum for change.

Phase 1 Research Findings

Background

Chapter 1 of this report provides the project background, context and methodology. The first phase of the D.R.P.I. project involved an inventory and analysis of:

• international human rights mechanisms with the potential to be used for monitoring disability rights;
• tools currently used for international human rights monitoring; and
• current training resources used in human rights education and in training for human rights monitors.

The Phase 1 inventories confirmed the need to raise awareness and build capacity related to disability rights. While there are opportunities for promoting disability rights within the existing international and regional human rights systems, individual complaints are not advancing to the international level and treaty monitoring bodies devote insufficient attention to disability issues when monitoring State compliance with treaty obligations. Available human rights monitoring tools do not refer to disability rights and few human rights education resources adequately cover disability issues.

International Human Rights Monitoring Mechanisms

Chapter 2 reviews the potential use of international human rights treaties to advance disability rights. Both the individual complaints procedures and State reporting procedures of the seven major human rights treaties offer promising opportunities for disability rights advocacy. In particular, the relevant non-discrimination provisions of the various U.N. human rights treaties apply to all human beings and thus, apply in the context of disability. The application of human rights treaties in the disability context was made clear by General Comment No. 5 of the Committee on Economic, Social and Cultural Rights. The General Comment states that the guarantee of the right to enjoy all the rights in the International Covenant on Economic, Social and Cultural Rights without discrimination extends to discrimination on the basis of disability. Efforts to mainstream disability issues into the monitoring mechanisms of the major international human rights treaties would ensure that advocates and treaty monitoring bodies are mindful of disability rights when reviewing government compliance with human rights obligations.

Awareness raising and capacity building to facilitate the use of the international and regional human rights systems by people with disabilities would increase understanding of disability rights in the long-term. Specific treaty provisions particularly relevant for the protection of disability rights can be identified and used in advocacy efforts. Greater knowledge about the reality faced by people with disabilities coupled with increased advocacy using a human rights framework would assist governments in understanding disability rights and the extent of their human rights obligations.

Disability Rights Monitoring Tools

Chapter 3 summarizes the research on human rights monitoring tools. The research sampling of monitoring tools (intake forms, questionnaires, interviews, urgent action forms, complaint forms, and treaty guidelines) revealed that most of the available tools are woefully silent or inadequately developed with respect to the experience of disability discrimination. However, useful models were identified, for example:

• monitoring manuals and guides such as the U.N. Training Manual on Human Rights Monitoring which contains in-depth advice and information, as well as a sample data form, for the use of interviews as a tool for compiling data on human rights violations;
• treaty assessment guidelines and detailed assessment tools such as the Convention on the Elimination of All Forms of Discrimination Against Women (C.E.D.A.W.) Assessment Toolwhich is composed of two kinds of assessments: a paper review of State laws and personal interviews with groups and individuals on the day-to-day impact of laws; and
• human rights audits assessing the progress of implementation of specific standards, e.g. audits used for HIV/AIDS advocacy to assess government actions in implementing theInternational Guidelines on HIV/AIDS and Human Rights.

These resources provide information about the type of information gathered through human rights monitoring and the various methods used.

Disability Rights Training Resources

Chapter 4 provides an overview of the inventory of human rights training resources. The research identified materials and courses suitable for adaptation to the disability rights context or for use as resources for general human rights education, for example, on the use of the international and regional human rights systems. Training organizations that are potential partners were also identified. The materials were analyzed to assess their content, purpose, and audience. The research findings indicate that three training courses would facilitate capacity building for disability rights monitoring:

• an introduction to a human rights approach to disability
• an explanation of the international and regional human rights systems and opportunities for disability rights advocacy
• a 'how to monitor' course for disability rights monitoring of individual cases of disability rights violations, legislation, case law, government programmes and practices, and media imagery

Charting the Way Forward: Facilitating Disability Rights Monitoring

The Phase 1 research provides much-needed context for discussion of how to facilitate international disability rights monitoring. The assessment of advocacy opportunities within the human rights system and of available monitoring tools and training resources has highlighted existing expertise, models, and methodologies. The research has also confirmed the lack of disability-specific resources and the need to link disability rights advocates with human rights mechanisms, which may provide support in reaching human rights goals. Consideration of the way forward will emphasize:

• capacity building: capacity to understand disability rights as human rights, to engage with human rights instruments and mechanisms, and to monitor disability rights
• monitoring: establishing ongoing international collaborations and sustainable monitoring programmes in various locations internationally
• raising awareness and encouraging action: providing information to facilitate various groups to engage with the international and regional human rights systems using the monitoring data.

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