Foreword & Executive Summary

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.

Chapter 1: Project Background

Context

The United Nations estimates that 600 million people, at least 10% of the world’s population, have some form of disability.1 People with disabilities face numerous barriers to their full participation in society. These barriers place them at greater risk of discrimination, abuse, and poverty. Governments’ failures to recognize the needs of people with disabilities and to eliminate barriers to equal rights perpetuate the social isolation and exclusion so often experienced by people with disabilities.

The exclusion of people with disabilities can be observed in different forms and to different degrees all over the world: lower or no access to compulsory education, and limitations for groups of people with disabilities in areas such as the right to parenthood, property rights, the right to access to courts-of-law, and political rights, such as the right to vote. Examples of abuse, violence, and miserable living conditions have been observed and documented at institutions, where millions of people with disabilities spend their whole lives.

Despite the fact that these and many other observations of the same kind are serious violations and infringements of fundamental human rights of boys, girls, women and men with disabilities, these problems, if dealt with at all, have been considered as issues of social development and not reported as violations of human rights.

However, recent years have seen a dramatic shift to an acknowledgement that people with disabilities have rights. The increasing international acknowledgement of disability rights as human rights began with the International Year of Disabled Persons (1981) and the adoption of The World Programme of Action concerning Disabled Persons2 by the United Nations General Assembly. The early 1990s saw the adoption of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities,3 and the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care.4

The United Nations Commission on Human Rights recently adopted resolutions reaffirming the responsibility of States to protect the rights of people with disabilities. The Commission discussed the human rights of persons with disabilities at its 54th session in March/April 1998 and as a result adopted resolution 1998/31, which recognizes that inequality and discrimination related to disability are violations of human rights.5 Resolution 1998/31 was a principal breakthrough and represents a general recognition of government responsibility for the protection of the rights of people with disabilities and the U.N. role in promoting developments in this area. The resolution makes a series of statements and recommendations of great importance for future development in this area. The Commission adopted a new resolution in 2000, reaffirming Resolution 1998/31 and calling for an examination of measures to strengthen the protection and monitoring of the human rights of persons with disabilities.6

Another important indicator of the growing attention to disability rights is a report examining the current use and future potential of United Nations human rights instruments in the context of disability.7 This report was commissioned and published by the U.N. Office of the High Commissioner for Human Rights, the United Nations office responsible for human rights protection and promotion. The report examines the work of the committees that monitor the major international human rights treaties and also assesses the protection of disability rights and the potential for strengthening that protection.

In December 2001, the General Assembly adopted resolution 56/168, establishing an Ad Hoc Committee to consider proposals for an international convention to protect and promote the rights and dignity of people with disabilities.8 This resolution is also a clear example of attention to disability rights at the international level. Two ad hoc meetings have been convened for governments to consider a disability rights treaty. A working group has been established to prepare a draft text.9 A disability rights treaty would create legally binding human rights obligations specific to the needs and situation of people with disabilities.

Concurrently with the process to draft a disability-focused convention, opportunities exist to develop a disability dimension in existing international, regional and national human rights systems. At a meeting hosted by the U.N. High Commissioner for Human Rights, with the participation of Dr. Bengt Lindqvist, U.N. Special Rapporteur on Disability, the over 30 State representatives and N.G.O. and U.N. agency participants agreed on a multifaceted approach to disability.10 They endorsed a “twin-track approach” whereby the drafting of a new convention should not be seen as an alternative to strengthening attention to disability within the existing international human rights system.11

The increasing international recognition of the human rights of people with disabilities is extremely important for improving the quality of life of people with disabilities and achieving equality and justice. This recognition comes at a time when a rights-based approach to development is also emerging as a new area in the human rights field. A human rights approach to development identifies the structural causes that marginalize particular groups, effectively depriving them of the benefits of development. Combining the human rights approaches to disability and to development will be highly relevant for people with disabilities in developing countries.

These significant events in the human rights field suggest it is an opportune time to increase the capacity and competence of all parties concerned – to strengthen the abilities of individuals to exercise their rights; to bring together the human rights movement and the disability movement; and to motivate the appropriate entities within the U.N. system, as well as governments and political parties around the world, to recognize violations of the human rights of people with disabilities and effectively address them to eliminate disability discrimination.

Furthering Disability Rights Advocacy

Disability rights are not a new set of human rights standards separate from standards set by international human rights treaties. Since human rights treaties and other instruments apply to all people, they should apply equally to people with disabilities. Many disability activists and the authors of this report use the term “disability rights” to refer to the equal effective enjoyment of all human rights by people with disabilities. Just as the struggle for women’s rights insisted that “women’s rights are human rights”, the human rights of people with disabilities must be recognized as within the existing human rights framework. Disability rights refer to the full range of human rights available to all, applied to effectively respond to the specific situation of people with disabilities.

While disability rights are not new rights, this is a relatively new dimension of human rights enforcement. Much needs to be done to develop awareness and build capacity relating to the equal enjoyment of human rights by people with disabilities. Capacity building is needed within the U.N.system, within governments, and within the community of nongovernmental organizations (N.G.O.s). To strategize on awareness raising and capacity building, Dr. Lindqvist, U.N. Special Rapporteur on Disability, convened an international “Seminar on Human Rights and Disability” at the Almåsa Conference Centre in Stockholm, Sweden, in November 2000 (“the Disability Rights Promotion International 4 Almåsa Seminar”). Twenty-seven experts from all regions of the world participated. Among them were representatives of all the major international disability organizations, representatives of the Office of the High Commissioner for Human Rights and the U.N. Secretariat, disability rights experts and activists, and experts on human rights. The seminar examined measures of strengthening the protection and monitoring of the human rights of people with disabilities.12 Disability Rights Promotion International (D.R.P.I.) emerged directly from the seminar and aims to establish a human rights monitoring system that will address disability discrimination around the world.

The Almåsa Seminar focused on the need for international monitoring to effectively address disability discrimination. Historically, disability has been approached as a medical issue, focusing attention on the individual and masking human rights infringements. Systemic human rights abuses against people with disabilities, such as horrific conditions in institutions and widespread sterilization policies, have been inadvertently uncovered through individual investigations, but an effective commitment to enforcing the equal human rights of people with disabilities requires a more organized approach to investigation and enforcement. A human rights approach to disability emphasizes the rights of people with disabilities and the ways social structures and environments exclude people with disabilities. A human rights approach also highlights the potential for social change to promote greater inclusion and respect for rights. Increased international attention and specific international human rights measures have directed attention to the plight of vulnerable groups such as women and children, and similarly, a focused approach is needed for disability.

Global monitoring in a range of social spheres will expose the extent of human rights violations experienced by people with disabilities, an essential first step in promoting change. International data will provide invaluable information and momentum for change, supplying evidence for the United Nations and State governments to take further action to eliminate abuses of the human rights of people with disabilities. Monitoring will support the efforts of people with disabilities to achieve justice, equality, self-determination, dignity and worth in their societies.

The Almåsa Seminar identified five areas to be monitored for human rights violations.13 D.R.P.I. has adopted these areas and organized them as “areas of focus” for comprehensive monitoring of the human rights of people with disabilities:

Individual Violations Focus:

Fact finding with respect to alleged individual violations of the human rights of people with disabilities

Monitoring human rights violations against people with disabilities will raise awareness of the nature and extent of violations and provide facts and evidence for advocacy efforts and improved government policies and laws. Violations in both the public and private sphere must be monitored to address the complex reality of people with disabilities and the interrelationships between government and the private sector. Monitoring individual cases can also effectively reveal patterns of discrimination that indicate more widespread systemic rights infringements.

Systems Focus:

Studying legislative frameworks

While laws may protect human rights, they may also violate human rights in some instances, either through a discriminatory provision or through silence on the rights of people with disabilities. Documenting the way laws violate or protect disability rights, and how relevant laws are implemented and enforced, will inform struggles for legal reform.

Tracking case law before the courts and statutory human rights bodies

Compiling and analyzing disability cases will generate evidence of how courts and other decision-making bodies, such as human rights commissions, address issues related to disability rights, interpret and enforce relevant laws, and use human rights law.

Analyzing general government programmes and practices

Beyond laws and their enforcement, a broad range of government action has a direct impact on the lives of people with disabilities. Documenting programmes, services and practices that violate human rights – either directly or indirectly – will provide evidence and awareness for change.

Media Focus:

Tracking media imagery and coverage of disability

The media has a powerful influence on the way disability is perceived and on the attitudes of the public towards people with disabilities. It is important to document myths and stereotypes perpetuated by media portrayals of persons with disabilities and also highlight effective reporting of disability issues.

Monitoring these areas independently is not sufficient. Simultaneous monitoring in these areas will provide a more comprehensive understanding and will take advantage of how the areas overlap in many ways. The scope of the monitoring projects suggested by the Almåsa Seminar reflects the emerging understanding of disability as a complex social and human rights issue. Individual experiences of violations are the impact of a number of levels of discrimination in several areas. With an awareness of the levels of discrimination, documentation of individual cases can reveal systemic discrimination in laws, policies and practices. A holistic approach, examining each of the five areas, provides a more complete picture of the human rights situation of people with disabilities. The areas of focus also suggest the multisectoral nature of a global disability rights monitoring project and the need to engage with a broad cross-section of collaborators, not only geographically, but in all relevant sectors.

Working in collaboration with partners from various sectors, D.R.P.I.’s central goal is to facilitate international disability rights monitoring, including the promotion and development of the infrastructure necessary for monitoring disability rights issues. D.R.P.I. also aims to provide information to assist disability advocates in engaging with the international and regional human rights systems. To achieve these goals, D.R.P.I. will work in cooperation with existing disability organizations, international organizations active 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. International human rights law is a means to foster change. The use of international legal mechanisms, such as individual complaints and State reporting procedures, highlights particular issues and can pressure States to improve laws, policies and practices. 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.

Scope and Expertise of Current Disability Monitoring Activities

As the shift to a human rights approach to disability has gained strength, projects have emerged to document human rights violations experienced by individual people with disabilities. While these projects vary in their scope, objectives, and methods, they demonstrate the essential role of information collection in supporting advocacy for the equal effective enjoyment of all human rights by people with disabilities.

Disability Awareness in Action (D.A.A.) Human Rights Database

Disability Awareness in Action (D.A.A.) is an international human rights organization that serves as a network for the exchange of information between people with disabilities and their representative N.G.O.s. D.A.A. promotes self-advocacy by people with disabilities and works to promote and protect disability rights. D.A.A. is a collaborative project of Disabled Peoples’ International (D.P.I.), IMPACT, Inclusion International, and the World Federation of the Deaf.

In 1999, the Human Rights Committee of the D.P.I. – Europe initiated a Disability Human Rights Network. The Network created a human rights documentation project and tackled the many important issues related to collecting disability rights data, securing data, and issuing reports. Now known as the D.A.A. Human Rights Database, this project is the first of its kind, a pioneer in documenting individual cases of human rights abuses against people with disabilities.

Initially the project trained volunteer coordinators from Finland, Germany, Italy, the Netherlands and Portugal. Volunteer monitors gathered information which was then compiled using a database run by D.A.A. The volunteer monitors are no longer monitoring as a project team, but information on human rights violations is provided by disability organizations, individuals, media reports, and various documents, including published reports and books. This information continues to be added to the database.14

The database now contains approximately 1,500 reports of abuse affecting well over 2 million people with disabilities. These cases include recent abuses – abuses having occurred since 1980 – as well as some violations which occurred decades ago. Of the cases relying on historical evidence, the focus is on systematic human rights violations affecting substantial numbers and state-sponsored or endemic violations. In many instances, for example holocaust atrocities and forced sterilization programmes, reliable evidence has only recently been uncovered.
Using the database, D.A.A. prepares reports and circulates them to people with disabilities, disability organizations, government agencies, nongovernmental organizations, and U.N. bodies and representatives, including the U.N. General Secretary, the U.N. High Commissioner for Human Rights, and the Special Rapporteur on Disability.

Inclusion Europe: Documentation of the Human Rights Situations of Persons with Intellectual Disabilities

Inclusion Europe initiated a documentation project with eight national organizations of people with intellectual disabilities in Bulgaria, Czech Republic, Estonia, Hungary, Macedonia, Poland, Romania and Slovenia. The aim was to strengthen the political capacity of national organizations of people with intellectual disabilities and their parents by assuring their active participation in decision-making processes and by introducing them to European disability policy. The project also aimed to raise the awareness of national governments and the European government about the lives of people with intellectual disabilities.

Using an information gathering instrument that was based on the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, researchers consulted statistical data, various publications and legislation, and conducted interviews with government representatives, people with intellectual disabilities, family members of people with intellectual disabilities, and disability organizations. The information gathered was compiled into eight country reports.15 The reports are organized into chapters which review information on particular subjects that are enumerated in the Standard Rules (including awareness raising, medical care, (re)habilitation, community-based support services, accessibility, education, employment, income maintenance and social security, family life and personal integrity, etc.).

Inclusion Europe intends the reports to serve as political lobbying documents at the national level and at the European Parliament. While the reports are not scientific data based on statistical information, they are strong evidence of the human rights violations that are experienced by people with intellectual disabilities in these Central and Eastern European countries. This initiative was recently expanded to other countries in Central and Eastern Europe and beyond. Efforts are underway to document the human rights situation of people with intellectual disabilities in Belarus, Lithuania, Latvia, and Slovakia.

International Disability Rights Monitor

The International Disability Rights Monitor (I.D.R.M.) is a project of the Center for International Rehabilitation which aims to document progress, problems and barriers experienced by people with disabilities, and to promote the use of international humanitarian law to protect the rights of people with disabilities.16 I.D.R.M. is working to create a baseline assessment of the rights of people with disabilities and the conditions in various countries. To undertake this assessment, I.D.R.M. developed a 90-question research guide focusing on disability rights issues, specifically: demographic statistics; legal protections; issues of inclusion in areas such as transportation, education, and employment; and the activities of disability organizations.

Nicaragua and El Salvador were chosen as test sites, and eight researchers (two in El Salvador and six in Nicaragua) gathered information over a six-week period using the research guide. Preliminary data from Nicaragua and El Salvador was published in the project’s first report in June 2003, along with essays on international disability issues and brief reviews of laws related to disability in a number of countries around the world.17

The next phase of the I.D.R.M. project focuses on countries in the Caribbean, Latin America and North America, and a report focusing on the Asia-Pacific region is also planned. The IDRM is using a network of local researchers from the disability community and civil society organizations such as human rights advocates, journalists, and scholars. This network of disability “researcher-advocates” are hired and trained to seek out, analyze and organize information related to disability in their respective countries. Researchers will consult written resources and conduct interviews and submit a report to regional coordinators who will translate, fact-check, and edit the material. Disabled Peoples’ International (D.P.I.) is acting as the regional coordinator for the Asia-Pacific region.

Mental Disability Rights International

Mental Disability Rights International (M.D.R.I.)18 is dedicated to monitoring the rights of people with mental disabilities worldwide. Based in Washington D.C., M.D.R.I. has regional offices in Budapest and Kosovo which conduct training for activists from Central and Eastern Europe.

Over the past ten years, M.D.R.I. has conducted investigations in 18 countries and published reports on Uruguay 1995), Hungary (1997), Russia (1999), Mexico (2000), and Kosovo (2002). An extensive archive of video material from these investigations resulted in a video documentary entitled Forgotten People. M.D.R.I. is currently conducting three ongoing investigations in Latin America and Eastern Europe and is planning a new investigation in the Middle East.

M.D.R.I.’s investigation reports are based on hundreds of interviews with people detained in institutions, as well as interviews with institution staff and policy makers. Internationally recognized disability rights standards, particularly U.N. General Assembly Resolutions, are used as the primary tools for assessment of human rights conditions. Domestic legislative protections and violations of international human rights conventions are also reviewed. The reports are prepared in close collaboration with activists in the countries investigated. In most cases, the reports are a first step in a long-term commitment to developing and working with a local mental disability advocacy movement. While the reports build from individual interviews, they also provide detailed recommendations for policy reforms.

Disability Rights Promotion International aims to add to and complement the efforts of these organizations. Following the direction of the Almåsa Seminar and mindful of the recommendations of the U.N. Human Rights and Disability report,19 D.R.P.I. seeks to support disability rights advocates to engage with the international and regional human rights systems and to gather the data necessary to document human rights abuses. Working collaboratively with local and national organizations, D.R.P.I. aims to facilitate data collection on the full range of disabilities and facilitate the use of human rights mechanisms to enforce the equal effective enjoyment of all human rights by people with disabilities.

Overview of D.R.P.I. Phase 1 Methodology

Various training resources and monitoring tools will be required for effective disability rights monitoring. D.R.P.I. proposes to facilitate the development of these capacity building resources to encourage and support systematic data collection on disability rights.

The D.R.P.I. project involves three phases. Phase I of this project began in May 2002 and received funding from the Swedish International Development Cooperation Agency (S.I.D.A.). The principal investigators and co-directors of the project are Bengt Lindqvist and Marcia Rioux.20 The coordination centre is located at York University in Toronto, Canada.

Phase 1 focused on initial background research to assess the opportunities for disability rights advocacy in the international and regional human rights systems and to determine available monitoring and training resources and any specialized resources needed. This report summarizes the results of Phase I research. It incorporates:

1. an inventory and analysis of international human rights mechanisms with potential to monitor disability rights;
2. an inventory and analysis of tools currently used for international human rights monitoring; and
3. an inventory and analysis of current training resources used in human rights education and in training human rights monitors.

The background papers produced during Phase 1 are the results of research using primary and secondary sources from both print and Internet resources. The study of international disability rights is largely undeveloped, which has meant that most of the research produced for this project involved a review of material relating to human rights more generally or other areas concerned with the equal application of human rights, such as women’s rights, and analysis of these materials within the disability context.

To supplement this documentary research and analysis, leading international human rights monitoring and human rights education organizations were contacted. The organizations which responded to inquiries provided information on the scope and content of training related to human rights monitoring; the tools used in monitoring human rights violations; whether or not their organizations had participated in any disability related proceedings before international or regional human rights treaty bodies or agencies; and details of other aspects of their work relevant to the D.R.P.I. project. The results of this research have been incorporated into this report.

Phase 2 of D.R.P.I. will build on the work completed in Phase 1. In collaboration with disability organizations and organizations active in human rights, D.R.P.I. will work to promote monitoring projects and disability rights training, including training for monitors and for effective use of the international human rights system. This second phase will use the existing expertise and knowledge of disability rights organizations and human rights organizations, as well as other resources.

Chapter 2: International Human Rights Monitoring Mechanisms and Opportunities for the Promotion and Protection of Disability Rights

Overview

This chapter provides a summary review of the capacity of the international human rights system to contribute to advancing the equal effective enjoyment of all human rights by people with disabilities, specifically: how the international human rights treaty system works and opportunities for promoting and protecting disability rights within that system. An examination of the different human rights treaties and their relevance to the disability context is followed by an analysis of the utility of these treaties in monitoring the five areas of focus. The State reporting procedures and individual complaints proceduresare emphasized since they are the central monitoring mechanisms for human rights treaties and provide opportunities for advancing the equal rights of people with disabilities.

Since there is currently no specific treaty protecting disability rights and explicit reference to disability in the major human rights treaties is rare, a central challenge for devising a strategy to monitor the rights of people with disabilities is to link the general human rights treaties with specific international disability standards, such as the Standard Rules for the Equalization of Opportunities for Persons with Disabilities.21 This challenge could be met in several different ways and two key options for mainstreaming disability rights will be reviewed: (1) identifying and relying upon the explicit references to disability rights in human rights treaties or (2) interpreting the general provisions of the treaties to apply to the situation and needs of people with disabilities.

The Applicability of International Human Rights Monitoring Mechanisms to the Disability Context

International Human Rights Treaties

Human rights ‘treaties‘, also called covenants or conventions are legally binding agreements under international law. By ratifying or acceding to a treaty, a State accepts an obligation to carry out the terms of the treaty. Treaties are the primary source of international law, together with customary international law (rules which evolve from the consistent practice of States). While there have been many human rights treaties and other instruments adopted at the international level, seven United Nations human rights treaties form the centerpiece of the U.N. human rights system:

• the International Covenant on Economic, Social and Cultural Rights (I.C.E.S.C.R.)22
• the International Covenant on Civil and Political Rights (I.C.C.P.R.)23 and its two Optional Protocols
• the International Convention on the Elimination of All Forms of Racial Discrimination (C.E.R.D.)24
• the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (C.A.T.)25
• the Convention on the Elimination of All Forms of Discrimination against Women (C.E.D.A.W.)26and its Optional Protocol
• the Convention on the Rights of the Child (C.R.C.)27 and its two Optional Protocols
• the International Convention on the Rights of All Migrant Workers and Members of Their Families (M.W.C.).28

In addition to these international treaties, there are regional treaties for Europe, the Americas, and Africa:

• the European Convention for the Protection of Human Rights and Fundamental Freedoms29 and its Additional Protocols, and the European Social Charter30
• the American Convention on Human Rights31 and its Additional Protocol on Economic, Social and Cultural Rights32
• the African Charter on Human and Peoples’ Rights33 and its additional protocols.

There are additional regional human rights treaties, dealing with specific themes (such as torture and violence against women), at least one of which, the Inter-American Convention for the Elimination of All Forms of Discrimination against People with Disabilities,34 is directly focused on people with disabilities.

There are also a number of relevant treaties adopted under specialized agencies of the United Nations. For example, the International Labour Organization has adopted a number of conventions relating to employment and social protection, including I.L.O. Convention Number 111 on discrimination in occupation and employment, and Convention Number 159 on the vocational rehabilitation and employment of disabled persons.35 The United Nations Educational, Scientific and Cultural Organization (U.N.E.S.C.O.) has adopted the Salamanca Statement and Framework for Action on Special Needs in Education reaffirming the right to education and urging the implementation of inclusive education as a law or policy.36

Presently, there is no internationally binding instrument specifically devoted to the rights of people with disabilities. Although efforts toward the drafting of an international treaty devoted to the rights and dignity of people with disabilities are under way, the process for the adoption and eventual entry into force of such an instrument will likely take some years, based upon the experience with the development of other international human rights treaties. Given the length of this process, it is crucial to use other approaches to ensure the development of international human rights standards related to disability, including the use of current international and regional instruments to the fullest extent possible.

Monitoring Mechanisms

When governments indicate their acceptance to be bound by a treaty (generally by ratification following signature, or by accession), the State becomes a ‘party’ to the treaty (State party) and is formally bound under international law to carry out obligations contained in the treaty. In the case of a human rights treaty, this normally involves general and specific obligations to respect, protect and fulfill treaty rights. The seven major international human rights treaties mentioned above each have one or more mechanisms to monitor governments’ implementation of the duties to which they agreed by becoming parties to the treaties. Each treaty creates a committee, also known as a treaty monitoring body, – or collectively as ‘the U.N. human rights treaty bodies’ – and specifies the committee’s composition and functions.37

The treaties provide for two primary mechanisms38 to monitor government compliance with human rights obligations: State reporting and individual complaints.

(i) State Reporting Procedure: By becoming a party to one of the U.N. human rights treaties, a government accepts an obligation to report periodically to the relevant treaty monitoring body, providing detailed information on the human rights situation in its country and on the progress in implementing its obligations under the specific treaty. Reports are usually organized according to the sequence of the articles in the treaty and monitoring bodies have guidelines that outline the information and detail required. The presentation of a report is ideally a dialogue between the government and the treaty monitoring body. The report is presented, further information and clarifications are requested, and finally, an oral presentation is made before the monitoring body where questions are asked and answered. The process ends with the treaty monitoring body producing a document with its concluding observations. These observations note accomplishments, identify areas of concern, and often suggest ways the State can take action to improve compliance with its human rights obligations.

The treaty monitoring bodies encourage governments and N.G.O.s to engage in debate and discussion of the government report and in the presentation process before the committees. As a means of participation, N.G.O.s may prepare their own reports to assist the monitoring body by presenting information that is not included in the government report. These N.G.O. reports are referred to as ‘shadow reports’ or ‘parallel reports‘. These reports provide crucial information to treaty monitoring bodies and the number of N.G.O.s engaging in the State reporting process has increased dramatically over the past few decades. N.G.O.s can also play an important role in publicizing the concluding observations through the local media and using the concluding observations as a lobbying tool.

(ii) Individual Complaints Procedure: Some human rights treaties have an individual complaint system, in addition to the reporting mechanism. The complaint systems allow individuals, groups of individuals, and organizations representing individuals to file complaints of human rights violations. Complaints can be filed against governments that have accepted the complaint procedure as part of their treaty obligations.39 The International Covenant on Civil and Political Rights, the Convention on the Elimination of All Forms of Discrimination Against Women, the Convention against Torture and the International Convention on the Elimination of All Forms of Racial Discrimination all have mechanisms for filing complaints.40 Generally, efforts must have been made to resolve the issue through national human rights bodies or other appropriate institutions and the national courts before a complaint will be heard at the international level (the “exhaustion of domestic remedies” rule). Written details must be provided on the facts of the case, identifying the particular treaty rights which have been violated. The treaty monitoring body normally deals with the complaint by first determining if it is admissible, primarily based on whether there are no further opportunities to address the complaint at the national level and whether an actual violation of a treaty right has been alleged. If the complaint is admitted, the government involved will have an opportunity to respond in writing, more details may be requested from the individual or group filing the complaint, and the monitoring body may hear oral presentations and then make a determination on the matter.

Guides for Parallel Reports to Treaty Monitoring Bodies and for Individual Complaints

Increasingly, N.G.O.s are using these international human rights mechanisms to pressure governments to comply with their human rights obligations. Submitting parallel reports, or ‘shadow reports’, when a State is being reviewed by a treaty monitoring body offers an effective method of providing the treaty monitoring body with a grassroots or civil society perspective on government compliance with human rights obligations.

To  facilitate the submission of parallel reports, guideline documents are available. These documents generally provide an explanation of the content of a human rights treaty and the applicable monitoring procedures. For example, A Guide for Non-Governmental Organizations Reporting to the Committee on the Rights of the Child is a step-by-step guide for N.G.O.s preparing a parallel report for the Committee on the Rights of the Child.41 This guide provides details on how to prepare a report, an outline of the procedures concerning N.G.O. presentations at the treaty body meetings, and procedures for follow-up action. The C.E.D.A.W. Commentary and Guidelines42 explains the meaning of each article of the Convention on the Elimination of All Forms of Discrimination Against Women (C.E.D.A.W.) and contains, where available, guidance from the C.E.D.A.W. Committee on how to interpret certain language in a given article. It also includes some examples of government compliance or non-compliance with particular articles of the treaty.

Individual complaints bring attention to specific human rights violations committed by States. A recent guide to complaints at the international level provides an overview of the available complaint mechanisms, explains how the mechanisms work and outlines the procedural considerations that must be addressed.43 The Office of the High Commissioner for Human Rights has also published a fact sheet on human rights complaint procedures.44

Other Relevant Human Rights Agreements and Mechanisms

The thematic mechanisms or special procedures of the U.N. Commission on Human Rights are also an important international mechanism to consider for the advancement of the equal enjoyment of human rights by people with disabilities. Currently, 26 expert mandates (Special Rapporteurs and Working Groups) appointed as independent experts by the Commission work in their personal capacity to investigate relevant human rights themes such as health, food, education, adequate housing, torture, violence against women, internally displaced persons, and extreme poverty.45 Most are able to intervene with governments on individual cases, make general recommendations in their annual reports to the Commission on Human Rights, produce specific reports on particular aspects of their mandate, and visit countries to produce a country report where governments agree to this process. Use of a thematic approach to human rights issues is a growing trend at the Commission on Human Rights and may be a valuable focus for integrating disability issues.

International organizations have also developed many non-binding human rights agreements that are valuable documents, including declarations, standards, guidelines, principles and model laws. While technically ‘soft law‘ instruments are not in themselves legally binding on States in the same way as treaties (although they may become so if they become part of customary international law), they are usually adopted by consensus by an intergovernmental body and in some cases are adopted with heads of State or foreign ministers present. Thus the record of adoption, as well as the drafting history of these so-called ‘soft law’ documents, will indicate that those who agreed to the instruments intended to be held accountable to them. Declarations and action platforms can be considered highly persuasive statements of the policy of States, accepted at the highest levels of government. Also, as will be discussed below, there are several ways in which these ‘soft law’ instruments can be a valuable tool in interpreting and enforcing obligations under a ‘hard law‘ treaty.

The most specific instruments that deal with disability are ‘soft law’ instruments, such as the World Programme of Action concerning Disabled Persons,46 the Standard Rules on the Equalization of Opportunities for Persons with Disabilities,47 the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care,48 and regional agreements such as the Biwako Millennium Framework For Action Towards An Inclusive, Barrier-Free and Rights-Based Society For Persons with Disabilities in Asia and the Pacific.49

i) Incorporating Disability into Human Rights Treaty Monitoring

The U.N. Human Rights and Disability report found 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 [the major international human rights] instruments.”50 The central challenge for devising a strategy to incorporate the monitoring of the rights of people with disabilities into the work of the human rights treaty bodies is to develop the understanding of the relevance and application of the general treaty rights to the specific circumstances of people with disabilities. One aid in this process is the variety of ‘soft law‘ international disability standards, such as the World Programme of Action and Standard Rules mentioned above.

The link between international disability standards and human rights treaties could be made in two ways: (1) identifying and relying upon the explicit references to disability rights in human rights treaties or (2) interpreting the general provisions of the treaties to apply to the situation and needs of people with disabilities. These options will be reviewed in turn.

ii) Using Disability Rights Provisions

Disability-related articles in the major human rights treaties present an opportunity to use the monitoring mechanisms to assess how governments are complying with and implementing their treaty obligations. Even if the reference to the rights of people with disabilities is brief and undeveloped, such a reference provides a significant opportunity to interpret the disability-related article using more detailed non-binding international disability standards such as the World Programme of Action and the Standard Rules. Unfortunately, direct references to the rights of people with disabilities are the exception and not the rule in human rights treaties. These exceptions include the Convention of the Rights of the Child which mentions the rights of children with disabilities in article 23, as well some of the regional instruments which also include disability, for example, Article 15 of the European Social Charter;51Articles 6(2), 9, and 13(3) of the Protocol of San Salvador (the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights);52 Article 18(4) of the African Charter on Human and Peoples’ Rights;53 and some other binding instruments such as International Labour Organization Convention Number 159 about the vocational rehabilitation and employment of people with disabilities.54

iii) Interpreting General Human Rights Provisions to Apply to People with Disabilities

The second way of linking the rights of people with disabilities to international human rights treaties that have monitoring mechanisms is to refer the general articles of these treaties to the specific situation and needs of the people with disabilities. This idea was a significant focus of the U.N. Human Rights and Disability report in its assessment of the work of the human rights treaty monitoring bodies.55 Human rights treaties tend to offer global standards, applicable to all human beings, or to specific groups of human beings, such as women, children, ethnic or linguistic minorities, etc. These standards encompass, of course, human beings with disabilities, children with disabilities, women with disabilities, people with disabilities belonging to ethnic or linguistic minorities, and so on. Therefore, human rights could apply equally to people with disabilities by interpreting the general articles in a way that responds to the specific contexts of people with disabilities.

This method has been the one most extensively used by different monitoring bodies to assess the specific experience of people with disabilities. Some of the treaty monitoring bodies have directly issued general comments linking the general obligations in a particular treaty to the situation of people with disabilities. General comments are official documents issued by a treaty monitoring body to provide detail on procedures relating to a treaty monitoring body’s work and also to explain the content of specific rights guaranteed under the treaty. An extensive general comment related to disability is General Comment Number 5 of the Committee on Economic, Social and Cultural Rights, which relates the economic, social and cultural rights of the I.C.E.S.C.R. to the context of people with disabilities.56General Recommendation Number 18 of the C.E.D.A.W. Committee discusses the specific government reporting duties regarding the rights of women with disabilities under the women’s rights convention.57

This interpretive strategy of referring the general articles of human rights treaties to the specific situation and needs of people with disabilities may adopt two different, yet complementary, approaches:

• applying the principle of nondiscrimination so that all people enjoy all treaty rights without discrimination on the basis of disability – whenever a restriction or denial of a right occurs on the basis of disability, there is an opportunity to make a case for the violation of the non-discrimination article of every human rights treaty
• identifying the specific rights enumerated in human rights treaties that may apply to the situation and needs of people with disabilities – the goal of this approach is to include in the interpretation of the existing rights an application relevant to people with disabilities.

It is now well accepted that the nondiscrimination articles of human rights treaties prohibit discrimination on the basis of disability. Also, treaty monitoring bodies have indicated that they are receptive to an interpretation of the principle of nondiscrimination that requires more than identical treatment of individuals in similar situations. This interpretation emphasizes that equality of opportunities may require special treatment or accommodation of the particular needs of vulnerable groups to ensure their rights are protected.58 The Committee on Economic, Social and Cultural Rights has, for example, included a failure to make reasonable accommodation (i.e. failure to accommodate difference) in its definition of discrimination on the basis of disability.59 Thus, the nondiscrimination principle can encompass notions of equal citizenship requiring positive action to enable people to participate within the context of their physical and mental characteristics. These notions of citizenship recognize the importance of engaging people in achieving individual quality of life without adverse consequences. The process of ensuring nondiscrimination in practice involves describing the issues and desired outcomes and determining how to reach the outcomes. Environmental adaptation, removal of barriers, and changing institutions and structures to respond to difference are all aspects of eliminating disability discrimination.

Aside from reliance on the nondiscrimination principle, specific treaty rights may be interpreted to apply to the situation and needs of people with disabilities. Practically every human rights treaty – regardless of it being labeled as a “civil and political rights treaty”, an “economic, social and cultural rights treaty”, a “vulnerable group rights treaty” or some combination of these – includes rights that have particular implications for people with disabilities. The vulnerability of people with disabilities, and the barriers and constraints that limit their participation in different spheres of contemporary society, provide a specific context in which to analyze the rights articulated in human rights treaties. The general articles of human rights treaties can be interpreted so that each right is relevant to people with disabilities and takes account of their needs. Non-binding disability rights standards such as the Standard Rules, can be used to inform these interpretations, thereby strengthening the link between binding human rights treaties and non-binding disability standards. General Comment Number 5 of the Committee on Economic, Social and Cultural Rights is an example of such linkage.60

iv) Applying Human Rights Treaties to Disability Rights Issues: Specific Examples

The Committee on Economic, Social and Cultural Rights

The work of the Committee on Economic, Social and Cultural Rights (C.E.S.C.R.) provides a good example of the potential to use existing human rights treaties to recognize the human rights of people with disabilities. Through its General Comments and reporting guidelines, the C.E.S.C.R. has referred to the special vulnerability and needs of people with disabilities, and the particular steps to be taken by governments to respect, protect and fulfill the rights to education; to health; to work; to just and favourable conditions of work; to the formation of and participation in trade unions; to social security; to the protection of the family, mothers and children; to adequate food; to housing; and to cultural participation. The list covers practically all the rights provided by the treaty.

Moreover, the C.E.S.C.R. has insisted, both in its General Comments and in its remarks on State reports, that measures which diminish the realization of a right – “retrogressive measures” – violate the duty of governments to ensure the progressive implementation of the rights of the Covenant.61 There are clear signs in the C.E.S.C.R. jurisprudence that people with disabilities are considered to be among the vulnerable groups in society.62 Therefore, the adoption of retrogressive measures affecting people with disabilities, such as decreasing legal protections or services, is likely to be considered a breach of human rights treaty obligations. The C.E.S.C.R. has also stated that the U.N. World Programme of Action and the Standard Rules are important in applying human rights in the context of disability.

Multiple Discrimination and the “Targeted” Human Rights Treaties

Four of the seven major U.N. human rights treaties focus on the protection of specific vulnerable groups of human beings: women, children, racialized groups, and migrant workers. The intersection of disability, gender, childhood, and race may in many instances aggravate existing vulnerability.63

The Committee on the Elimination of Discrimination against Women acknowledged this potential in General Recommendation Number 18 urging governments to provide information about women with disabilities in their regular State reports on the implementation of C.E.D.A.W.64 The Committee also mentioned women with disabilities in its General Recommendation Number 24 on women and health.65Specific references relevant to the situation and needs of women with disabilities may be made in relation to many of the rights and duties provided by C.E.D.A.W., such as:

• the State duty to take appropriate measures to modify social and cultural patterns in order to eliminate prejudices based in the idea of superiority of either of the sexes
• the duty to eliminate all forms of trafficking in women and exploitation of women
• the right of women to acquire, change or retain their nationality
• the right of women to education on an equal basis with men
• the right to special health protection during pregnancy
• the right to employment protection on an equal basis with men
• the duty to eliminate discrimination against women in all matters relating to marriage and family relations, etc.

The same interpretive strategy may be used for the rights of children under the Convention on the Rights of the Child. While article 23 explicitly refers to children with disabilities, there is potential for the content of the rest of the rights provided by this instrument to be interpreted so as to apply to children with disabilities. Disability raises particular issues when linked to the definition of the best interests of the child; to the right to life, survival and development; to the right to be heard; to the right not to be separated from one’s family; to the right to protection from abuse; to the right to an adequate standard of living; to the right to health care; to the right to education; etc. General Comment Number 1 of the Committee on the Rights of the Child stresses the connection between the right to education and discrimination against children with disabilities.66 Although it does not elaborate further on the point, the reference to the rights of children with disabilities represents a useful precedent that could be relied upon in the future.

The potential for monitoring the rights of people with disabilities through the International Convention on the Elimination of All Forms of Racial Discrimination (C.E.R.D.) is less apparent. The C.E.R.D. Committee has not made any clear connections between the text of the convention and the situation of people with disabilities. However, issues such as the specific impact of racial discrimination on disability, and the aggravation of racial discrimination because of disability, need to be addressed. The Committee has noted the intersection of gender and racial discrimination, though it has not yet developed its work in that regard significantly. Nevertheless, the recognition of multiple discrimination in the context of gender would suggest that a similar approach could be taken in relation to race and disability.

Regional Human Rights Treaties

Given the current trend towards regionalization, regional bodies in Asia, Africa, Europe, and the Americas are very important in human rights standard setting and may be an effective focus for advocacy efforts. The content of main regional human rights treaties (the European Convention for the Protection of Human Rights and Fundamental Freedoms and the European Social Charter, the American Convention on Human Rights, and the African Charter on Human and Peoples’ Rights) overlaps considerably with the international instruments. All of the regional treaties incorporate the principle of non-discrimination, thus both strategies outlined above could be used to advance the rights of people with disabilities in the regional human rights system: applying the principle of nondiscrimination so all people enjoy all treaty rights without discrimination on the basis of disability, as well as identifying the specific rights enumerated in human rights treaties that may apply to the situation and needs of people with disabilities.

There is one regional instrument that deserves special attention, as it is currently the only international treaty entirely dedicated to people with disabilities: the Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities.67 This Convention was approved in Guatemala in 1999, and entered in force in 2001. It is a fairly straightforward instrument, open to ratification by the member states of the Organization of American States (O.A.S.) which monitors government compliance. Disability is defined in the Convention as “a physical, mental or sensory impairment, whether permanent or temporary, that limits the capacity to perform one or more essential activities in daily life, and which can be caused or aggravated by the economic and social environment”.68 Under the terms of the Convention, governments agree to adopt legislation, social, educational or labour related measures to fully integrate persons with disabilities into society. The Convention calls for rehabilitation, education, job training and other measures to promote the independence and quality of life of persons with disabilities.

To monitor compliance with this Convention, a Committee for the Elimination of All Forms of Discrimination against Persons with Disabilities has been established. The Committee is composed of one representative of each State party. Reports are submitted by the Committee to the Secretary General of the O.A.S. every four years. The Committee Reports include information on measures adopted by member states to implement the Convention, and any progress made or difficulties encountered by the States relating to implementation. The Committee Reports are also to include the Committee’s conclusions, observations, and suggestions for the fulfillment of the Convention. There is no individual complaints procedure for this treaty.

The Potential for Monitoring the Five Areas of Focus Through Existing International Human Rights Mechanisms

The research summarized in this chapter was intended to review the opportunities for advocacy at the international level to determine the relevance of the international human rights system in improving the enforcement of the equal enjoyment of all human rights by people with disabilities. While D.R.P.I. intends to focus on the establishment of an international disability rights monitoring system and the collection and dissemination of data, the disability advocacy movement is well placed to choose appropriate advocacy strategies for particular issues and develop strategies that make use of the opportunities at the international level. A wide range of strategies might be effective in making use of international human rights instruments. This report is not intended to offer detailed strategies or recommend particular tactics; however, this section presents brief examples to illustrate how the international human rights system might be used to more effectively monitor disability rights in the five areas of focus, keeping in mind that strategies in one area may inform activities in another or areas may combine and overlap.

Individual Violations Focus

• The individual complaints procedure, described above, could be used to address individual violations of the rights of people with disabilities. While not every case of injustice amounts to a violation of an international human rights obligation, strong cases could be successful in the individual complaints mechanism. Complaints must start within the national legal system of a particular country, but if a favourable result is not achieved, individuals can take their case to a human rights treaty monitoring body that has an individual complaints procedure.
• Systematic submission of individual complaints at the treaty level would result in new jurisprudence and precedents.
• In instances where the State involved is not a party to an U.N. treaty with an individual complaints procedure, other mechanisms may be alternatives: using the regional human rights system, for example, in the Inter-American system where the American Declaration allows for the consideration of individual complaints; or providing information to the thematic special rapporteurs of the Commission on Human Rights.

Systems Focus

• Presenting a treaty monitoring body with information on the history of an individual complaint will demonstrate how the case was handled in the national courts and could expose systemic failures in law, policy, government practices, or implementation of rights by the courts.
• The individual complaint system could be used to challenge national laws that infringe the rights of people with disabilities. In many cases, human rights cases at the international level essentially compare an allegedly discriminatory law with the standards of the relevant human rights treaty.
• Under most human rights treaties, States are required to provide information on the relevant case law developed by the local courts so that the treaty bodies can examine the main trends in national case law. Parallel reports by N.G.O.s could also highlight positive or problematic judicial decisions related to disability rights.
• Where States are taking measures to ensure the equal enjoyment of all human rights for people with disabilities, examples from their periodic reports to treaty monitoring bodies can be used as models of best practices.
• State reporting guidelines for international human rights treaties require governments to describe the principles governing programmes and services, to provide statistical data and to refer to specific practices. Parallel N.G.O. reports could provide information about flaws, failures or inadequacies of programmes and services, and about practices incompatible with human rights. Monitoring at the treaty level may influence policy processes within governments at the national level.

Media Focus

• The international human rights treaty process focuses on the obligations of States to implement treaties they have ratified. Media issues addressed through the treaty system must involve government responsibility. While freedom of expression prevents various types of restrictions on media, some principles relating to discriminatory discourse, expressions of hatred, as well as affirmative action measures to favour non-discriminatory discourse, may advance the goal of modifying negative media representations of people with disabilities.
• Individual complaint mechanisms could be used in cases where the government justifies failing to restrict derogatory discourse, gives preference to discriminatory language or images, or fosters discriminatory discourse. One could also imagine cases in which petitioners file complaints against the State for failing to protect them against derogatory or discriminatory discourse.
• Potentially, the reporting system could assess the effectiveness of measures adopted by governments to eradicate and prevent discrimination through media. Governments could describe affirmative measures adopted to achieve this goal.

Chapter 3: Creating Monitoring Tools for People with Disabilities

Overview

To effectively engage with the international and regional human rights systems, reliable data is needed to document the human rights situations of people with disabilities. The development of systematic measures to monitor respect for human rights is a key aspect of enforcing those rights. This chapter draws on a variety of human rights monitoring tools that are currently in use at national and international levels. The purpose of this examination is to outline the types of information gathered, to provide examples of the tools used, and to identify specific monitoring tools that could serve as a resource for designing disability rights monitoring tools.

Monitoring has been described as a broad term involving the active collection, verification, and immediate use of information to address human rights problems69 Human rights monitoring includes gathering information about incidents, observing events, visiting sites and holding discussions with government authorities to obtain information and to pursue remedies.70 Attention is focused primarily on the reality of people’s lived experiences, rather than simply assessing the protection provided in written laws and assuming its effectiveness.

Many of the monitoring tools reviewed for this report are forms or strategies designed and implemented by non-governmental organizations (N.G.O.s). Despite their excellent work, most human rights N.G.O.s do not specifically monitor the human rights of people with disabilities. This omission underscores the urgent need to build capacity and design resources for disability rights monitoring. Working from the recommendations of the Almåsa Seminar, D.R.P.I. aims to facilitate monitoring in five areas of focus: individual violations of disability rights, legislation and legislative frameworks, case law, government programmes and practices, and media imagery and coverage. It is important to note once again that these are not discrete categories and will overlap in many instances. The areas of focus provide guidance on the scope of monitoring needed and prioritize key areas.

A Survey of Human Rights Monitoring Tools

Direct reference to international human rights law as the primary guide for monitoring work is essential. Monitoring tools are used as an aid and should be developed with reference to relevant treaties and other human rights instruments. Monitoring tools for documenting human rights violations can be divided into two types: those that are designed to assemble information regarding situations or experiences of a particular individual or group (referred to as individual case assessment tools), and those that are designed to assess and compile information on the progress of government compliancewith various human rights treaties (referred to as system assessment tools).

Individual case assessment tools may include various types of questionnaires, complaint forms, and interviews. System assessment tools may include guidelines that spell out the requirements of various human rights treaties and questionnaires designed to measure the steps being taken by governments to live up to their U.N. human rights treaty commitments. Both individual case assessment tools and system assessment tools will be reviewed below.

1) Individual Case Assessment Tools

The individual case assessment tools reviewed for this study include resources which are used to determine whether or not a violation has occurred and/or gather detailed evidence for complaints, as well as interview tools for conducting interviews with people alleging human rights violations. It is important to note that monitoring individual cases assists in identifying trends in violations which might indicate systemic discrimination and suggest the need for solutions that protect the rights of all people with disabilities rather than remedying the individual violation in isolation.

Preliminary Assessment of Human Rights Violations

National human rights institutions, established to investigate and resolve individual complaints of discrimination, have useful models of preliminary assessment tools. National human rights institutions can be an effective link between international human rights law and its implementation in national law and practice.71 These institutions generally have a mandate to monitor the human rights situation, make recommendations for changes in law and policy, and receive complaints which are resolved either with recommendations or mandatory decisions. This work may include enforcing non-discrimination provisions that prohibit discrimination, for example, on the basis of physical and mental disability, in areas such as access to goods, services and facilities, commercial premises, employment and employment related activities.72 The types of monitoring tools used by national human rights institutions could be applied to monitor the rights guaranteed in international human rights law.

The intake questionnaires for the Canadian Human Rights Commission and the South African Human Rights Commission provide examples of the type of information used to make an initial assessment of an alleged human rights violation.73 A questionnaire from the World Organization Against Torture74requests similar information. The information gathered through these individual case assessment tools includes:

• where and when the incident occurred and whether or not the incident is still occurring;
• whether there were any witnesses;
• an explanation of what happened and of the actions considered to be discriminatory (particulars are required such as dates, names of persons, places, etc.);
• why the person believes that she/he has been discriminated against;
• actions taken to deal with the problem such as a complaint to another agency;
• the remedy being sought;
• whether other people have been treated similarly and for the same reason; and
• any documentation related to the case.

Where legislation directly addressing disability discrimination is in place, there may be individual case assessment tools specifically for disability complaints. For example, the Disability Rights Commission (D.R.C.) in the United Kingdom, an independent body established by the government to secure the civil rights of people with disabilities,75 assists individuals with disabilities who believe that they have been discriminated against contrary to the Disability Discrimination Act.76 The D.R.C. has developed two assessment guides to aid people in determining whether they have encountered discrimination prohibited by the Act and whether or not there is a basis for a complaint.77 The guides relate to employment and to goods, facilities, and services. Fairly straightforward, these guides focus specifically on disability-related discrimination and make some preliminary inquiries to determine the need for further investigation. The main issues addressed by the guides are:

• whether the person with a disability was treated less favourably than others;
• whether an employer or service provider failed to make a reasonable adjustment to meet the needs of the person with a disability; and
• whether the employer or service provider had a reasonable justification for the failure to meet the needs of the person with a disability.

These resources – the human rights commission intake questionnaires and the D.R.C. assessment guides – are examples of accessible monitoring tools. They ask fairly straight forward questions and are not detailed or overwhelming forms. While some law-related terminology is used, the questions form a brief outline for individuals to provide a narrative description of the incident and the key details needed for a preliminary assessment.

Interview Tools

In addition to forms completed by people who have experienced human rights abuses, detailed information, gathered by an interviewer, can provide more thorough documentation of violations. The U.N. Training Manual on Human Rights Monitoring78 provides detailed recommendations for conducting interviews to compile data on human rights violations. The central considerations when conducting interviews are the safety of victims and witnesses, sensitivity to cultural differences, confidentiality, effective questioning, and recording and verifying the information. The manual offers concrete steps for the interviewer to adequately address these considerations. Some guidance is offered for interviewing members of “special groups” such as victims of torture, women, refugees, children, rural populations, indigenous communities, and lower-income groups. While some of this advice for special groups may apply to people with disabilities, no specific advice is given for interviewing people with disabilities.

The manual provides an incident report form which focuses on recording personal information, summarizing the facts of the incident and recording details such as places, dates, times, and descriptions of perpetrators.79 The form focuses on a single witness who has either experienced a violation of rights or who has information pertaining to an incident. The form also provides further specific questions relating to arrest and torture. The incident report form and the detailed section on interviewing techniques are excellent resources for in-depth information gathering.

H.U.R.I.D.O.C.S. (Human Rights Information and Documentation Systems, International) has developed widely used tools for documenting of “events” that actually or possibly involve human rights abuses. H.U.R.I.D.O.C.S. focuses on facilitating human rights documentation with the aim of improving access to public information on human rights by improving methods and techniques of monitoring and information handling. To achieve its goals, H.U.R.I..D.O.C.S. offers seminars on human rights monitoring and information handling and develops tools for recording and exchanging information. The two tools for documenting human rights events are the Revised Events Standard Formats and the Micro-thesauri.80The Revised Events Standard Formats standardize terminology and the types of information to be gathered to assist in documenting human rights-related events and in designing databases, and to facilitate the exchange of information among organizations. The formats organize information recorded about victims, sources of information, alleged perpetrators, relationships among persons and groups involved, and interventions. The Micro-thesauri are 48 short lists of terms to be used in specific fields in the standard formats. They provide guidance in using the standard formats by listing H.U.R.I.D.O.C.S. index terms, guidelines for recording the names of persons, violations typology, types of acts, geographical terms, etc.

Summary of Key Findings Regarding the Use of Individual Case Assessment Tools

The review of available individual case assessment tools reveals many common elements to be considered when monitoring human rights:

• Questionnaires and interviews can be useful to collect and compile data for monitoring human rights concerns. These tools should attempt to be thorough while allowing opportunities to record information shared by the witness that goes beyond the answers to specific questions asked by the interviewer. The tools must also be respectful of the individual who is disclosing sensitive information and who is possibly vulnerable to reprisals. Clear protocols and ethical guidelines should be developed to fully address all safety issues relating to the security of people reporting human rights violations and to the security of witnesses.
• Documentation of the facts associated with the human rights infringement should be as precise and detailed as possible and generally include the information listed above in the review of sample monitoring tools.
• Where an interviewer is collecting information, she/he must be adequately trained, well informed, organized, objective, and sensitive to linguistic and cultural differences. The interviewer must also be well informed about the risks and benefits of asking people to tell their stories and about the political and social issues that may be triggered by an investigation.
• For the purposes of reporting and compiling information, consistent and accessible language should be used to enable consistency and comparability.

2) System Assessment Tools – Monitoring Legislative Frameworks, Case Law, and Government Programmes and Practices

Individual human rights violations occur in a social context, a context that can often support the systemic abuse of the rights of people with disabilities. This section reviews system assessment tools – tools that are not designed to record information about individual cases, but to assess and compile information on the larger social context and the progress of government compliance with various human rights treaties. These tools primarily measure the extent to which laws respect international human rights. Given the potential scope and magnitude of assessing legislation, as well as government programmes and practices, devising an assessment tool that is effective and appropriate could be an onerous and complicated task. However, some useful initiatives have been taken, several in the area of women’s rights and also in analysis of legislation, which may serve as a foundation for developing a disability rights tool.

The system assessment tools reviewed for this study include tools designed to assess the implementation of specific treaties and international agreements as well as investigative research methods used by many human rights N.G.O.s.

Assessing the Implementation of Specific International Agreements

The C.E.D.A.W. Commentary and Guidelines, referred to in Chapter 2, is part of a more comprehensive assessment tool: The C.E.D.A.W. Assessment Tool,81 a resource for detailed reporting on compliance with the C.E.D.A.W. treaty. A major goal of this tool is to draw attention to the most critical deficiencies with respect to advancing women’s equality in general and implementing the objectives of the Convention specifically.

The C.E.D.A.W. Assessment Tool is composed of two kinds of assessments: (1) a review of laws to assess the extent of legislated human rights protection and (2) personal interviews with groups and individuals to determine the day-to-day impact and effectiveness of such laws. The review of laws assesses how closely a country’s legislative regime meets the requirements of C.E.D.A.W. The Assessment Guide recommends that this component of the assessment tool be completed by an experienced assessment team in collaboration with locally based legal experts, preferably some with experience in women’s rights. The interview component contains numerous questions directed at women’s real life experiences in a particular country. The questions present a spectrum of issues to be canvassed in interviews with respondents. It is a more complex assessment as it involves conducting a minimum of 30 interviews. The authors suggest interviewing human rights N.G.O.s, women’s rights N.G.O.s, government officials and ministries, trade unions, media representatives, law enforcement officials, judges, prosecutors, law professors, bar association members, social workers, and individuals working at women’s health clinics and reproductive health organizations.82 The assessment tool offers some thoughtful guidance on how to go about ensuring a diversity of interviewees.

The Landmine Monitor Research Guide83 is a resource prepared to assist researchers and editors producing reports on the implementation of the Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and On their Destruction.84 The research guide provides an overview of research standards and methods and then lists questions under three main topics: banning antipersonnel landmines, humanitarian mine action, and landmine victim/survivor assistance. The questions identify implementation benchmarks and outline a series of questions related to each benchmark. In the topic on landmine victim/survivor assistance, a section on “disability policy and practice” includes questions about disability laws, health and medical services, pensions for people with disabilities, and support and services for landmine victims/survivors. The research guide also includes a style guide to assist researchers in presenting the information they have gathered.

There are several system assessment tools that are models for examining written laws at the national level. An assessment of the content of laws can highlight gaps in legal protection and failures to implement international human rights. This legal assessment, in combination with individual assessment tools which attempt to measure the impact of legal protections, can provide significant information on the human rights situation of people with disabilities.

A study analyzing national anti-discrimination laws was undertaken by the European Roma Rights Center, INTERIGHTS, and the Migration Policy Group. In 2002, they published a comparative analysis of national anti-discrimination laws in 15 European Union member states and 11 candidate countries.85 Questions were devised to measure the implementation of the provisions of the European Union Directive implementing the principle of equal treatment between persons irrespective of racial or ethnic origin86and of Protocol No. 12 to the European Convention on Human Rights87 which will broaden the anti-discrimination protection provided in the Convention. After gathering information from individual countries and preparing national reports, the national results were compared to provide an overview of the implementation of each article in the 26 countries.

Another model for evaluating national legislation is a “human rights audit”, a model that emerged from advocacy work to monitor human rights protections associated with HIV/AIDS. The HIV/AIDS human rights audit88 has been devised to assess the legal implementation of the requirements of the International Guidelines on HIV/AIDS and Human Rights.89 The Guidelines set out concrete legislative and other measures that could be taken at the national level to protect human rights in the context of HIV/AIDS. While the HIV/AIDS Guidelines are very specific, and thus more easily implemented than many of the provisions in international human rights treaties and more easily subjected to accountability and measurement tools like a human rights audit, the audit is a useful example of quantifying human rights compliance. The HIV/AIDS audit offers a framework for reviewing national laws. The audit consists of ten indicators, including: public health, criminal laws and transmission offences, anti-discrimination, privacy and confidentiality, sexual offences and the sex industry, prisons, employment, equality of legal status and protection of vulnerable populations, regulation of health professionals and ethical human research, and therapeutic goods. Five questions are specified for each of the ten indicators. These questions focus on the content of various laws to determine the legal protections provided for in reference to the specific recommendations of the Guidelines. The responses are scored to evaluate the level of implementation of the Guidelines.

As noted earlier in this report, Inclusion Europe initiated a documentation project to gather information on the human rights situation of people with intellectual disabilities in Central and Eastern Europe. The primary research tool was based on the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Sources of information included statistical data, publications and legislation, and interviews with government representatives, people with intellectual disabilities, family members of people with intellectual disabilities, and with disability organizations. The research results were compiled into country reports which provide evidence of human rights violations experienced by people with intellectual disabilities in the countries examined and also indicate the progress in implementing the Standard Rules.90

Investigative Research Methods

Many human rights N.G.O.s often do not employ a tool or assessment guide as such. While guided by international human rights law, monitoring may be based more on a form of rigorous investigative journalism and expertise on the particular country or particular human rights issue that is the focus of the investigation. Human Rights Watch and Amnesty International, for example, use these kinds of methods in monitoring of civil and political rights. Mental Disability Rights International uses a similar method, investigating a particular situation primarily through interviews and employing experienced researchers knowledgeable in the issues and skilled in cross-cultural communication. Using this type of method, the resulting reports describe patterns of violations, with individual cases as examples, and recommend changes in law or policy and practice.

Other System Assessment Tools

In addition to the system assessment tools mentioned above such as audits, standard forms, checklists, and investigative interviews, relatively new methods of monitoring economic, social and cultural rights are using statistics and budget analysis to gather information on State compliance with human rights obligations.91 U.N.I.F.E.M.’s Gender Responsive Budget Analysis is an example of how budgets can be analyzed to focus on the rights of a particular vulnerable group.92 This analysis reviews the actual government expenditure and revenue on women and girls as compared to men and boys and specifically links the distribution, use, and generation of public resources to the human rights commitments of the Convention on the Elimination of All Forms of Discrimination Against Women.

Guidelines and checklists highlight relevant issues for development organizations and development programmes.93 The movement supporting a right to development which has placed development issues more squarely in a human rights framework. More attention is now devoted to the need for a rights-based approach throughout international development work. Similarly, with growing attention on the human rights conduct of private enterprise, particularly transnational corporations, human rights checklists have been developed for businesses. 94

Summary of Key Findings Regarding the Use of System Assessment Tools

• The C.E.D.A.W. Assessment Tool highlights the need to assess both written laws and the day-to-day impact and effectiveness of laws to get a more complete picture of the extent of human rights implementation.
• Assessing legal protections using a particular human rights instrument as a benchmark can focus the research and provide the framework for the development of a human rights audit.
• The examples of monitoring tools for analyzing legal protections may also be useful models for assessment of government programmes and practices.
• Some degree of standardization of human rights documentation methods and information handling assists comparative analysis, identification of trends and patterns of abuses, and information sharing.
• Statistics and budget analysis can be used to evaluate compliance with economic, social and cultural rights.

3) Media Monitoring

Research did not reveal monitoring tools such as questionnaires and assessment guidelines that specifically measure positive human rights practices by the media or human rights violations related to the media. However, information on media awareness campaigns and monitoring initiatives that track aspects of media reporting are available. These examples, along with examples of academic research on the media and disability, provide some ideas on media monitoring activities and research that could be useful for identifying positive practices as well as myths and stereotypes perpetuated by media portrayals of persons with disabilities that have an impact on human rights.

Media Awareness Campaigns and Monitoring

MediaWatch is an organization established to monitor medial portrayals of women and to register complaints with appropriate regulatory bodies where such portrayals foster negative myths and stereotypes about women.95 Its work provides some examples of effective media awareness and monitoring strategies. MediaWatch promotes change by educating media industries, government and the public, conducting research, and encouraging consumer advocacy. They have an online complaint form for complaints to media regulatory bodies.96 The form requests information on the type of media image, its source, the time and date that it was seen or heard, and a detailed account of the concerns about the particular media image. MediaWatch has also developed public education resources aimed at fostering a critical approach to media from a feminist perspective.

Among past MediaWatch activities was a “global media monitoring project”.97 Hundreds of individuals and various types of organizations in over 80 countries volunteered to participate in an international day of media monitoring using specially prepared research tools. On a specific day, volunteers from around the world used the research tools to monitor news media (television, radio and newspapers) for the representation and portrayal of women.

Media Research

Media issues have become an academic field of study in many universities and educational institutions. There are many active organizations concerned with media issues – from access, to content, to ownership, and more. However, there has been little research or advocacy in the area of media and disability. A few studies which have focused on disability rights provide examples of the type of media research that could be undertaken to provide data for a human rights assessment. News Coverage on Disability Issues,98 a 1999 study by the Center for an Accessible Society, examined mainstream American media to determine who is providing information about disability to the news media and what kinds of specific topics about disability are covered. The Asian Media Information and Communication Centre has produced an unpublished study on the role of media in addressing disability issues in India, China and Japan.99 Disability organizations interested in media issues, media organizations, and academic researchers in disability studies and media studies could undertake similar studies.

Summary of Media Monitoring Tools

• Several aspects of media coverage can provide information for a human rights assessment, including:
  • tone and content of media images, including the portrayal of people with disabilities
  • the extent of discriminatory or stereotypical images
  • the sources of disability information used by media
• With adequate information about complaint processes, media consumers and grassroots organizations can independently file complaints and could cooperatively monitor media sources for a broader assessment of disability issues in the media and for best practices in positive disability reporting.
• Given the lack of information on media and disability, there are many opportunities for monitoring projects and research studies in this area.

Key Concepts Essential to Effective Monitoring of Human Rights, Including Disability Rights

From this examination of the work of numerous human rights organizations involved in human rights monitoring, several conclusions can be drawn. Based on a sampling of human rights N.G.O.s including Human Rights Watch, Amnesty International, N.G.O. Group for the Convention on the Rights of the Child, The World Organization Against Torture, The European Baptist Federation, The International Helsinki Federation for Human Rights, the Lawyers Committee for Human Rights, Physicians for Human Rights, and the Human Rights Project of Disabled People’s International – Europe and Disability Awareness in Action, the following factors have been identified as important considerations when engaging in human rights monitoring, including disability rights monitoring:

• The effectiveness of monitoring activities depends on credibility, and credibility depends on a meticulous and scrupulously thorough method of collecting facts about an alleged violation.
• Effective monitoring requires a strong and extensive network of trained and committed staff and volunteers.
• Expertise in human rights standards is needed to be able to observe a situation and assess to what extent it amounts to a violation of human rights.
• Forging links with other human rights N.G.O.s and human rights supporters enhances the strength, credibility and productiveness of monitoring activities.
• Effective reporting based on human rights monitoring usually mixes illustrative, individual cases with a synthesis of the patterns of violations, followed by succinct recommendations about how government should change their law, policy, and practices.
• Well-organized publicity campaigns are needed to give profile and visibility to the monitoring activities, to expose the harmful effects of human rights violations and to secure public support for their eradication.
• Some ongoing co-ordination and support (perhaps in the form of staff) may be needed to oversee the day-to-day operations of monitoring.
• Mounting fact-finding missions, conducting detailed research, and launching publicity campaigns requires some financial resources. The more widespread and in-depth the work, the greater the need for financial resources.
• Communication techniques must be timely, efficient and precise.
• Effective monitoring requires well-designed data collecting tools.
• Monitors must be objective and impartial in their investigations. Some organizations argue that the only way to preserve independence and integrity is to refuse to accept government funding for monitoring activities.
• Cultivating media interest is an important component in exposing human rights violations.
• The knowledge and experience of local/grassroots groups can be a valuable resource in determining effective strategies and solutions.
• Educational resources such as websites, speakers, brochures and pamphlets, activity reports, audio visual productions, and regular communication organs can help to inform those who have experienced human rights abuses and their abusers about monitoring activities.
• Investigations and fact-finding missions must be conducted carefully to protect the security of both the witness and the human rights monitor.
• Comprehensive training is needed to provide staff and volunteers with the knowledge, skills and expertise required to carry out data collection, investigations, disclosures of abuse, resolution of abuse, etc.

Chapter 4: Disability Rights Training Resources

Overview

Various training materials and courses will be required for the creation of an international disability rights monitoring programme in order to effectively gather data and provide information about international human rights mechanisms. This chapter of the report assesses the available human rights training resources which could be used or adapted to build capacity for disability rights monitoring and for engagement with human rights mechanisms. What is referred to as ‘human rights training’ or ‘human rights education’ is inevitably a learning experience for everyone involved – the participants and those facilitating the training session. Participants with an interest in attending sessions on disability rights and international human rights mechanisms will have knowledge and experience to share. The training course examples described below suggest knowledge that would be useful for human rights monitoring and the courses are envisioned as collaborative sessions, both drawing on and developing the expertise of participants and facilitators.

While every effort was made to conduct a thorough investigation into human rights training resources, we did not intend to undertake a complete inventory. Disability-related training resources were prioritized and researched in detail. Then, significant examples of more general human rights training resources were reviewed to provide a picture of available print resources, Internet resources and training courses aimed at various audiences: audiences of different ages and knowledge levels, and audiences with expertise in human rights advocacy, law, government, journalism, or community work.

The training resources that were analyzed were organized according to the content and purpose of each resource and its intended audience. Felisa Tibbitts, director of Human Rights Education Associates, has suggested three general models for human rights education: a values and awareness model, an accountability model, and a transformational model.100 These models provide considerations for assessing how various forms of human rights education contribute to social transformation. The models were helpful in determining which resources would be useful in facilitating human rights monitoring.

The values and awareness model refers to human rights education that is designed to convey basic human rights knowledge to raise awareness and change public values. Public awareness campaigns, school curricula, and introductory human rights information sessions for various audiences are examples of values and awareness models. The goal is to increase understanding of human rights and enable people to apply a critical human rights framework, but there is little emphasis on skills development.

The accountability model encompasses human rights education for people already directly or indirectly associated with guaranteeing human rights through their profession. The education focuses on highlighting the human rights dimensions of their work: the ways in which professional responsibilities involve either directly monitoring human rights violations and advocating with the necessary authorities or taking special care to protect the rights of people (especially vulnerable populations) for whom they have some responsibility.101 Thus, human rights education in the accountability model would include training for human rights monitors, for judges and police, as well as for social justice advocates and community workers who have both direct and indirect involvement with human rights. Training is focused on specialized areas and emphasizes skills development.

In the transformational model, education is focused on empowering individuals to both recognize human rights abuses and to take action to prevent them. This type of education may be complemented with leadership development, conflict resolution training, vocational training, employment, and informal networks. Participants are assumed to have personal experiences of discrimination and unequal treatment that can be seen as human rights violations. Examples of this model include education activities in refugee camps, in post-conflict societies, with victims of domestic abuse, with groups serving the poor, and in advocacy organizations.

Various disability organizations and N.G.O.s are engaged in disability rights training. Most of this activity would be categorized as either values and awareness education or transformational. This training is particularly useful for awareness raising for political action.

The research for this report focused on accountability models. This focus aided the identification of resources and models useful for developing skills and expertise related to monitoring in the five areas of focus. The results confirmed a clear need for disability-specific human rights training resources and for training sessions for disability rights monitors.

With an awareness of the need for further disability rights training resources, this section will outline suggested training courses, refer to materials and courses on more general human rights topics, and indicate how those resources might be used or adapted. The section concludes with key concepts relating to the format and implementation of training sessions, including reference to “train the trainer” models where individuals who participate in training are encouraged to conduct training in their home communities.

Disability Rights Training and the Five Areas of Focus for Monitoring

As noted in earlier sections of this report, D.R.P.I. is organized around the five areas of focus identified at the Almåsa Seminar: individual violations of disability rights, legislation and legislative frameworks, case law, government programmes and practices, and media imagery and coverage.

Since the five areas of focus are not distinct categories and will overlap in many ways, training programmes for monitors could have substantial common elements regardless of the emphasis of monitoring activities. Given the broad scope of the areas identified for monitoring, training efforts could start with individuals, including people with disabilities themselves, who are recruited to monitor violations of the equal effective enjoyment of human rights by people with disabilities. Training could then be expanded to encompass individuals not active in monitoring, again prioritizing training for people with disabilities, as well as for human rights advocates, social workers and community workers, and key players in the development of legislation and government policy, enforcement of laws, provision of government services, and in media communications.

Three Training Models

Keeping in mind the current need for disability rights training resources, the research into training resources, many of which will be referred to below, suggests three general training models: an introduction to human rights and disability rights, training on disability rights and where the rights of people with disabilities are situated within the context of the international and regional human rights systems, and training for in-the-field disability rights monitors.

It is essential that people with disabilities are involved in leading training sessions in all of the suggested training programmes. As well, a factual basis for the types of violations experienced by people with disabilities is an important component of any disability rights training session. Where human rights reports cover disability rights issues, they are useful resources for presenting examples. The reports of Mental Disability Rights International102 and a report by Amnesty International on mental disability rights in Bulgaria103 could be used as training resources. As well, the annual report produced by the Disability Awareness in Action Human Rights Project provides statistical information on the disability rights cases on the DAA database and would be a practical resource.104

Each suggested training model should also address dual discrimination, for example, human rights concerns specific to the ways in which disability intersects with sex, age, and racial discrimination.

1) An Introduction to Human Rights and Disability Rights

This model would provide an introductory understanding and awareness of the human rights of people with disabilities for those unfamiliar with a rights framework, especially the application of a rights framework to disability issues. It is important to situate the equal effective enjoyment of all human rights by people with disabilities within the existing human rights context. The rights of people with disabilities are not distinct from the workings of the general international human rights system or an ‘add-on’ to this system, but an integral part of ensuring the full enjoyment of human rights by all. This type of introductory course could also provide basic information about the need to report violations, the purpose of reporting human rights violations, and how to do so.

The introductory training model could cover:

• the Universal Declaration of Human Rights, its history and its articles, along with discussion of the principles of universality, indivisibility and non-discrimination
• overview of relevant binding human rights treaties
• factual examples of human rights issues facing people with disabilities and discussion of how and why people with disabilities are subject to human rights violations
• introduction to the Standard Rules for the Equalization of Opportunities for Persons with Disabilities
• discussion of government responsibility for human rights standards
• basic information on reporting human rights violations

While the disability-related content would require further development, there are a few useful examples of introductory human rights training resources that could potentially be expanded or adapted for such a course.

• Inclusion International has produced a plain language slide series and computer slide series that are used by the organization as a disability rights education tool.105 The slide presentations introduce the concept of the human rights of people with disabilities, define discrimination and exclusion, explain the role of the United Nations and the recent UN Commission on Human Rights resolutions on disability rights, and suggest actions for governments, individuals, families and communities.
• Human Rights Explained is an online public resource produced by the government of Australia that provides information for a general audience on topics such as ‘human rights and you’, ‘what are human rights?’ and ‘the global view of human rights’ as well as references for further reading.106
• For an example of a manual designed for a ‘grassroots’ audience, see Claiming Our Rights, a flexible, culturally relevant women’s human rights education model produced by the Sisterhood is Global Institute.107
• The report titled Training of Trainers in the Monitoring and Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities108 could provide ideas for developing a training resource on the Standard Rules. This report describes and evaluates a three and one half day training programme which included lecture-conferences, group work and planning sessions, as well as study tours.

A version of this introductory disability rights training model would likely be the most appropriate training model for journalists. A media training course could focus on the elements listed above, with locally and nationally relevant examples, and include the possibility that participants write disability rights focused articles for the course. The Training Manual for Media and Disability Rights published by Disability Awareness in Action is a manual for a three-day media training seminar.109 The manual provides guidance on conducting the seminar as well as step-by-step details on the seminar’s content, including clear goals for each session and suggested training methods.

Other resources for training journalists are available through the National Center on Disability and Journalism110 in the United States. The Center works to educate journalists and educators about disability reporting issues. Resources produced by the Center include tips for interviewing people with disabilities, educational exercises to raise awareness about disability issues in news reporting, a style guide of disability terms, and disability curricula for use in college and university classrooms as well as with journalist education organizations.

2) Disability Rights and the International and Regional Human Rights Systems

Assuming a basic understanding of the issues suggested as topics for the first training model, a more advanced training course would provide detail on the international and regional human rights systems. This knowledge would provide the global human rights context: international human rights law and the reporting and complaints mechanisms available for enforcing the equal effective enjoyment of all human rights by people with disabilities. An understanding of the international human rights system and of how monitoring data could be used will assist disability rights monitors in data collection. This training model would also be particularly useful for disability rights advocates, other human rights advocates, lawyers, judges, and government officials. Many options exist for structuring the training sessions; for example, all participants could be engaged long-term by covering the suggested topics progressively through several training sessions rather than introducing all the material in one or two longer training sessions.

This training model would review (in more or less detail, depending upon the audience):

• information on the United Nations human rights related bodies (treaty monitoring bodies, Commission on Human Rights and its thematic mechanisms, Economic and Social Council, etc.)
• State reporting procedures under various relevant treaties and parallel reports from N.G.O.s
• Concluding Observations from treaty monitoring bodies and other statements such as General Comments and guidelines
• regional human rights bodies and their relationship to the United Nations
• relevant regional human rights treaties, treaty bodies, and complaint mechanisms
• the increasing obligations of non-State actors (e.g. corporations)
• the types of violations that can be reported
• national information, where relevant, about ombudsmen, national complaint mechanisms, where to obtain assistance with a complaint, and complaints procedure
• an understanding of why it is important that complaints be filed and pursued

Several useful references for this human rights law training were identified:

• What is Monitoring is a manual produced by Human Rights Information and Documentation Systems International (H.U.R.I.D.O.C.S.).111 The initial sections of the manual introduce the concept of human rights monitoring, international human rights instruments, and monitoring by the U.N. and other intergovernmental organizations.
• Minority Rights Group International has produced a manual for the U.N. human rights system that focuses the reader on aspects of the system which are particularly relevant for a specific group, in this case, minorities. The manual provides an overview of the applicable international standards, relevant General Comments, monitoring procedures, State reporting, complaint mechanisms, and other U.N. resources, including the relevant commissions and sub-commissions.112
• Women’s Human Rights Step by Step is a guide designed to encourage women’s organizations to use human rights law in their work. It is a good example of an introduction to a human rights framework and early chapters review the international and regional human rights systems. The book also covers national human rights systems, human rights advocacy efforts, documenting human rights violations, and presents a step-by-step guide for designing an advocacy strategy.113Much of the information is useful beyond women’s rights advocacy and the guide is a well designed model.
• The Torture Reporting Handbook provides guidance in reporting and submitting complaints to international bodies and mechanisms.114 The handbook has a chapter on what you can hope to achieve by reporting human rights violations (in this instance torture, but the content of the chapter can be applied more generally). It also has general information about preparing and submitting a communication to an international body and basic facts about many of the treaty monitoring bodies.
• The Landmines Survivors Network coordinates human rights education and leadership training hosted by the International Campaign to Ban Landmines. This programme, called ‘Raising the Voices’, focuses on disability rights advocacy skills for participation at the annual meetings of State parties to the Convention on the Prohibition of the use, stockpiling, production and transfer of antipersonnel mines and on their destruction.115 The training sessions review the international standards related to disability, the international treaty process, and advocacy skills.

3) Adapting Disability Rights and Human Rights Systems Training for Specific Audiences

Depending on the particular audience, specific components could be added to training sessions on the regional and international human rights systems. Additional course topics are listed below for NGOs and activists; law students, lawyers and judges and legal decision-makers; government members and officials; and professionals such as police officers and social workers. Useful training resources are also listed.

Non-Governmental Organizations, Activists and Civil Society Groups

In addition to the course topics for the international and regional human rights training mentioned above, further information could be provided on:

• how international human rights standards are relevant to their current, ongoing work and how a human rights framework might increase the impact of their activities
• networking and collaboration

The manuals referred to as general resources for this training model, could be supplemented with specific resources for NGOs. Ripple in Still Water: Reflections by Activists on Local- and National-Level Work on Economic, Social and Cultural Rights116 is a digest of information and experiences particularly relevant and useful to local- and national-level economic, social and cultural rights activism. Ripple in Still Water developed from a 1996 workshop held by the International Human Rights Internship Program (I.H.R.I.P.). The document has several relevant sections including a discussion of applying a human rights approach to economic, social and cultural rights and strategies and tools for activism including working with intergovernmental bodies, and national policy work, legislative advocacy and litigation.

Another resource published by the I.H.R.I.P. along with the Asian Forum for Human Rights and Development (Forum Asia) is Circle of Rights – Economic, Social and Cultural Rights Activism: A Training Resource.117 This resource is 660 pages in length with 30 modules of information about the substance of economic, social and cultural rights and about strategies and tools to protect and promote those rights. The topics include a history and overview of economic, social and cultural rights, and understanding specific rights. Training methodologies for effectively conveying information on economic, social and cultural rights are suggested. Contributors to Circle of Rights include a large number of activists from around the world.

Various programmes are available for training on international human rights law and the international human rights system. The Canadian Human Rights Foundation118 offers human rights training courses in various regions and an annual course in Montréal, the International Human Rights Training Program (I.H.R.T.P.). The I.H.R.T.P. is a three-week training session for participants from around the world. Participants are human rights workers looking to increase their understanding of human rights and of the essential role of human rights education in effecting change. The Canadian Human Rights Foundation also has partners in Central and Eastern Europe, Asia, and Africa and has offered human rights education training in those regions, including human rights advocacy and monitoring courses.

Forum Asia119 and I.N.T.E.R.I.G.H.T.S.120 have developed a training programme for activists in the South Asian region on the use of international human rights law. The training focuses on the use of international human rights mechanisms and the application of international human rights law at the national level. Human rights advocates are then supported in preparing and disseminating parallel reports to the U.N. treaty monitoring bodies, in using extra-conventional mechanisms such as Special Rapporteurs, and in using international and comparative law before national courts.

The International Service for Human Rights (I.S.H.R.) is specialized in monitoring United Nations meetings concerning human rights.121 They conduct an annual training course at the United Nations in Geneva, which coincides with the sessions of the U.N. Commission on Human Rights. I.S.H.R. also holds other regional training sessions in cooperation with partner organizations. The training is to enable human rights activists to make effective use of the U.N. and other international human rights procedures. The focus is on the procedures of the Commission on Human Rights and the U.N. treaty bodies and addresses theoretical aspects of international human rights and international humanitarian law.

Law Students, Lawyers and Judges and Decision-Makers

In addition to the course topics for the international and regional human rights training mentioned above, training for legal professions could provide further information on:

• the historical development of the law relating to human rights and the structure, major institutions, and jurisprudence of the international and regional human rights systems
• how to construct and advocate effective legal and policy arguments using international human rights law
• the constitutional protection and national human rights laws in the participants’ countries

A human rights training resource specifically for legal professionals has recently been published by the Office of the High Commissioner for Human Rights. Human Rights in the Administration of Justice, part of the O.H.C.H.R.’s Professional Training Series, is a manual for judges, prosecutors and lawyers.122 A facilitator’s guide for training workshops using the new manual is also being developed. The manual is extensive and provides introductory information on international human rights law and the role of the legal profession, as well as information on applying human rights law in specific situations such as arrest, pre-trial and detention, trials, and states of emergency. Chapters also cover the rights of the child, women’s rights, fundamental freedoms, nondiscrimination and equality, redress for victims of crime, and economic, social and cultural rights. This is useful information for those making legal decisions in the area of human rights, not only judges, but also decision-makers within national human rights institutions.

Another useful resource for human rights training for legal professionals is the Model Human Rights Curriculum for Commonwealth Law Schools123 produced by the Commonwealth Legal Education Association. The model curriculum covers basic concepts of human rights, international protection of human rights, regional protection of human rights, the Commonwealth and the protection of human rights, domestic protection of human rights in the Commonwealth, human rights and small States in the Commonwealth, and specific rights. Disability rights are not included, but could be added to the curriculum under the ‘specific rights’ heading.

There is also a specific resource discussing the law and mental disability rights. An issue of the New York Law School Journal of International and Comparative Law presents proceedings and papers from a symposium dedicated to exploring issues in monitoring mental disability rights.124

Government Members and Officials

In addition to the course topics for the international and regional human rights training mentioned above, further information could be provided on:

• government accountability and responsibility
• the meaning and use of the Standard Rules

Amnesty International produced a 12 Point Guide for Good Practice in the Training and Education for Human Rights of Government Officials.125 The eight-page guide provides an outline of the fundamental elements of training for government officials and emphasizes the need for government human rights training to be part of an overall human rights strategy and to involve N.G.O.s at every stage.

The report on the Training of Trainers in Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities126, mentioned above, is a starting point for training on the Standard Rules.

Professionals

In addition to the course topics for the international and regional human rights training mentioned above, further information could be provided on:

• material relevant to their specific profession and daily work

Useful human rights training resources specific to certain professional groups have been produced by the United Nations:

• Human Rights and Social Work127 is a manual for professionals, which starts with an overview of the historical development of human rights and an introduction to the basic human rights instruments and the international human rights system. The manual then provides “issues for practice reality” including discussion of particular themes, dilemmas facing social workers, teaching considerations, and eight case vignettes. Disability is among the many issues addressed.
• Human Rights and Law Enforcement is a similar, but more detailed, manual for police and other law enforcement officials.128 The manual provides more information on conducting training sessions and then reviews fundamental human rights concepts and institutions. The bulk of the manual examines police duties and functions in a human rights framework, including reference to groups requiring special protection, although people with disabilities are not included in those topics. The annexes include a model outline for a human rights course for police, a pre-course questionnaire, a post-course examination and a post-course evaluation.

4) Training Programmes for Monitors

To effectively monitor the human rights situation of people with disabilities, monitors need to be knowledgeable in three areas: disability rights, human rights law, and methods of evidence collection and verification. They need excellent interviewing and communication skills and to be sensitized to the ethical issues involved in monitoring human rights violations. In order to conduct effective monitoring, monitors must understand the underlying disability rights issues to know what to look for and know what kinds of issues need to be identified. This third and most specific training model builds on the training models described above and adds elements that focus on specific skills for monitoring of disability rights.

In researching training for human rights monitors, D.R.P.I. contacted several human rights monitoring and training organizations to inquire about the types of resources used. We determined that most human rights monitoring organizations do not have standard training sessions or materials, but provide training that is specific to each monitoring mission and in many cases employ individuals who already have necessary skills, such as experience in cross-cultural communication.129

Generally, training for human rights monitors includes:

• project and organizational background including relevant policies and guidelines and a review of the project objectives
• information on fact-finding, data collection, and report writing
• interviewing skills
• knowledge of confidentiality and ethical considerations
• methods of addressing fieldwork stress and emotional responses
• discussion of specific human rights violations
• review of relevant human rights law
• use of specific monitoring tools

Several effective training resources have been developed for training human rights monitors:

• The United Nations has produced a Tr aining Manual on Human Rights Monitoring.130 This is an extensive manual almost 500 pages in length. Numerous topics are reviewed in detail. After a review of the framework of the international human rights system and international human rights standards, Part Three introduces the basic principles of monitoring and then outlines monitoring procedures in detail including information gathering, interviewing, and monitoring specific human rights or in specific settings (detentions centres, refugee camps, legal trials, etc.). Part Four of the manual focuses on human rights reporting. The equal effective enjoyment of human rights by people with disabilities is not sufficiently covered in this manual, but the general information on the monitoring function and procedures can be applied or adapted to disability rights.
• Human Rights Education Associates recently offered a distance learning course on human rights monitoring using the U.N. Training Manual on Human Rights Monitoring.131 The course involved 60 hours of reading, online working groups, interaction with students and instructors/facilitators and assignments, and was offered over a three-month period. The course aimed to provide participants with practical guidance on how to monitor human rights.
• H.U.R.I.D.O.C.’s What is Monitoring manual provides a basic introduction to human rights monitoring, international standards, and monitoring organizations, as well as information on how to monitor: collecting data, monitoring various situations and particular cases, and analyzing data.132
• The Handbook on Fact-Finding and Documentation of Human Rights Violations discusses the basics of investigation and systematic recording of information on human rights violations.133

An in-person training course or distance education model could be developed using these resources with an added disability rights component to review relevant human rights law provisions, provide discussion of specific violations, and other specialized information.

Key Concepts for Disability Rights Training

The Human Rights Education Handbook: Effective Practices for Learning Action and Change provides an overview of key considerations in the design of human rights education programmes.134 It includes an introduction to human rights education and practical information on facilitation, the components of human rights education, methodologies, advice for planning presentations and evaluating programmes, and lists of resources including lists of methods, techniques, and activities. See also Human Rights Training: A Manual on Human Rights Training Methodology by the U.N. Office of the High Commissioner for Human Rights.135

From the review of current training materials, the following considerations are important to the development of disability rights training resources:

• Adequate consideration should be given to tailoring information for specific audiences, including providing for the accessibility needs of trainers and participants.
• Factual information from human rights reports can provide concrete examples of violations of the equal enjoyment of human rights by people with disabilities and may be especially useful in discussing the kinds of issues to be identified by monitors.
• An introductory training model on disability rights and on international human rights law can be adapted for particular audiences, including N.G.O.s and activists, law students, lawyers, judges, government members and officials, and various professionals such as police officers social workers, and journalists.
• Trainers should plan for ongoing assessment of the effectiveness of training sessions and adapt as needed, responding to expertise of the participants, their diversity and cultural backgrounds, and experimenting with various training formats.
• “Train the Trainer” models, where individuals who receive training are encouraged to conduct training in their home communities, can have a wide impact.
• The effectiveness of individuals who are working as disability rights monitors can be enhanced by ensuring they have a thorough understanding of disability rights and the international human rights system, particularly the individual complaints procedures.

Chapter 5: Conclusion

The challenges in establishing an international monitoring system for disability rights are many. Current monitoring practices and human rights mechanisms do not adequately monitor or enforce disability rights. The minimal awareness of disability rights outside the disability community requires creative strategies to communicate ideas that are new to many people and are not currently universally accepted. The capacity building tasks will be daunting: promoting broader awareness of disability rights, developing training materials and monitoring tools appropriate for diverse cultures and regions, supporting credible and accurate monitoring procedures that ensure a safe environment for people with disabilities to speak out, communicating collected data so it can be used constructively, and encouraging engagement with the international and regional human rights systems.

Yet, while the challenges are many, so are the possibilities.

Along with the recent growing international recognition of the need for equal enjoyment of all human rights by people with disabilities, especially at the United Nations level, N.G.O.s are increasingly incorporating disability rights into their advocacy agendas. There are increasing opportunities to bring together the human rights movement and the disability movement. Increased awareness of disability rights as human rights is essential to acknowledge the disability rights violations that are occurring and to add to the effectiveness of work to eliminate disability discrimination. New partnerships and cross-cultural interaction provide opportunities for sharing knowledge and expertise, identifying common problems, and developing creative solutions.

The research results summarized in this report show the wealth of expertise that exists in organizations that have undertaken disability rights monitoring and in organizations with years of experience monitoring human rights in other areas. Examples include the disability rights monitoring of the Human Rights Project of Disabled Peoples International and Disability Awareness in Action, the projects of Inclusion Europe and Mental Disability Rights International, and the global monitoring of Amnesty International and Human Rights Watch.

People with experience in this field have ideas and advice about methodology that can be applied to the D.R.P.I. project. An assortment of useful materials and precedents are available as models for disability rights training and monitoring. This valuable experience illuminates the many possibilities for action and confirms that reliable tools and processes can be created to collect disability rights data in the five areas of focus. Such concrete guidance must be considered as D.R.P.I. moves forward.

The Human Rights and Disability report of the United Nations Office of the High Commissioner for Human Rights emphasized that international human rights treaties and monitoring mechanisms could be more effectively used to enforce the equal effective enjoyment of all human rights by people with disabilities. The Phase I research results confirm that there are concrete opportunities for advancing disability rights using international human rights monitoring mechanisms. The research demonstrates the feasibility of mainstreaming disability rights into the existing international human rights system. Credible data on disability rights violations, together with effective interpretations of international human rights law, offer great potential for using the human rights treaty monitoring bodies to encourage government compliance with their human rights obligations.

The Phase 1 research not only highlights opportunities, but also offers instructive examples of how to move forward in establishing a sustainable disability rights monitoring system. The beneficiaries of disability rights monitoring projects must be the priority in this project and their security and integrity cannot be compromised by moving quickly or without consultation, or by taking ineffective or unproductive action. It is clear from the history of human rights monitoring in other areas of discrimination that the establishment of a global monitoring system or network must involve extensive planning. The development of monitoring tools and the training of disability rights monitors in various regions around the world will take considerable time. However, the time invested in supporting groups and individuals who can share skills with others, as well as the investment in establishing enduring infrastructure, will reap rewards in the long-term.

Building on the momentum generated by the accomplishments of the disability movement, D.R.P.I. has chosen to focus on a human rights approach and to facilitate the technical task of collecting data on the human rights situation of people with disabilities. While this project focuses on human rights monitoring, diverse actions and multifaceted plans are needed to eliminate disability discrimination. Many elements are involved in achieving the type of social transformation necessary to realize the equality of people with disabilities. It is anticipated that D.R.P.I.’s work will contribute to and complement the ongoing efforts of disability rights advocates, as well as generate new ideas and opportunities for advancing the equal enjoyment of all human rights by people with disabilities.

Appendices

Appendix A: D.R.P.I. Advisory Committee

• Andrew Byrnes, Professor, Australian National University, Australia
• Christian Courtis, Professor, University of Buenos Aires, Argentina
• Theresia Degener, Professor, University of Applied Sciences, Germany
• Steven Estey, Chair, International Committee, Council of Canadians with Disabilities, Canada
• Nicholas Howen, Regional Representative for Asia-Pacific, United Nations High Commissioner for Human Rights, Thailand
• Judith Heumann, Advisor on Disability and Development, The World Bank, United States
• Rodrigo Jiménez, Rights of Peoples with Disabilities, Costa Rica
• Lars Lööw, Disability Ombudsman, Office of the Disability Ombudsman, Sweden
• Leanne MacMillan, Executive Director, I.N.T.E.R.I.G.H.T.S., United Kingdom
• Anuradha Mohit, Special Rapporteur, National Human Rights Commission, India
• Gerard Quinn, Professor, National University of Ireland, Galway, Ireland
• William Rowland, Second Vice President, World Blind Union, and Executive Director, South African National Council for the Blind, South Africa
• Eric Rosenthal, Executive Director, Mental Disability Rights International, United States
• Ann-Marit Sæbønes, Politician and Disability Activist, Norway

Appendix B: Phase 1 Project Team

Below are brief biographies of each of the members of the team working on Phase 1 of Disability Rights Promotion International:

• BENGT LINDQVIST: Bengt Lindqvist was Principal Investigator for D.R.P.I. Phase 1 and is Co-Director of the D.R.P.I. project. He was the U.N. Special Rapporteur on Disability from 1994 until January 2003, and was also a Member of Parliament in Sweden, serving as Minister for Social Services and Family Affairs. He has received honorary doctorates in social science (Stockholm University, 1999) and community medicine (Lund University, 2002). By profession, Bengt Lindqvist is a language teacher. He has extensive experience in the movement of people with disabilities, both in Sweden and internationally.
• MARCIA RIOUX: Marcia Rioux was Principal Investigator for D.R.P.I. Phase 1 and is Co-Director of the D.R.P.I. project. She is the Graduate Director of the Master of Arts (Critical Disability Studies) at York University in Toronto, Canada and is also Professor and Chair of the School of Health Policy at York University. She was President of the Roeher Institute for 12 years before joining the university. She works with many disability organizations and has published and consulted widely on disability and human rights and disability policy issues, both nationally and internationally. She received her PhD from the law school at the University of California, Berkeley.
• FIONA SAMPSON: Fiona Sampson was the phase 1 Project Coordinator. Fiona teaches equality rights law at Osgoode Hall Law School in Toronto, where she is also a candidate in the Doctorate of Jurisprudence programme. Fiona’s Doctoral thesis is an analysis of the Supreme Court of Canada’s treatment of gendered disability. Fiona is a human rights lawyer with expertise in the litigation of sex and disability related discrimination complaints, and she is active within the disability-equality rights community in Canada where she is a member of the Equality Rights Committee of D.A.W.N. (DisAbled Women’s Network) Canada.
• ANNE CARBERT:Anne Carbert is working for the project in the position of Research Associate. She has varied research and work experience in the equality rights field. As a Human Rights Fellow at the University of Toronto Faculty of Law, Anne co-authored a manual on reproductive rights advocacy in the African regional human rights system. She also participated in a women’s rights internship in Nairobi, Kenya. Anne is a lawyer and recently worked as a human rights caseworker on discrimination issues related to poverty and housing.
• ANNIKA ÅKERBERG: Annika Åkerberg authored a background paper on human rights training models. She is a lawyer in Farsta, Sweden, where she works as a human rights consultant specializing in disability-related issues. Most recently, Annika worked as a consultant for the Swedish Organisations of Disabled Persons International Aid Association, the Swedish Disability Federation, the international Almåsa seminar on human rights and disability in Stockholm, Sweden, and the Swedish Organization of Visually Impaired Youth. In 2001, she did an internship at the office of the High Commissioner for Human Rights where she worked for the Committee of the Rights of the Child.
• CHRISTIAN COURTIS: Christian Courtis authored a background paper on international human rights mechanisms: Monitoring Disability Rights through the International Human Rights Framework. Christian lives in Buenos Aires, Argentina, where he is a clerk with the Buenos Aires Supreme Court. He is a Law Professor at the University of Buenos Aires Law School, where he teaches and researches about human rights, social policy and equality issues. Prior to working for the Supreme Court, Christian was the Director of the Legal Aid Program for People with Mental Disabilities at C.E.L.S., a well-known human rights N.G.O. located in Buenos Aires. He served several times as expert for the United Nations Division for Social Policy and Development regarding human rights and disability issues.
• YVONNE PETERS: Yvonne Peters authored a background paper on monitoring tools, Creating International Tools for Monitoring the Human Rights of People with Disabilities. Yvonne lives in Winnipeg, Canada where she is a human rights lawyer with a special interest in disability rights and women’s rights. She provides legal advice on equality issues to Canadian labour unions, community groups, governments and the private sector. She is an active member of both the women’s movement and the disability rights movement and she serves on the Equality Rights Committee of D.A.W.N. (DisAbled Women’s Network) Canada.
• RICHARD LIGHT: Richard Light authored a paper for D.R.P.I. describing the Disability Awareness in Action (D.A.A.) Human Rights Project, which is based in London, England. At the time the paper was written, Richard was Research and Publications Director at D.A.A. and editor of the Disability Tribune. In November 2002, he was appointed the Director of D.A.A.R.T. Disability and Human Rights Centre in London.