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Let the World Know
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"Let the World Know"

Report of a Seminar on Human Rights and Disability
Almåsa Conference Centre (Stockholm, November 5-9, 2000)

Published by the Office of the Special Rapporteur on Disability
of the United Nations Commission for Social Development © 2001


Preface and Acknowledgements *

I Introduction *

II Background to the Seminar *

III Timing of the Seminar: An Opportune Moment *

IV Purpose of the International Seminar: From Rhetoric to Reality *

V Organization of the Seminar *

VI General Directions for Mainstreaming the Human Right of Persons with Disabilities *

VII Developing an Overall Structure for Reporting Violations of the Human Rights of Persons with Disabilities *

VIII Understanding What Amounts to an Infringement of Human Rights *

IX Building a System for Dealing with Infringements of Human Rights *

X Making it work: Developing Instruments for Documenting Infringements of Human Rights: The Five Working Groups Report *

  1. Documenting Individual Cases *
  2. Documenting Legal Cases/Jurisprudence *
  3. Documenting the Media *
  4. Documenting legislation *
  5. Documenting Programmes, Services and Practices *

XI. Additional General Recommendations to Strengthen the Use of International Instruments on Human Rights of Persons with Disabilities

XII Concluding Remarks: From little acorns great oaks grow *

ANNEX A: List of Participants (including observers, and support staff)

IX. Building a System to Deal with Infringements of Human Rights

Recognizing that there are many forms and ways of infringing the human rights of persons with disabilities and that no single mechanism or instrument is likely to be powerful enough to deal with all the types of infringement, the seminar worked on the issue from five distinct perspectives. In each of these participants struggled with both structure and content to enable information to be collected and ultimately collated to provide an overall picture of how human rights and disability intersect. The limited time frame of the seminar did not enable participants to deal with the way in which these various methodologies for documenting human rights infringements would interface with one another. The proposed methodologies do, however, enable some order to be imposed in getting the process started at several different levels and of providing ideas for people to plan the next steps.

A number of questions arose in developing the guidelines to document infringements of human rights; such questions as: how will people with disabilities be involved? how will the work be systematized? what are the ways of encouraging people to participate? what will be the strategic mechanisms for documenting infringements of human rights?

Involvement of persons with disabilities in the work

Obviously any instrument, whether very simple or very complicated must be tried out or field-tested with the people who will be using it. An instrument is not perfect if it is not used or if it means nothing to those who are supposed to be the beneficiaries of the work. Persons with disabilities have to be involved at every level of the design, development, data collection, collating and reporting of material and the action that results. They are central to whatever process is developed.

Systematizing on-going work and initiating reporting on an international scale

The seminar investigated ways to encourage the on-going work and to initiate the work in organizations and countries where it has not yet begun. It constitutes a major action to create international cooperation amongst disability rights organizations, governments, and the United Nations to move forward in the area of disability that has been neglected in the field of human rights.

Ways of encouraging persons with disabilities to participate

The participation at this seminar of the six international organizations of persons with disabilities, constituting the panel of experts who consult with the Special Rapporteur, is an indication that they acknowledged their major role in activating their member associations and in supporting the seminar initiative. The consensus is that there will need to be a significant training component to ensure the reporting and use of the information.

A second and equally important element was to ensure that the instruments developed were in user-friendly formats and in alternative formats so that all persons with disabilities can participate. The instruments must also take into account that persons with disabilities come from different cultural backgrounds and have different levels of understanding, reading and writing skills.

Mechanisms for documenting the infringements of human rights

Participants at the seminar provided a number of mechanisms for documenting and reporting infringements of human rights. This is important to meet the challenge that the Office of the High Commissioner for Human Rights gave to the Seminar: "…to find a way to ensure that the rights proclaimed in international norms and legislation are translated into real improvements in the lives of persons with disabilities." Together these mechanisms provide a well-rounded holistic picture of the systemic and multi-faceted nature of infringements.

Each of these mechanisms has strengths in itself as well as the potential to generate some part of the overall knowledge needed. They do not rely in their entirety on persons with disabilities and their organizations, but in addition, propose using existing resources and finding support among those who are natural allies in human rights work. The coherence of information that can be collected through these various approaches is a key issue. More detail is provided in the individual working group reports (chapter X). Below is a brief summary of the proposals.

To document individual cases of an infringement of a human right is important to ensure that, as a minimum, gross abuses are reported to the United Nations immediately. The impact of even one individual case of an infringement of a human right, being reported internationally, can be significant, as has been shown in the case of women, refugees, immigrants and others. Equally important is that the information can be gathered to paint a picture of how profound the infringement of the human rights of persons with disabilities is. It is also important to make visible the unawareness and, even more seriously, the cover-up of abuses of persons with disabilities.

As a methodology, the idea of a "Human Rights Specialist" in individual organizations, who is provided with support and charged with the responsibility for obtaining evidence of individual abuse, was investigated. A Specialist was proposed who would be located both at the INGO level and at the national level where there are national cross-disability organizations of persons with disabilities. The reporting of individual cases would be carried out through a national organization to an international alliance, which would collate the information. A "Human Rights Specialist," as proposed, would guarantee that the documentation and reporting would be done to ensure credibility, privacy, and confidentiality of the information. It would be owned by persons with disabilities and contain an element of support for individuals.

To document legal cases and jurisprudence, the seminar proposed creating and maintaining a global database on the Internet. The database would consist of court cases and administrative decisions related to disability and human rights. It would be a compilation of both international and national case law using international standards to address either disability rights or interpretations of general or disability-specific rights guarantees. In addition, it was proposed that a guide to legal literature about human rights should complement the global database. The issue of who would create the database, both nationally and internationally, was discussed. It was decided that the most logical place for such a database to be housed nationally, would be with ministries of justice. Alternatives were proposed in the event that this was not feasible or not taken up by national ministries of justice. In particular the idea was raised of using the resources of law associations, law schools, DPOs, anti-discrimination or human rights bodies or other statutory bodies. The global database, to which national governments would upload their data, should be at the Office of the High Commissioner for Human Rights.

The establishment of a Disability Rights Media Watch (DRMW) was proposed to document human rights infringements in and by the media. This is envisioned as a body that would develop uniform criteria to monitor the media throughout the world. The work would include media reports violating human rights in language and in presentation as well as stories about the infringements of human rights of persons with disabilities. The DRMW would be responsible for compiling, verifying, and analyzing the information collected and for developing and distributing reports based on the material. The information would be maintained in an international database coordinated by the Disability Rights Media Watch. Collaboration with media watches on other issues would enable an exchange of information and strategies for action. It could also provide the avenue for the collection and verification of the data. The importance of the involvement of DPOs and INGOs was stressed as fundamental to the effectiveness of the DRMW.

Discussion of documenting legislation led to a proposal to use existing national legal information systems as sites for the national compilation of data and to coordinate data across nations. The types of organizations that were highlighted as having the capacity and competence to carry out this work included: university departments and law schools, research or social policy agencies, and human rights organizations. INGOs or many national DPOs, who already have within their mandate to do policy and legislative reviews, were pointed out as being in a very strong position to document their work and make it available in a uniform manner.

The importance of systematically documenting legislation was also underlined. While legislation may protect human rights, it may also be used in a way that creates inequality or exclusion. Legislation may be silent and, by its silence, result in the infringement of a right. All of these aspects were taken into account. It was pointed out that many countries have not yet recognized that the treatment of persons with disabilities falls within the area of exercising human rights. These are the cases where the media watch, the individual case reporting and the legislative review will need to be highly interactive.

A proposal for a comprehensive multi-dimensional reporting manual was presented as the most appropriate tool for documenting infringements in programmes, services and practices. Such a manual would be useful in directing attention to issues of particular concern. It would also provide an opportunity to look at a single type of programme or service or practice from all perspectives and to document the way in which the combination of law, policy, practice and social attitudes cumulatively impact on human rights. It is proposed as an effective tool for an issue-by-issue approach to documenting cases of infringement of rights. Recognition was also given to its importance in assisting DPOs wanting to prepare shadow reports to an official government report submitted to the United Nations under one of its treaties. It could also assist governments in assessing their effectiveness in meeting their human rights and citizenship rights guarantees.

Shared elements

What all of the five proposals have in common is a structure and central collection point for information and for encouraging reporting and follow-up action. This is crucial to the effective reporting of infringements in any area. While the strategies are different and logically have to be, they each have that component as a basis for cohesive, accurate, timely and current information. Strong recognition was given to the possibility of retribution against individuals reporting the infringement of human rights and the need to protect individuals from any repercussions because they reported a case of abuse. This would be one of the tasks of those collecting the reports and collating the information.

Each of the five working group reports recognized that all data collection instruments had to be informative as well as providing a tool for data collection. The workshops recommended that particular examples should be provided in the data collection instruments. There should also be a clear, uncomplicated guide to international norms and standards as well as clear statements of the source (e.g. the International Covenant on Economic, Social and Cultural Rights or the International Covenant on Civil and Political Rights), and an indication of the specific rights (for example, the right to education, the right to work, the right to be free from torture and so on).

Following up the proposals

The proposals by the working groups were made as an initial draft, and the need for further development was recognized. One of the ways put forward for this to occur was to use the proposals with activist groups, either those engaged in a reporting exercise under one of the United Nations human rights treaties, or those undertaking an assessment of national law and practice in relation to the enjoyment of human rights. It was also suggested that it would be necessary to use the proposals in some regions with less knowledge of rights and without the experience of reporting rights abuses. Development of the proposals may also need to be supplemented by further reference to the existing guidelines and observations of the treaty bodies.

Together these proposals provide a broad, encompassing methodology to monitor the infringements of human rights. Each one will provide in itself important data and together they bring the acts of discrimination and of human rights abuses fully into the domain of international standards, by which we judge how well nations are doing in ensuring human rights. They will provide the evidence that is seen everyday throughout the world of the outright denial of equality, dignity and justice for persons with disabilities. They will document the intended and unintended infringements of rights and the individual and systemic denial of rights. These proposals will create a basis for assessing how well the international community is meeting its own standards.

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