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UN Programme on Disability   Working for full participation and equality

Report of the Special Rapporteur on Disability
to the 42nd Session of the Commission for Social Development

Chairperson and members of the Commission,

The past ten years have seen the steady progress of disability as a central focus of human rights. This evolution has led to increased activity within the United Nations system as well as by governments and civil society to promote the rights of persons with disabilities in law and policy.

During this time the Standard Rules on the Equalization of Opportunities for Persons with disabilities have served as an authoritative guide for Member States to implement disability programming and develop national plans and policies to ensure that persons with disabilities are brought from the margins of society into the mainstream of the economic, social, cultural, civil and political lives of their communities. Through the monitoring process, successful strategies and best practices have been identified and promoted, and existing gaps in the content of the Rules and areas in which implementation requires additional effort have been recognized.

The monitoring process for the Standard Rules, as articulated in Section IV of the Rules, requires a multi-faceted approach, coordinated by the UN Special Rapporteur on Disability. Specifically, the Special Rapporteur is responsible for promoting and monitoring implementation of the Standard Rules through direct dialogue with States and NGOs and with the input of a Panel of Experts comprised of NGOs with ECOSOC consultative status. In addition, the Special Rapporteur is directed to consult with relevant agencies and individuals within the UN system, seeking their cooperation on implementation and monitoring of the Rules at the national level.

Mr. Bengt Lindqvist served with distinction in the role of Special Rapporteur for three terms. His report on the first mandate of the Special Rapporteur focused on the initial efforts by the United Nations and Member States to implement the Standard Rules, especially those related to Accessibility, Education, Employment, Legislation and Organizations of Persons with Disabilities. In his second report, Mr. Lindqvist stressed the imperative to strengthen the human rights focus and perspective in the Standard Rules and also examined the need to further develop the Rules in relation to the particular issues of women and children with disabilities and the integration of people with developmental and psychiatric disabilities in society. The report on the third mandate included a proposed Supplement to elaborate the Standard Rules in the above-mentioned and other areas, based on the Special Rapporteur’s wide consultation with both governments and civil society.

By the time of the third report, the UN General Assembly had initiated the process of elaborating a convention on the rights of persons with disabilities. The Special Rapporteur cautioned that the development of a new treaty should not overshadow the need for disability to be mainstreamed into the monitoring of existing human rights instruments, as called for by the Commission on Human Rights in Resolution 2000/51. Rather, the development of a convention should take place on a “twin track” with the mainstreaming of disability in the UN human rights system, as well as with the continuing efforts to promote, implement and, where needed, augment the Standard Rules. The concept of a "twin track" approach received broad support in the international community. In addition, the Secretary General solicited the views of Member States on the proposed Supplement.

The enduring importance of the Standard Rules was affirmed through the renewal of the mandate of the Special Rapporteur for a fourth term. I was appointed in June 2003 to fulfil this fourth mandate from 2003-2005.

Faced with an exciting agenda of priorities and activities, I immediately began to establish an office in Doha, Qatar, with staff to assist me in my work. At the same time, I began accepting invitations to attend meetings and seminars. My first meeting, in June 2003, was the 2nd meeting of the UN Ad Hoc Committee on the development of a convention on the rights of persons with disabilities. I was very pleased to see at that meeting the wonderful collaboration between the Ad Hoc Committee and persons with disabilities from all over the world. In September, I traveled to Beirut, Lebanon to meet with the Economic and Social Commission for Western Asia, the International Labour Organization and several human rights organizations concerned with disability issues.

In October, I was invited by the World Blind Union to participate in a sub-regional meeting focused issues and challenges faced by the visually impaired, and, more specifically, on eliminating barriers for visually impaired women and girls in the areas of education and employment. Immediately after that, I sponsored and coordinated a local seminar in Doha for NGOs and local government and business leaders to raise awareness of the Standard Rules and the role of the Special Rapporteur. Later that month, Landmine Survivors Network invited me to participate in the Roundtable Expert Dialogue and Regional Consultation on the development of a convention on the rights of persons with disabilities. I came to New York in December to deliver an address at an event to celebrate the International Day of Disabled Persons. While in New York, I met with several UN specialized agencies to discuss disability issues in relation to their agendas. I then returned to Doha to host an international meeting to discuss monitoring of the Standard Rules and elaborate strategies for future work. We also examined the role of the Standard Rules in relation to a future convention on the rights of persons with disabilities. I was honored to welcome at that meeting distinguished participants and experts from all over the world, including Ambassador Luis Gallegos, Chair of the Ad Hoc Committee on the disability convention, who expressed his views on the important role of the Standard Rules. Most recently, I attended the meeting in early January of the Working Group tasked with the development of a draft convention text for consideration by the Ad Hoc Committee in May-June 2004.

It has been extremely useful to meet with UN agencies, governments and organizations of persons with disabilities to learn about their work and to seek their views and ideas on how best to move forward to promote the Standard Rules and the human rights of persons with disabilities in general. I have many invitations for future conferences and look forward to meeting with many of you in the coming year.

I would also like to take special note of an exciting development in international civil society that has become evident to me as I have participated in meetings and events over the past six months. The disability movement is becoming a global force for change, with increased collaboration among disability groups, between the disability community and governments, and between the disability community and the human rights community. This we see clearly illustrated by the events that have taken place in the past two years as the disability movement has established a role for itself in the convention process, participating on an unprecedented level not only at the UN but also in regional consultations and events. The ideal of this cooperation is envisioned in the Standard Rules and, indeed, the process of developing and implementing the Rules has played a role in facilitating this progress. The Secretary General has observed many times that the importance of civil society participation in the work of the United Nations cannot be underestimated. We must continue to support and promote the involvement of persons with disabilities and their organizations in the work we are doing. As Special Rapporteur, I will do my best to continue the development of these critical partnerships.

I would like to move on now to discuss an important item on your agenda today, that is, the proposed Supplement to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities.

As mentioned earlier, the former Special Rapporteur introduced a proposed Supplement to the Standard Rules as an annex to his third report to the Social Commission. The Supplement was the result of analysis of how implementation of the Standard Rules worldwide had impacted the lives of persons with disabilities. It was concluded that, though important progress had been made in many areas, the following specific topics had not received adequate attention and thus require further elaboration:

(a) fundamental concepts
(b) adequate standard of living and poverty alleviation
(c) housing, including the issue of residential institutions
(d) health and medical care
(e) emergency situations
(f) access to the social environment
(g) communication issues
(h) personnel training
(i) gender
(j) children with disabilities and the family
(k) violence and abuse
(l) older persons
(m) developmental and psychiatric disabilities
(n) invisible disabilities
(o) suggested further initiatives in national policy and legislation

The Secretary General solicited the views of Member States on the proposed Supplement to the Standard Rules and compiled the responses. The 16 responses, representing the views of 40 governments, were largely favorable to the adoption of the proposed Supplement.

The Supplement would enhance the Standard Rules, not only in terms of adding important content to the Rules, but also by creating opportunities to better monitor critical issues that have received inadequate attention. These additional issues should be integrated into the general implementation and monitoring system of the Standard Rules, but, at the same time, receive priority attention so that the frameworks for their implementation can quickly be brought to the same level as those of issues in the main body of the Standard Rules.

While all of the topics included in the Supplement are of equal importance, adequately addressing all of them simultaneously would be an enormous undertaking, requiring human and financial resources that are not immediately available. The large number of topics in the Supplement, in addition to the ongoing process of monitoring the implementation of the Standard Rules, necessitates the selection of a few of the items in the Supplement for immediate attention, with a view to addressing the remaining items progressively. If the Supplement is adopted, I would therefore propose to focus first on the specific issues of children with disabilities, gender, adequate standard of living and poverty alleviation, and developmental and psychiatric disabilities. The goal would be to help identify what can be done both at the UN level and in national policy and legislation. I highlight these particular topics because they are the subjects of ongoing work in the UN and also because they represent issues that have been identified within the Ad Hoc Committee process as needing further development in the effort elaborate a convention on the rights of persons with disabilities.

The first step would be to liaise with focal points within the UN system that are already working on these and associated issues, especially in the context of existing human rights instruments. Cross-sector cooperation is critical to ensuring that disability continues to evolve from a special or separate issue to an integrated component of the mainstream human rights framework. This is the objective of the “twin-track” model that has attained wide support. Such cooperation also ensures that the best information and practices are available for analysis and development.

Secondly, it would be important to identify NGOs with special expertise in these issues, seeking their advice and collaboration in the development of proposed initiatives for States to undertake in national monitoring and implementation efforts. Such consultation would be done in conjunction with the Panel of Experts, but also with local, national and other international NGOs whose work is particularly relevant to the topics identified. The goal of this wide consultative process would be 1) to examine the issues on the local, national and international levels, addressing in particular planning and resource issues; and 2) to determine how the expertise of civil society can best be utilized to ensure the best outcomes in implementation.

In addition, I would like to study the views of governments on these subjects, learning about the current situation in their countries in respect of each topic, how national legislative and programmatic efforts have served to address these issues and how the UN can best facilitate information exchange for successful implementation of the measures outlined in the Supplement.

Subject to available resources, we would also convene topical expert meetings involving stakeholders from all sectors: the United Nations and specialized agencies, governments and civil society.

The above activities to promote implementation of the items in the Supplement would be undertaken alongside the ongoing process of monitoring the Standard Rules.

The adoption of the Supplement to the Standard Rules is an important step in ensuring that the Rules address the many issues that have emerged as priorities over the past years. However, we must remember that the Standard Rules is just one instrument in the body of UN instruments that address – or should address – persons with disabilities. The international disability discourse had a revolutionary change in 1980s, when the World Programme of Action was adopted in 1982. The WPA was the first international document to clearly depart from the social welfare approach to disability, instead adopting the human rights approach. The WPA promoted the human rights of persons with disabilities in all aspects of development, recoginizing that it was society placing barriers in front of disabled persons, and the barriers needed to be removed for full and effective participation of persons with disabilities in society and development. Following adoption of the WPA, the UN Decade of Disabled Persons brought forth new institution and capacity building of individuals with disabilities and their representative organizations. Toward the end of the Decade, the international community developed a number of ideas to strengthen the human rights approach, including adoption of a convention. Though no convention was developed at that time, the Standard Rules were adopted in this context. The linkage between WPA and the Standard Rules is rooted in this development and the monitoring activities of each. In order to bring about further synergy, it is crucial to examine complimentary relationships with other monitoring mechanisms of relevant international norms and standards for promotion of the rights of persons with disabilities.

There have been many discussions in the UN about the need to mainstream disability issues in the human rights framework. Once again, this is the objective of the “twin-track” approach I have already mentioned today. That “twin track” concept has been discussed mainly in relation to the implementation of existing legally binding human rights instruments. The Standard Rules have an important role to play in that process. This is recognized in General Comment number 5 of the International Covenant on Economic, Social and Cultural Rights, which was developed because States Parties to the Covenant were not sufficiently addressing disability issues in their implementation efforts. To assist governments in improving this situation, General Comment number 5 points to the Standard Rules as a “ valuable reference guide ” for the interpretation of States Parties’ obligations under the Covenant as they relate to persons with disabilities.

With this precedent in mind, we must increase our efforts to promote the Standard Rules as a tool to assist governments who are responsible for implementing human rights treaties and also the committees responsible for monitoring that implementation. The Special Rapporteur is invited to work closely with the treaty bodies, as well as the Commission on Human Rights. In particular, and consistent with the proposed priorities from the Supplement that I discussed earlier, we should find ways to work more closely with those committed to successful implementation of the Convention on the Rights of the Child and the Convention on the Elimination of All Forms of Discrimination Against Women. By doing so, we will share our knowledge across issues. The accumulation of information on children with disabilities and women with disabilities that is generated by this collaboration will benefit all concerned.

As well as improving the visibility and use of the Standard Rules in relation to the existing human rights treaties, we must also consider the role of the Rules in relation to the development of a disability convention. Already, the Standard Rules have served as a very useful reference and source of information in the drafting process. At the meeting last month of the Working Group working to develop a draft text for consideration by the Ad Hoc Committee, many discussions included analysis of how the Standard Rules address specific issues and how the content of the Rules can inform the convention development process. The experience and knowledge gained in the past ten years of implementing the Standard Rules provide critical guidance on the issues before the Ad Hoc Committee.

It is clear that the Standard Rules are playing an important role in the process of developing a convention, but we must also look ahead to the future role of the Standard Rules once a convention has been finalized. Through consulting with disability groups and studying the reports and activities of the former Special Rapporteur, it seems that there is a strong view that the Standard Rules should not be viewed simply as a stepping stone to the convention that will become irrelevant once a convention is in place. The Standard Rules is a very different type of instrument than the convention. They provide an action-oriented set of guidelines for policy making and program development while the convention will focus on the human rights principles that underlie these policies and programs. Thus, we can see that the role of the Standard Rules will not be diminished by the convention but that these two instruments will continue to complement one another, helping each one to be more effective than either could be alone. This perspective is clearly reflected in the views of Member States that responded to the Secretary General’s request for input on the proposed Supplement. The overwhelming majority of respondents expressed the belief that the Standard Rules and the convention will be mutually reinforcing.

In conclusion, I would propose as priority themes and activities for the coming year:

1) the adoption of the Supplement to the Standard Rules and a focus for immediate attention on the four topics in the Supplement that I mentioned earlier, namely: children with disabilities, gender, adequate standard of living and poverty alleviation, and developmental and psychiatric disabilities;
2) increased efforts to promote the visibility of the Standard Rules as a tool within the implementation and monitoring systems of the Convention on the Rights of the Child and the Convention on the Elimination of All Forms of Discrimination Against Women;
3) promoting continued collaboration between governments and organizations of persons with disabilities on all issues affecting disability law and policy

Chairperson and Members of the Commission, it is my great honor to serve in the post of Special Rapporteur on Disability, especially during this exciting time. In partnership with governments and the global disability movement, we are acting as agents of long-overdue social change, taking concrete steps toward the day when persons with disabilities all over the world are empowered to claim their human rights. I look forward to continuing to learn from colleagues from the disability community, governments and the United Nations. I believe that together we can continue the progress toward full inclusion of people with disabilities in our world.

Presented by Hessa Al-Thani
Special Rapporteur on Disability
4-13 February, 2004

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United Nations, 2006
Department of Economic and Social Affairs
Division for Social Policy and Development