Chapter 1: Background to Disability Rights Promotion International Project
Disability Rights Promotion International (D.R.P.I.) is a collaborative project working to establish a comprehensive and sustainable system for monitoring the human rights of people with disabilities. D.R.P.I. is developing tools and methods to facilitate the gathering and analysis of reliable data on the human rights situation of people with disabilities. Monitoring data provides needed facts about disability discrimination that will bring about positive changes in the lives of individuals with disabilities. These facts will support disability advocates in communicating disability rights issues and provide a basis on which governments can ensure that policy, programs, law, and legislation meet basic standards of human rights.
Five general principles govern the D.R.P.I. project during each of its phases:
- Involvement of people with disabilities and organizations of people with disabilities in the D.R.P.I. project itself and in all disability rights monitoring activities. D.R.P.I. recognizes that disability rights monitoring belongs to people with disabilities.
- Emphasis placed on working with people with disabilities and disability organizations to build capacity to use the tools developed in the project to conduct disability rights monitoring, analyze the data collected and use the data to advocate for positive change. All monitoring tools and training resources developed by the project will be accessible, easy to use and freely available to all.
- Recognition of the need for cross-disability involvement in monitoring activities, that is, people with a spectrum of disabilities both participate in monitoring and have their personal experiences monitored.
- Use of a holistic approach to monitoring in order to fully understand the human rights situation of people with disabilities, that is, analyzing data from all three focus areas (systems, individual experiences and media) to provide a comprehensive picture.
- Engagement of individuals and organizations already involved in human rights monitoring as partners in the development of methodology and as a means of benefiting from past experience and ensuring the sustainability of disability rights monitoring efforts after the life of this project.
The Need for Action: Growing International Recognition of the Rights of People with Disabilities
The United Nations (U.N.) estimates that 650 million people, at least 10% of the world's population, have some form of disability.1
People with disabilities are entitled to the full range of rights available to all human beings. The approval of the Convention on the Rights of People with Disabilities (Disability Convention)2 by the U.N. General Assembly on December 13, 2006, was the latest step towards international recognition of the rights of people with disabilities.
The idea that people with disabilities are entitled to rights began with the U.N.'s International Year of Disabled Persons (1981) and the adoption of The World Programme of Action concerning Disabled Persons3. The early 1990s saw further development with the adoption of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities,4 and the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care.5
The U.N. Commission on Human Rights first discussed the human rights of persons with disabilities in March/April 1998 and adopted a resolution which recognizes that inequality and discrimination related to disability are violations of human rights.6 This resolution was a major breakthrough. It pointed to governments as responsible for protecting the rights of people with disabilities and to the U.N. as having a key role to play in promoting change on this issue. The resolution made several important statements and recommendations for future developments in this area. In 2000, the Commission adopted a new resolution which called for stronger measures to strengthen the protection and monitoring of the human rights of persons with disabilities.7
Further evidence of the growing attention to disability rights was the Quinn-Degener report that examined the current use and future potential of existing U.N. human rights treaties to protect and promote disability rights.8 The report assessed the effectiveness of the committees that monitor the major international human rights treaties in protecting and promoting disability rights and the potential for improving them.
In December 2001, the U.N. General Assembly established an Ad Hoc Committee to consider the idea of a new international convention specifically to protect and promote the rights and dignity of people with disabilities.9
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, over 30 State representatives and N.G.O. and U.N. agency participants agreed on a twin-track approach to disability.10 One track would begin immediately to raise awareness of disability within the existing human rights treaties. A second track would focus on drafting a new international convention specifically recognizing the rights of people with disabilities.11
These important events in the human rights field suggested that it was the right time to strengthen the capacity of people with disabilities to exercise their rights, to bring together the human rights movement and the disability movement and to motivate the U.N., as well governments and political parties around the world, to recognize violations of the human rights of people with disabilities and move toward the elimination of disability discrimination.
The Call to Action: The Almåsa Seminar and Disability Rights Monitoring
In November, 2000, Dr. Bengt Lindqvist, U.N. Special Rapporteur on Disability, held an international Seminar on Human Rights and Disability at the Almåsa Conference Centre in Stockholm, Sweden (Almåsa Seminar). Twenty-seven experts from all regions of the world including disability rights activists, experts on human rights and representatives from all of the major international disability organizations, as well as the Office of the U.N. High Commissioner for Human Rights and the U.N. Secretariat were in attendance.
The Almåsa Seminar focused on the need for human rights monitoring to address the discrimination faced by people with disabilities around the world.12 Historically, disability has been seen as a medical issue (an individual pathology), focusing attention on the individual and his or her particular 'problem' while ignoring human rights violations and the social and legal construction of disability (a social pathology). While human rights abuses against people with disabilities, such as appalling conditions in institutions and policies that called for the sterilization of people with disabilities, have been uncovered through sporadic investigations, seminar participants recognized that to effectively enforce the equal human rights of people with disabilities, a more organized approach to investigations and enforcement is required.
Seminar participants called for the adoption of a disability rights monitoring system focusing on society's disabling environments and barriers, as well as the capacity of people with disabilities to participate in society, rather than on an individual's impairment. A human rights approach highlights the potential for social change to support greater inclusion and respect for rights. Increased international awareness and specific international human rights measures have directed attention to the situation of vulnerable groups such as women and children, and a similar approach is needed for disability.
The Almåsa participants agreed that monitoring the human rights of people with disabilities around the world would expose the extent of violations experienced and be an essential first step in creating change. International data would provide invaluable information and momentum for change, providing evidence for the U.N. and State governments to take action to eliminate abuses of the human rights of people with disabilities. Monitoring would support people with disabilities in achieving justice, equality, self-determination, dignity and worth in their societies.
The Disability Rights Promotion International (D.R.P.I.) project emerged directly from the recommendations of the Almåsa Seminar. The project's goal is to establish a comprehensive and holistic method to monitor the human rights situation of people with disabilities throughout the world.
The Response: A Holistic Approach to Disability Rights Monitoring
In its initial work, D.R.P.I. recognized the many tasks needing to be accomplished in order to move toward a holistic monitoring of disability rights. It was clear that one questionnaire, or one audit or one data collection method would not be sufficient to build towards a comprehensive understanding of the rights of people with disabilities and the discrimination they face. This meant breaking down the work into 'doable' tasks, that would require different skills, different time frames and different knowledge bases. Consequently, the first step was to identify potential collaborators to assist in developing the methodology for this work.
D.R.P.I. decided to develop partnerships with people in various fields from a number of countries to see if they would be willing to share their knowledge of human rights monitoring or assist in the development of data collection tools and methods of analysis. These supportive partners include people who have given time and energy because of their belief in the need for real change, as well as individuals, organizations and international bodies with established expertise around particular tasks.
Guiding Principles of the Disability Rights Promotion International Project:
Five general principles govern the DRPI Project:
- Involvement of People with Disabilities and their Organizations: In full support of the disability movement's mantra, nothing about us, without us, people with disabilities are involved in all aspects of the operation and implementation of the D.R.P.I. project. They are members of the executive, the Advisory Committee, researchers, trainers, and disability rights monitors. D.R.P.I. pilot projects are put into action in partnership with, and under the guidance of, one or more organizations of people with disabilities at the international, regional, national and/or local levels.
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Sustainability and Capacity Building in the Field of Monitoring: To achieve real and lasting change, D.R.P.I. recognizes the necessity for disability rights monitoring to be owned by people with disabilities themselves. Eliminating disability discrimination cannot be accomplished in the span of one project. Such a goal requires a lifetime of continually gauging where the situation is in terms of the rights of people with disabilities and ensuring that the situation is improving. It is not a snapshot but an on-going video. The sustainability of disability rights monitoring, in the hands of people with disabilities themselves, is a primary goal of the development of D.R.P.I. partnerships, tools and training resources.
To ensure that disability rights monitoring activities take place on a regular basis, an emphasis is placed on developing and distributing tools in all three of the focus areas in accessible, easy to use and freely available formats. There is also an emphasis on working with people with disabilities and disability organizations, to build their capacity to use, and teach others to use, these tools to conduct disability rights monitoring, analyze the data collected and use the data to advocate for positive change. - Cross-disability Involvement: Consistent with the need to protect and promote the human rights of all people with disabilities, D.R.P.I. involves people with all types of disabilities in its project management and implementation, thus ensuring representation of the broad range of disabilities.
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Integrating Three Broad Areas for Monitoring: D.R.P.I. has adopted three broad areas for monitoring based on recommendations by the participants at the Almåsa Seminar: monitoring systems, monitoring individual experiences and monitoring media.13 Human rights monitoring has been broken down into these areas to find the discrete pieces of knowledge in order to paint a picture of the current situation faced by individuals with disabilities. Data collected during the monitoring activities in all three areas will be used as evidence for advocacy efforts and improved government policies and laws.
Monitoring systems:
Studying legislative frameworks (laws and policies): Laws not only protect and promote human rights. They may also violate them either through an unfair clause or by not mentioning disability at all. Reviewing how laws violate or protect disability rights, and comparing them to international standards, clarifies the impact laws have on the rights of their citizens and informs the struggle for legal and policy change.
Tracking case law before the courts and statutory human rights bodies (legal cases and decisions): Compiling and analyzing legal cases relating to issues of disability produces evidence of how courts and other decision-making bodies address disability rights issues and interpret and enforce relevant laws. Legal cases and decisions are just as important as the written laws of a country - how a law is interpreted may say much more than the law itself.
Analyzing government programs and practices: Beyond laws and how they are implemented, a broad range of government action has a direct impact on the lives of people with disabilities. Documenting government programs, services and practices that violate human rights - either directly or indirectly - provides evidence and awareness for change.
Monitoring Individual Experiences:
Using personal interviews to find out the actual human rights situation of people with disabilities: Monitoring the exercise of a person's human rights by documenting individual experiences provides knowledge and facts about the reality of discrimination faced by people with disabilities in social, legal and economic situations. Discrimination faced by people with disabilities in both the public and private spheres is monitored to address the complex realities of people with disabilities face and the connections between government and the private sector. Monitoring individual experiences can uncover patterns of discrimination that are evidence of larger systemic rights violations.
Monitoring Media:
Tracking and assessing media depiction and coverage of disability: The media plays an important role in both reflecting and influencing public opinion. Documenting myths and stereotypes found in media portrayals as well as positive reporting of disability issues provides another way to track the experiences of people with disabilities.
In many cases, human rights monitoring has primarily involved what we call systemic monitoring systems and discrimination, that is, gathering information about laws, policies and programs or carrying out service audits to determine whether they meet national and international human rights standards. By expanding the focus of monitoring to include personal experiences and media coverage and depiction, D.R.P.I.'s approach is an innovation in the field of human rights monitoring. The monitoring of all three areas (systems, individual experiences and media) is not only pioneering but also provides a way to get a broader understanding of the extent to which people with disabilities either enjoy, or are denied, their human rights. Individually, each element tells us one piece of the story. Together, the information provides a more complete picture. Laws may say one thing but those laws may not necessarily translate into better lives for people with disabilities. Often the media characterizes disability in a way that contradicts people's real lives and the value of those lives. It is important to look at all three areas together to understand what is really happening. By developing tools and methods for each of the three monitoring areas, D.R.P.I. is ensuring that a holistic view of the human rights situation of people with disabilities is presented and addressed.
Figure 1: Holistic Approach to Disability Rights Monitoring
- Engagement with Multi-Sectoral Organizations: The three monitoring areas point to the multi-dimensional nature of a global disability rights monitoring project and the need to establish and promote communication networks with a broad range of partners, not only geographically but also in other relevant sectors, including universities, research organizations, the community and government. D.R.P.I. also recognizes the importance of developing relationships with organizations currently working in the field of disability rights monitoring as part of their regular activities and connecting people with disabilities interested in engaging in disability rights monitoring with existing resources and expertise within disability and other human rights organizations.
Benefits of Establishing Systems to Monitor Disability Rights
The main purpose of disability rights monitoring is to gather and analyze reliable data to influence positive change in the lives of people with disabilities. International human rights standards are the criteria by which social and legal conditions and individual circumstances are evaluated. Effective monitoring of disability rights at the level of systems, individual experiences and media exposes the full extent of discrimination faced by people with disabilities. It also provides the documentation needed to:
- support disability advocates in communicating disability rights issues and calling for change,
- provide evidence on which governments can implement changes to meet their obligations, and
- ensure the inclusion of people with disabilities in society and draw the recognition of courts, legal human rights bodies, and the media to the abuse of rights.
D.R.P.I. Phase One - Conducting Background Research
D.R.P.I.'s Co-Directors are Drs. Bengt Lindqvist and Marcia Rioux.14 The project has a small coordination centre located at York University in Toronto, Canada.
The D.R.P.I. project involves three phases.
Phase One began in May 2002 and received funding from the Swedish International Development Agency (S.I.D.A.). This phase focused on initial background research to assess the opportunities for disability rights promotion in international and regional human rights systems. Phase One investigated:
- the opportunities for using international human rights instruments to promote and enforce disability rights;
- the types of tools used in projects that monitor human rights; and
- the available training resources for human rights monitors and for more general human rights education.
Since the study of international disability rights is new, most of the research produced for the Phase One report involved a review of material relating to human rights more generally and other areas concerned with the equal application of human rights, such as women's rights. These materials were then analyzed within the disability context.
To supplement desk-based research, leading international human rights monitoring and human rights education organizations were contacted. These organizations provided information on the range and content of training resources related to human rights monitoring; the tools used in monitoring human rights violations; whether or not their organizations had participated in any disability related cases before international or regional human rights treaty monitoring bodies or agencies; and details of other aspects of their work relevant to the D.R.P.I. project.
The Phase One research highlighted many opportunities for disability rights advocacy in the state reporting procedures and individual complaint procedures of the international human rights system. It also identified existing expertise, models, and methodologies related to human rights monitoring. As well, the need for increased disability rights monitoring activities and for disability-specific monitoring and training resources was confirmed. The D.R.P.I. Phase I Report: Opportunities, Methodologies, and Training Resources for Disability Rights Monitoring, is available on D.R.P.I.'s website.
D.R.P.I. Phase Two - Making Disability Rights Monitoring a Reality
Building on the background research conducted in Phase One and working with existing disability rights organizations and other organizations active in human rights protection, D.R.P.I. entered its 'pilot stage' in 2004. Phase Two involves the development and field testing of a comprehensive set of tools and mechanisms that can be used by people with disabilities and their organizations around the world to monitor disability rights in all three focus areas (systems, individual experiences and media).
Working in close partnership with international and local organizations of people with disabilities and human rights advocates, D.R.P.I. is now involved in disability rights monitoring on five continents. People with disabilities and disability organizations are actively involved in this pilot phase. They are gathering and analyzing monitoring data and using this data to engage with human rights systems at the local, national, regional and international levels. The following sections review D.R.P.I.'s progress in the development of disability rights monitoring tools and methods in its three monitoring focus areas.