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:
- an inventory and analysis of international human rights mechanisms with potential to monitor disability rights;
- an inventory and analysis of tools currently used for international human rights monitoring; and
- 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.