Foreword and Executive Summary

Forward

The publication you now have in front of you is a progress report, which means that it is part of a larger context, which has to be understood in order to interpret the activities described. It is the report of the second phase of the Disability Rights Promotion International (D.R.P.I.) project. The aim of D.R.P.I. is to build capacity and to develop tools and methods for the effective monitoring of the human rights of people with disabilities. During Phase Two of this project, a number of tools are being developed and tested in a series of pilot projects around the world. The work is being done in close cooperation with organisations of people with disabilities and human rights experts.

To better understand the role and importance of D.R.P.I. in general and, in particular, the achievements presented in this report, it is useful to view them in light of modern international disability history.

The struggle to have disability accepted as a human rights issue on the same level as, for instance, gender rights and children’s rights, was initiated by the various international organisations of people with disabilities in 1981, during the International Year of Disabled Persons (I.Y.D.P.). To some extent, these efforts were reflected in the World Programme of Action concerning Disabled Persons, adopted in 1982 as the outcome of the I.Y.D.P. The world community, however, was still reluctant to abandon the traditional view of disability as solely a social development issue. In 1987, during a United Nations Expert meeting, representatives of the international disability movement urged the United Nations (U.N.) to elaborate a convention on the rights of people with disabilities. Proposals for such a convention made from within the U.N. were turned down by the General Assembly at the end of the decade.

However, the efforts made during the 1980’s were not in vain. Both the 1993 adoption of the U.N. Standard Rules on the Equalisation of Opportunities for Persons with Disabilities and the 1994 report by the first U.N. Special Rapporteur on Disability, Leandro Despouy, significantly contributed to paving the way for a human rights perspective in international disability policy.

During the 1990’s, disability was introduced and analysed as a human rights issue by the U.N. Committee on Economic, Social and Cultural Rights. The result was published in 1994, in the Committee’s General Comment No 5. The final breakthrough came, when the U.N. Commission on Human Rights, actively supported by Mary Robinson (U.N. High Commissioner for Human Rights 1997-2002), identified and recognised disability as a human rights concern for the U.N. in a series of resolutions issued in 1998, 2000 and 2002. As a logical consequence of this development, in 2001, the U.N. General Assembly accepted a proposal by the Government of Mexico to elaborate a U.N. convention on the rights of persons with disabilities. Following the work of a U.N. Ad Hoc Committee and the active participation of the disability movement, the international Convention on the Rights of Persons with Disabilities was adopted by the U.N. General Assembly in December 2006, signalling the successful end of a struggle waged by the disability movement for more than 25 years.

This great achievement to get recognition of disability as a human rights concern for the U.N. is a victory in principle. Yet, as is often the case, the step from principle to reality is a steep one. Analysis of the consequences of living with a disability from a human rights perspective is a new endeavour and constitutes a great challenge for the international human rights system, as well as for the disability movement. There are many unknown forms of discrimination and exclusion in the field of disability which must now be identified, exposed and reported. The instruments needed to do this work were simply not available at the time of the great break-through in 1998.

This critical observation was made at an international seminar, held at Almåsa, Sweden in 2000, at which representatives of all major international disability organisations, human rights experts and U.N. representatives participated. The seminar agreed that an extensive development plan had to be launched to adapt and develop tools, training programmes and methods of analysis to meet this new challenge in the human rights field. This is the historical background of D.R.P.I., which was established as a direct consequence of the recommendations made by this seminar. A five-year plan was elaborated, a coordination centre for the project was established at York University, Toronto, Canada, and long-term financial support was obtained from the Swedish International Development Cooperation Agency (S.I.D.A.)

The first report of D.R.P.I. (Phase 1 Report: Opportunities, Methodologies and Training Resources for Disability Rights Monitoring, 2003) did an inventory of opportunities for using international human rights instruments to enforce disability rights; types of monitoring tools used by human rights monitoring projects; potential partners for human rights monitoring in the disability field and existing training resources for human rights monitors and general human rights education.

This second D.R.P.I. report describes the progress that has been made, in collaboration with national disability organisations and human rights experts in a number of countries, to develop and test tools and methods adapted for monitoring the situation of people with disabilities. When we planted an oak tree at the Almåsa seminar in 2000, I remarked that it is from little acorns that great oak trees grow. Thanks to the efforts of a great number of dedicated people working for and with D.R.P.I. around the world, there are now several tools, training materials and guides for monitoring ready to be used and further developed in a much wider context. As monitoring takes place, our understanding of the human rights situation of people with disabilities is growing, providing new and strong arguments for change for all those of us who fight for better living conditions for people who happen to live with a disability.

Bengt Lindqvist
Co-Director, Disability Rights Promotion International

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Executive Summary

Introduction

This report is prepared and published by Disability Rights Promotion International (D.R.P.I.), a collaborative project, working to establish a comprehensive and sustainable global system for monitoring the human rights of people with disabilities. D.R.P.I. was initiated in response to the recommendations of an international disability rights seminar (Almåsa Seminar) held in 2000 and hosted by Dr. Bengt Lindqvist, U.N. Special Rapporteur on Disability (1994-2002).

The project involves three phases:

• Phase One, completed in December 2003, investigated opportunities for using international human rights instruments to enforce disability rights; types of monitoring tools used by human rights monitoring projects; and current training resources for human rights monitors and general human rights education. The Phase I Report: Opportunities, Methodologies, and Training Resources for Disability Rights Monitoring, is available on the D.R.P.I. website.
• Phase Two involves the development and field testing of a broad range of tools, methodologies and training resources that can be used by people with disabilities and their organizations around the world to monitor disability rights in three focus areas (systems, individual experiences and media). This second phase emphasizes: capacity building within organizations of people with disabilities and international and national human rights institutions; monitoring; and raising awareness and encouraging action.
• Phase Three will use the instruments and tools developed and field-tested during Phase Two to expand capacity-building, training and monitoring activities to many countries. Monitoring activities run by people with disabilities will be supported in five regions and will act as focal points for disability rights monitoring activities and training throughout Phase Three and following the completion of the D.R.P.I. project.

This report outlines D.R.P.I.’s progress mid-way through Phase Two.

In keeping with the recommendations of the Almåsa Seminar, D.R.P.I. has adopted a holistic approach to disability rights monitoring. A holistic approach involves monitoring in three focus areas:

• monitoring systems (assessing the effectiveness of laws, policies, programs and case law in protecting and promoting the rights of people with disabilities);
• monitoring individual experiences (gathering information about the actual human rights situation of people with disabilities on the ground); and
• monitoring media (examining both the coverage and depiction of people with disabilities in the media).

In many cases, human rights monitoring has involved primarily an examination of relevant 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 in the disability rights context to monitoring personal experiences and media coverage and depiction along with systemic monitoring, D.R.P.I.’s approach is an innovation in the field of human rights monitoring. More importantly, D.R.P.I. maintains that monitoring in all three focus areas is not only innovative but necessary in order to gain a comprehensive understanding of the extent to which people with disabilities either enjoy, or are denied, their human rights. Individually, each element tells only one piece of the story. Together, the information provides a more complete picture. By developing tools and mechanisms for each of the three monitoring focus areas, D.R.P.I. is ensuring that a holistic view of the human rights situation of people with disabilities is presented and addressed.

The information gathered through disability rights monitoring is used to bring about positive change in the lives of people with disabilities. It promotes greater awareness of disability discrimination, informs advocacy for equal rights, encourages the development of inclusive policies and laws and contributes to monitoring State responsibilities under international and regional human rights treaties, including the new U.N. Convention on the Rights of Persons with Disabilities (Disability Convention).

Phase 2 Activities

Background

Chapter 1 of this report sets out the background, context and methodology for the D.R.P.I. project. It notes the following five general principles that guide all project work:

• Full 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 generally.
• 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.
• 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 understand the human rights situation of people with disabilities fully, that is, analyzing data from 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 sustainability of disability rights monitoring efforts.

The remaining chapters outline D.R.P.I.’s progress in the development of disability rights monitoring tools and methods in its three monitoring focus areas.

Monitoring Systems

Chapter 2 reviews the methods D.R.P.I. has developed to collect and analyze systemic disability rights information in countries around the world.

• Through the legal education and research project, D.R.P.I. is encouraging law schools to make disability rights research core to the knowledge skills that students learn. Through this initiative, an ongoing interest in the area of disability rights research is being fostered among students working in the field of human rights.
• D.R.P.I. has developed a preliminary country-based template to assist with the collection of legislation, policy and program data specific to disability rights. The template is designed to gather information addressing all categories of rights (civil, cultural, economic, political and social) and serves as an assessment tool, identifying gaps in legislation and policy.
• D.R.P.I. is collaborating with a London-based N.G.O., Interights, to identify a strategic disability rights legal case in support of advancing the status of international human rights law, as a whole.
• D.R.P.I. is collaborating with the Asia Pacific Forum of National Human Rights Institutions in the development of a tool to track disability cases decided by national human rights institutions.

Monitoring Individual Experiences

Chapter 3 outlines the tools and methodology developed by D.R.P.I. to monitor the actual situation of people with disabilities including:

• An Interview Guide, including both open-ended and semi-structured questions designed to allow people with disabilities to tell their own story and identify the rights issues that are most important to them.
• A Training Course that prepares monitors with disabilities and field assistants to engage in monitoring the individual experiences of people with disabilities in the field.
• A Training Manual for Monitoring Individual Experiences which provides information about disability rights generally, monitoring techniques, confidentiality in monitoring and how to work in the field.
• A Trainers’ Manual that can be used by disability organizations to train others how to monitor on a continuing basis, contributing to the sustainability of monitoring efforts.
• A Data Analysis Manual to assist in the process of organizing and analyzing the disability rights data collected during interviews in the field and writing reports outlining results. The manual encourages the development of partnerships with academics from local universities and/or staff of national human rights institutions who can assist with the coding and analysis of the individual monitoring interview data.
• A Field Methodology Guide for national organizations of people with disabilities to use when overseeing the administration of monitoring projects.

Each of the above tools and methods is being field tested in a series of pilot projects in countries around the world (Australia, Cameroon, Canada, Croatia, India, Kenya and Sweden). Once they have been further refined, they will be widely available for use by organizations of people with disabilities, human rights organizations, government, the media and any others interested free of cost.

Monitoring Media

Chapter 4 reviews D.R.P.I.’s progress in developing tools and mechanisms to monitor the depiction and coverage of disability in the media, including:

• Collaboration with a team of researchers from the State University at Buffalo, U.S.A. and researchers from the University Of Umea, Sweden who have developed both quantitative and qualitative methodologies to facilitate the analysis of media depiction and coverage of disability issues around the world.
• Assembly of an international Panel of Experts in disability rights, media communications and disability-specific media to draw on their advice and expertise in the analysis of the disability media monitoring.
• Development of an online media monitoring tool that will be made widely available and permit organizations of people with disabilities, government, academics and others who are interested to conduct their own studies of disability-related media reports from a wide variety of sources, over a broad time period.

Building Partnerships & Networks

Chapter 5 sets out the collaborations D.R.P.I. has undertaken with disability, human rights and other organizations to build on existing expertise and develop the international and multi-disciplinary networks needed to support an international disability rights monitoring system. D.R.P.I. is currently collaborating formally with more than forty organizations of people with disabilities, human rights N.G.O.s, university research institutes, human rights institutions and government agencies.

Disseminating Knowledge

Chapter 6 outlines the steps D.R.P.I. has taken to disseminate the knowledge created by the project through the development of virtual knowledge networks, an interactive and fully accessible website, oral presentations and written publications.

Moving Forward - Twin-Track Approach to Disability Rights Monitoring

D.R.P.I. has made significant progress toward achieving its goal of developing the tools, capacity and infrastructure needed to monitor disability rights globally. When the project began in 2002, disability rights advocates around the world generally agreed that the twin-track approach to protecting and promoting the rights of people with disabilities should be adopted. That is, while continuing to advocate for a disability-specific international human rights convention, efforts should also be made to develop the tools and mechanisms necessary to recognize the protection and promotion of disability rights within the existing international human rights system. With the U.N. General Assembly’s adoption of the Disability Convention on December 13, 2006, a new and very important chapter has begun for disability rights monitoring.

In this new era, pursuit of a twin-track approach remains essential to ensuring the full enjoyment of all human rights by people with disabilities and to fighting the battle against the continuing discrimination and sheer abandonment of people with disabilities to social and political exclusion. The work of the first track is far from complete. States must ratify the Disability Convention before it comes into force in any country. Also, once in force, the Disability Convention will have to be effectively implemented in order to actually improve the lives of people with disabilities. The work of the second track also continues. Efforts must persist to ensure that the monitoring bodies of other international and regional human rights conventions recognize and uphold their obligation to ensure that the rights of all people - including people with disabilities - are being protected, promoted and fulfilled. Holistic disability rights monitoring, which involves looking at monitoring systems, individual experiences and media, is important to providing data to test the effectiveness of both the disability-specific and other human rights conventions in achieving these goals.

People with disabilities and disability organizations have a key role to play in the monitoring process, a role clearly recognized in the text of the Disability Convention. In order to play this role, people with disabilities and disability organizations need to build their capacity to monitor obligations under both the Disability Convention and other international human rights treaties. D.R.P.I. is now involved in disability rights monitoring on five continents, working in close partnership with international and local organizations of people with disabilities. D.R.P.I.’s monitoring methodology, with its stress on building the capacity of people with disabilities and disability organizations, will provide the means through which the disability community will be able to engage in both national and international monitoring processes.

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