Seizing the Moment : Taking Advantage of the UN Convention on the Rights of Persons with Disabilities

Keynote Speech

• Hissa Al Thani, United Nations Special Rapporteur on Disability
  Seizing the Moment: Taking Advantage of the UN Convention on the Rights of Persons with Disabilities to Foster Change

Chairperson

• Elisabeth Bauer, Secretary, Board of Directors, Mental Disability Rights International

Introduction

• Elisabeth Bauer

  It's my pleasure this afternoon to introduce to you Hissa al Thanni, from Qatar, who was appointed United Nations Special Rapporteur on Disability in June 2003. This marked the first time that she took her keen interest and her long standing commitment to disability issues into the international arena. Prior to that, Miss Al Thani worked at the local and regional levels on issues of persons with disabilities, and championed disability rights in the Arab world. She was the founder of the National Committee for Persons with Disabilities, and a founding member of the Centre for Persons with Disabilities in Dohar, Qatar.

  She has always been aware that establishing committees and centres is not enough to achieve the right to full inclusion for persons with intellectual disabilities. It must be backed by binding legislation and awareness raising at every level. She was therefore instrumental in drafting the first Persons with Disabilities Law, Law #2 of 2004, in her country. She has also advanced a number of innovative initiatives to the United Nations General Assembly, the World Bank, the The Group of 77 (G77), the South Development Fund, and I could go on and on. These initiatives have been aimed at placing disability issues at the top of the development and human rights agendas, and we've heard all morning how important it is to get intellectual disability, and disability overall, at the top of the agenda.

  Currently, she is spearheading 14 parliamentary symposiums to draft, strengthen and implement legislation on disabilities in the Arab world. The Office of Special Rapporteur has also conducted and published the results of a global survey on government action on the implementation of the Standard Rules for the Equalization of Opportunities for Persons with Disabilities.

  It is with great humility and greater pleasure that I welcome Miss Hissa Al Thani, to the podium to charge this assembly with Seizing the Moment: Taking Advantage of the UN Convention on the Rights of Persons with Intellectual Disabilities to Foster Change. Miss Al Thani?

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• Hissa Al Thani

  Hello, everybody. As-salaamu Alaikum, Peace be upon you. I just want to make two comments before I begin my presentation. So allow me to read them.

  First, I fully support the suggestion made about removing the words mental retardation and disease from the context of intellectual developmental disability. In fact, we should remove them from the dictionary when it comes to disability. Although I heard the justification given by WHO, I believe it's everybody's job to raise awareness, even WHO's, about the right concepts and terminology. And, if we continue to use unacceptable language just because it's commonly used or commonly understood by a large number of people, we would have failed in implementing the most essential condition to achieving equalization, which is raising awareness.

  Second, I understand the mandate and mission of WHO, and the health medical perspective. However, we are now in the post-Convention era, and the right to health is clearly stated in the Convention, as are rights for persons with disabilities, the same as health is a right for all.

  When we speak of right to health for non-disabled persons, we do not assume that they have a disease that needs to be dealt with, but that health is an essential condition to practice fully in life. It is the same for persons with disabilities. People with disabilities are not sick people in need of a treatment. They are persons who have a right to health and medical care in order to function as all people do in society.

  I am very pleased to have been given this opportunity to speak here today, and to be able to come to Thailand, which among many other things, is the home of United Nations Economic and Social Commission of Asia, and the Asia Pacific Development Centre on Disability. And I'm honoured to be asked to address an issue which is very much the topic of the moment. An issue which will determine what the results of having an international Convention on the Rights of Persons with Disabilities will be on the ground. In the lives of persons with disabilities, and the attitudes and behaviours of people, the level of awareness of societies, and the commitment of governments to implementing its articles.

  As the title of this session indicates, it is a priority at this time to draw a roadmap, complete with road signs, which indicates pitfalls and provides contingencies to deal with obstacles on the way. I doubt that any one would disagree that the road ahead is long and our work has only just begun. There are as many reasons for success as there are possibilities for failure.

  And to begin with, we have to be determined that we will not allow our hard won human rights instrument, aimed at protecting and preserving and promoting the rights and dignity of persons with intellectual disabilities, to meet the same fate of some other United Nations documents which remain half-heartedly implemented, and their violations marginally addressed. Now, the celebrations have ended. The euphoria engendered by the adoption needs to be channelled, to ensuring and monitoring implementation and readdressing violations. The work ahead of us is transformational work. We have to transform social barriers, people's attitudes, governments' resistance, we have to create a new social culture and distribute it across the globe so that it touches everyone.

  The movement which started with “What's good for us is good for all” and worked for decades to achieve its rights should now start working on transforming the world into a world good for all. The ultimate aim of finally having a Convention on the Rights of Persons with Disabilities has always been to create a world that is fair and just, equal in the division of rights and responsibilities, non-discriminatory and even burgeoning opportunities, even-handed in its distribution of resources, expansive in inclusiveness and accepting of all.

  The convention does not become reality on the ground until every person with disabilities is able to exercise her or his full potential, when the rights of persons with disabilities can no longer be violated with impunity, when no citizen of any society remains unaware of the rights of the persons with disabilities. When no parent or caregiver feels burdened by a family member with a disability, when no child with disability remains unschooled and uneducated, when no community is without access to medical care, rehabilitation, and assistance for persons with disabilities. When no piece of legislation falls short of protecting the rights of persons with disabilities, the Convention becomes a reality on the ground when these conditions apply to all the people in society, fairly and equitably. Therefore, we have much to do. I, if we are to transform the world into the image, the theory, and the practice of the principles and the articles of the Convention on the Rights of Persons with Disabilities.

  The issue of where do we go from here has been the topic of a great number of seminars, conferences, workshops, consultations, meetings, world assemblies over the past 12 months. The websites of all the international disabilities federations have published guides and manuals to the road ahead. So before I add my own suggestion to what is already out there, I would like to take one step back to where we are today.

  I will give you a brief idea of what we know of the state of the world today, in relation to the implementation of measures aimed at the equalization of opportunities for persons with disabilities. My office has conducted a global survey on government action, on the implementation of the Standard Rules. The first phase of the responses was published on January 2007, and phase 2 will be published in January 2008. The survey, which included questions on each of the measures derived from each one of the Standard Rules, was sent to the 191 member states of the United Nations, to one government body most relevant to disability issues, and to two disabled persons’ organizations in every country. And we received responses from 114 countries.

  In phase 1 of the survey, countries responded to absence or presence of each of the 324 measures relating to the achievement of equalization of opportunities for persons with disabilities. The percentage of responses obtained from each region are as follows: from Africa 53%, Asia 44%, Europe 66%, Latin America, 63%, and the Arab region, an unprecedented 96%. Based on this, what is the state of the world as we move into this new post -Convention era?

  No country has fully implemented the Standard Rules. Globally, no more than 50% implementation has taken place. Implementation of measures on awareness raising, medical care and rehabilitation do not exceed 50% globally. On support services, employment, income maintenance, recreation and sports, and the involvement of disabled persons organizations, implementation globally dips slightly below the 50% mark, while in education implementation rises to above 50%, but not by much and not even close to any percentage that would achieve equalization of opportunities. While implementation of measures leading to accessibility, and measures relating to training of personnel are both at 40%.

  With regard to the right to family life, participating and contributing to culture, the right to participate and to practice religion, the importance of information and research, setting economic policies, the need to coordinate work, the importance of setting up national monitoring systems, the importance of technical and international cooperation, implementation ranges from just below 40% to just above 30%, with the exception of religion which dips below 30%. I looked at how the regions fared at implementation of the measures. It was revealed that in Africa, implementation is at 37%, in Asia at 50%, in Europe at 66%, in Latin America at 33%, in the Arab region at 61%, with an average implementation of no more than 50% worldwide.

  The following slide will show the Standard Rules and some examples of the measures that we identified. The rights that should be protected and the needs that should be met in order for persons with disabilities to be full participants in societies are the same in both the Rules and the Convention, therefore I believe that there is much to learn from this, from the state of the world today by looking at the performance with regard to the Standard Rules. If implemented, these measures, 324 in all, should result in a society that is good for all, where all barriers and obstacles have been removed, and persons with disabilities have equal opportunities to become full participants and contributors in their societies.

  And the next slide shows some of the measures that should be implemented for each of the Rules of the Preconditions. Some of these measures are common to all Rules, while others pertain to the specific action required for that Rule.

  And as you will see from the next slide, the percentage of the implementation of the Preconditions in each region falls far short from the ideal conditions for achieving equalization of opportunities for persons with disabilities.

  And this slide is of the target areas. To illustrate an example of the measures that need to be implemented, I have chosen the measures that relate to accessibility. And as you can see there are measures pertaining to making the physical space accessible, raising awareness of the need and importance of accessibility, making education and information accessible, the scope and coverage of accessibility measures. Do they cover all services, for all types of disabilities, for all persons with disabilities, wherever they are? Monitoring and dealing with shortcomings in accessibility. The state of the world with regard to the implementation of measures on the target areas is not very encouraging.

  And the rules pertaining to the implementation measures necessary to achieve equalization of opportunities and required for the full enjoyment and exercise of equal rights by persons with disabilities. These are the measures. And to show some of the measures required, we have chosen those pertaining to information and research. A look at the world through its regions with regard to implementation of such measures as research and information, economic policies, coordination, involvement of disabled persons organizations, training of personnel, monitoring of the implementation, and technical and international cooperation. And once again we find that results are less than encouraging.

  Knowing therefore that the Standard Rules, and the spirit, letter, theory, and the practice and implementation echo the articles of the Convention, and that the world has not done well in implementing them in accordance with the non-legally binding document to which all member states have committed. I, it would not be a stretch to suggest that we use the results obtained regarding the implementation of equalization of opportunities measures globally, and regionally, in order to draw our roadmap of priorities and action plans, with regard to moving ahead with the implementation of the Convention. But, in the same way, as we take stock of the world's shortcomings in protecting and promoting the rights of persons with intellectual disabilities in order to move ahead, we also need to acknowledge our strengths, many of them gained during the five years of drafting and negotiations leading up to the adoption of the Convention.

  What we have today. What we have today is a strong vibrant diverse international disability movement, and an ability to make and use strategic alliances across disciplines and disabilities, activists, national disabled persons’ organizations, effective self-advocating persons with disabilities, world-wide acknowledgement of the legitimacy of our claims. Fifteen years of the Standard Rules that paved the way to understanding the issues, needs and rights of persons with disabilities. The negotiation and the drafting process that led to the Convention generated a new confidence among organizations of persons with disabilities in their ability to bring about change, as well as confidence in the effectiveness of their lobbying mechanisms, and influencing government positions. It has confirmed to them the importance of forming alliances and the value of collaboration.

  Persons with disabilities have generally become more confident and more vocal as a result of this experience. This positive change constitutes a resource that should be cultivated, nurtured and sustained during the new negotiations aimed at implementing each and every Article of the Convention. It's important at this stage to begin forming strong effective organizations of persons with disabilities in those countries that lack them , to encourage the further formation of coalitions and federations, to support existing ones, and to continue to build the capacity of organizations to promote the implementation and monitor the Convention.

  The Convention understands that the rules on the rights of persons with disabilities are the embodiment of a new international culture.

  International cooperation is an essential ingredient, and universalizing this culture and the transforming societies. Therefore, not only governments should commit to the exchange of ideas, practices, and expertise, in additional to the issue of financial aid, but also among disabled persons organizations at the regional and international levels, and among persons with disabilities at local community levels.

  I would therefore like to see the spirit of cooperation and coordination that prevailed during the negotiations and the drafting of the Convention be extended to its implementation, and a continuous effort to exchange best practices, the ability to nurture and disseminate this new culture. Finally, I'm going to briefly share some of the priorities where I feel efforts need to be made on the way to full implementation of the Convention.

  Road signs, along the road to full implementation. Awareness raising, capacity building, advocacy and lobbying, international and inter-regional cooperation, national monitoring mechanisms, international monitoring systems of evaluation, review, and readdress of violations.

  And to begin with, I believe that whether we are dealing with the Standard Rules or the Convention, or any other document, what needs to be done is the same. There are a set of measures which need to be implemented, and which are aimed at preserving, protecting, and promoting the rights and dignity of persons with disabilities. We are all aware of these measures, and we need to make governments, and officials, and society in general aware of them. Awareness raising, therefore, will remain the priority, and where we need to put all our efforts. Awareness raising, monitoring, whether at the national or international level, and advocacy and lobbying are interrelated, and interdependent.

  The purpose of monitoring implementation should not be seen as a punitive activity, meant to lay blame and incriminate governments. Monitoring can also be used as a tool, to raise awareness, to advocate for better and wider implementation. I have found that to be a very effective technique, in my role as Rapporteur, for the Standard Rules, and one of the reasons I travel far and wide is because I know that the presence of the Special Rapporteur on a monitoring mission in a country, raises awareness about the needs and rights of persons with disabilities. And the measures that need to be taken in order to protect and promote them.

  Closely related to advocacy and lobbying is capacity building, As I mentioned before, the past five years of negotiating and drafting the Convention have sharpened the skills and even the confidence of the disability movement and its representatives. It is now time to transfer those skills to disabled persons’ organizations working at the national and local levels, to help them in their efforts in negotiation and implementation of the Articles of the Convention in their communities, in ways that will affect their lives and improve their situation.

  Finally, it's my firm conviction that the Convention and the movement that has risen around it is a transformational one. In the same way that we expect to transform societies, we should also work at transforming ourselves. When we speak of international and inter-regional cooperation, we should not forget that this also means inter-organizational cooperation across borders and across cultural, economic and development variations. We cannot change the world if we do not change as well.

  Therefore, the alliances that we build should illustrate the transformations we seek. They should be inclusive to all, open to all, encompassing the human rights of all, advocating for the rights of all, cooperating with all to achieve the common goal, transforming the mindset of all toward the creation of a world that is good for all. In this way, I see the disability movement as becoming the human rights movement of the future.

  Thank you very much.

• Elisabeth Bauer

  We have a couple of minutes. Does anyone have something that they would like to ask of Miss Al Thani at this moment?

  She certainly has charged us with a carpe diem, talk about a lead-in with Dr. Parmenter's carpe diem and your Seizing the Moment. But, the charge to stay together, to advocate strongly, that there is power in unity and cooperation that has been evidenced in the writing of the Convention and the developing of the Convention will be essential to its implementation as we go forward ,so, any comments? If not, please join me in giving another round of applause for Miss Al Thani.

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