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Human Rights and Disability Rights Advocacy

Foreword - Ambassador Don MacKay, Chair Ad Hoc Committee

The adoption of the Convention on the Rights of Persons with Disabilities, by the United Nations General Assembly on 13 December 2006, marked the end of a long journey by civil society.
For many years the international disability community had tried to persuade States that a new convention was required to ensure the full enjoyment of human rights by persons with disabilities. It was an uphill battle, but once States had finally accepted that proposition, we saw the development of a remarkable negotiating partnership between civil society and the Member States of the United Nations.

As a result of that negotiating partnership, the text of the Convention itself also bears the firm imprint of civil society.

The Convention on the Rights of Persons with Disabilities is a comprehensive and detailed document, and civil society bears much of the responsibility for that. In contributing to its negotiation, disabilities organisations had in the forefront of their minds the practical problems faced by their constituencies. They wanted to ensure that real world problems were carefully dealt with in the Convention, and that it rose above the mere theoretical.

The need for that was clear. The existing generic human rights instruments had fallen far short in their protection of the human rights and fundamental freedoms of persons with disabilities. For the most part this was not due to a deliberate avoidance by States of their obligations.

During the negotiations, civil society emphasised the need for a “paradigm shift” in the way that governments and societies deal with matters relating to disabilities. Central to the Convention is this “paradigm shift” in the treatment of persons with disabilities, from being objects of the law to being subjects of the law with the same rights as everybody else.

Implementation will also require a continuation of the remarkable partnership that developed between governments and civil society. The Convention is quite specific in requiring governments to actively involve disability organisations in the development of policies and action to implement this Convention. Good practice suggests that governments would do this anyway. But governments need to move beyond the just the black letter of the law, and to ensure that this happens in a meaningful way. Policy development will benefit from that, as will our societies overall.

Preface - Ron McCallum AO, Vice-Chair CRPD Committee


It is essential to appreciate that the “movers and shakers” for the CRPD were civil society, that is DPOs and persons with disabilities. Without the expertise and pressure from civil society which changed the minds of many governments, I venture to conclude that we would not have this Convention at the present time.

This splendid volume … tells the story of how the CRPD was negotiated. … [T]he narratives set forth between its pages, are viewed from the varying perspectives of the authors of its chapters, and these contributions piece together the article by article negotiations of the CRPD. These essays which are both analytical and explanatory, give the background of the articles of the CRPD.

As one of the twelve inaugural members of the United Nations Committee on the Rights of Persons with Disabilities, whose primary function is to monitor the CRPD, this volume is a splendid tool for those of us seeking to operate the CRPD.

Introduction - Maya Sabatello & Marianne Schulze, editors

The Convention on the Rights of Persons with Disabilities (“CRPD” or “the Convention”) entered into force on May 3, 2008. It is the first human rights treaty to be adopted after the end of the Cold War; the first one to be adopted since the highly successful 1993 World Conference on Human Rights and the Vienna Declaration and Programme of Action that that Conference yielded; the first one to be drafted and adopted at the beginning of this century; and the first human rights convention to be open for signature to regional integration organizations. The establishments of the UN High Commissioner for Human Rights (OHCHR) and of National Human Rights Institutions (NHRI) since the World Conference have also been instrumental developments in the disability context. The rise of transnational civil society, which includes not only Non-governmental organizations (NGOs), but also, inter alia, peoples’ movements, formal and informal associations, grass-roots coalitions and indigenous peoples’ organizations, as well as media and communication technologies, have significantly strengthened the national and international discourse on the issue. It is the combination of these developments that have enabled the dialogue on disability rights to take place. They enabled the transnational disability-rights movement to plant roots and later on, to mushroom to unprecedented levels in an otherwise unwelcoming world. They enabled the global community to think and to re-think about what disability is and how we treat-or how shall we treat-our members of society who are prone to be more vulnerable. Moreover, they enabled the global community to reflect on what universal notions of human rights, subjectivity, and dignity mean at the beginning of the twenty-first century.

The United Nations’ (UN) eighth “core” human rights treaty marks a shift that elevates persons with disabilities from being remarkably invisible within human rights discourse to being protected by a multilateral treaty that frames all human rights as accessible and inclusive. Very much in line with the seminal report written by Gerard Quinn and Theresia Degener, two internationally known disability rights experts and leaders for the first working session of the convention process, the Convention replaces the hitherto prevalent medical approach to disability with the social model as the basis for the rights of persons with disabilities. Rather than focusing on impairment as a personal trait that needs to be “corrected,” and possibly “eliminated,” it emphasizes the need to remove the social and environmental barriers that exclude persons with disabilities from full and effective participation in society and enjoyment of all human rights. The Convention comprehensively examines the rights of persons with disabilities, so as to ensure a human-rights-based approach to inclusion; as an historic first, it also enshrines general principles, among them the need to “respect difference.”

In light of this achievement, it is timely and important to step back and reflect on the path that has brought about this paradigm shift. What were the successes? What are the shortcomings? And what caused either?

As the Convention has entered into force, with 110 countries as well as the European Community having already ratified it and signatures from more than 40 other states, there is perhaps no better time to evaluate the drafting process of the first human rights treaty of the twenty-first century.

The adoption of the Convention was preceded by at least two decades of activism. Although the most visible origin of the disability-rights movement is rooted in Western NGOs and individual activism, it was not long before disability activism spanned across the globe. An intensified processes of democratization, a significant rise in the involvement of the so-called “third force” (that is, civil society) in international affairs, globalization, and the evolvement of new, high-tech means of communication have all played major roles in this trend. Information sharing within and across states, as well as between civil society organizations (CSOs), states and the UN bodies that are responsible for the promotion of human rights, have opened the door for many actors from smaller, newer, and less powerful nations to raise their own voice in a manner previously unheard of. The culminating impact was significant. While historically diverse and—like many other organizations with shared interests—often prone to disagreements, through their representative organizations (often called Disabled People’s Organizations or DPOs), a variety of NGOs, and individual experts, persons with disabilities played an instrumental role in the effort to mobilize the international community to take disability rights seriously, particularly during the drafting process. More than that, civil society participation in the process exceeded by far previous cases of involvement in the formulation of international human rights treaties. It has, in fact, taken the idea of “new diplomacy,” referring to civil society’s involvement in international processes, to a new level.

A variety of NGOs, and individual experts, persons with disabilities played an instrumental role in the effort to mobilize the international community to take disability rights seriously, particularly during the drafting process. More than that, civil society participation in the process exceeded by far previous cases of involvement in the formulation of international human rights treaties. It has, in fact, taken the idea of “new diplomacy,” referring to civil society’s involvement in international processes, to a new level.

The work of civil society organizations was also highly effective. Much of the work of the disability-rights movement was organized through the International Disability Caucus (IDC), established as the “official” body to represent the disability community, and characterized by a rather loose structure. Mobilized by NGO representatives that attended the first session, the International Disability Alliance (an international umbrella group established in 1999; IDA), the Centre for Rehabilitation, and Landmine Survivor Network held the dominant leadership. Learning from the experience of the children’s rights movement, but also from the more recent efforts of NGOs on international fora for the International Campaign to Ban Landmines and the Coalition for an International Criminal Court, the goal was to advocate for disability rights as much as possible in a coordinated manner and by consensus.

At least one Caucus meeting was held daily, and other meetings were held by the various working groups that were composed to facilitate civil society’s activity. A steering committee was established, comprised of representatives from the IDA, regional representation, and other NGOs representatives. The IDC also included a drafting group to develop joint position statements on behalf of the disability community (after their approval by the IDC) to be delivered at the plenary meetings. Additional regional, non-alliance NGOs and communication working groups were established, and for many of the draft provisions a facilitation team was appointed (or voluntarily took on the role).

Another interesting and unique characteristic of the involvement of civil society in the process was evident in the relationships that developed with states’ delegates. In addition to unusually “open doors” for discussions with DPOs/NGOs, representatives of DPOs were also included in official state delegations. Furthermore, states made a point of sending a government representative with disabilities. The rise of and respect for National Human Rights Institutions (NHRI), which often included-and were led by-persons with disabilities has also been important in this context. Indeed, the negotiation of the CRPD was the first time that NHRI participated and contributed significantly to the drafting of a core human rights treaty, giving them a prime opportunity to share their insights and utilize them for the purpose of a new human rights convention.

The impacts were obvious. For one, persons with disabilities were made visible. Second, voices “from within” were in fact taking over places of power of those “from outside,” shifting the dynamics of the negotiations. Indeed, it is this close collaboration between civil society and states’ delegates that led some to believe that without the consent of the disability community, the Convention would not have been adopted. Thus, having “supporting representatives” from within the all-states-institution has arguably played an important role in the ultimate result.

Naturally, however, the disability community was not free of tensions. Questions about the “authentic” representation of organizations for persons with disabilities (in contrast to organizations of persons with disabilities) surfaced. Representatives of organizations who were not only representing disability rights were not always easily brought into the fold. Disagreements also occurred within the “core” disability rights community. Aside from the particular disability-related interests that the DPOs tried to promote, controversies also arose with regard to the policies the Convention should adopt. Additionally, South-North divides were also present. Consequently, while some of the representatives tried to negotiate their positions within the IDC, others chose to stay outside. Yet as all of the voices contributed to the overall result, the implications of this diversity from within are critical if we are to develop a greater understanding of what it means to involve transnational members of civil society in UN-level negotiations.

This book is a first attempt to understand what happened by bringing together a collection of the many voices that were heard in the process. While the final chapter of the book proposes a more comprehensive and observational outlook on the process, including a comparison with previous negotiations on the international level, the individual chapters separately discuss how the authors’ work with-and without-the coalition of NGOs facilitated their advocacy. Coming from Western and “Southern” states, from developed and developing countries, from a variety of ethnicities and social groups (demonstrating diversity of gender, age, indigenous and religious backgrounds, etc.) these authors have in common the many barriers-social, cultural and legal-that they faced in their advocacy campaigns.

Lex Grandia - Imagine to be part of this

To be elected to the first committee to draft a text for the Convention on the Rights of Persons with Disabilities was a challenge and an honor for me. At that time I was Secretary General of the World Federation of the Deafblind (WFDB), a small growing worldwide representative organization of persons with deafblindness. Later I was elected president of WFDB. That election to the drafting committee happened in the fall of 2003, after the second Ad Hoc Committee (AHC) session, where UN delegates discussed us, but almost without us. We, the Disabled Peoples Organizations (DPOs), on the way to form the IDC, were permitted to be in the meetings as observers only from time to time. We observed that delegates clearly did not have any knowledge or experience in the disability field and that they could not imagine how it is to live with a disability. “Care,” “protection,” and “vulnerable groups” were often-used words. Disability seemed to be the same as inability.

The negotiations for the Convention eventually came to embrace an unprecedented role for civil society organizations, including DPOs. Making this happen required new partnerships among persons with disabilities-among people who might otherwise have little in common aside from being defined as disabled by their respective societies. We all have our own different life histories, educational backgrounds, cultures we live in, and experience our different disabilities and barriers. We have to make this understood. I was searching for all our different qualities developed and our capacities, to combine them and share them, evolving into a big voice with a lot of contributions to society. In what follows, I reflect on finding the balance between the wants and needs of a specific group-persons with deafblindness-and the larger group of persons with disabilities. Imagine: together we made ourselves heard!

[Initially], we decided to write down the most important bottom lines of what each organization wanted to achieve. I consulted my member organizations in the WFDB and professionals working in the field. I looked at resolutions of formal conferences. For the rest, it was necessary to use my imagination with the knowledge I have of persons with deafblindness worldwide. That was not so easy. Persons with deafblindness are very different. Only a few are totally deaf and totally blind. Some are totally deaf and have sign languages as their mother tongue. Most have spoken languages as their mother tongue, being blind or still having some hearing or vision left. There are persons with deafblindness with additional physical, intellectual or psychosocial disabilities. Most persons with deafblindness live isolated in the family or in an institution, isolated because of lack of communication, information and mobility. Lack of education has made it impossible for persons with deafblindness to formulate their rights and needs to be able to participate in society. Most of the activities with or for persons with deafblindness were related to entertainment; they were not intended to get Deaf-blind people to be politically involved. The only clear message from the worldwide community was: “get deafblindness recognized and mentioned in a convention as a unique disability.”

On November 22, 2003 I formulated the following bottom lines for persons with deafblindness …:

We, persons with deafblindness want to:

• Be considered as persons having a separate and unique disability;
• Be respected as personalities with our own, individual capacities;
• Have a legal status with rights and duties like other citizens;
• Get quality advocacy, in case we are not able to speak for ourselves;
• Develop a communication system, a recognized language to interact with the surroundings, environment and other people;
• Get quality and appropriate interpreters and guide services whenever we need;
• Get quality education and rehabilitation at all ages, based on our capacities;
• Chose our own ways of living, alone or with others;
• Be a part of a family, to have a family life (or not);
• Be persons with self-determination and autonomy;
• Be able to read and write, using Braille or large print;
• Get information about society, politics, and all kind, we wish to get according to our personal interest;
• Get access to the information society;
• Be able to live and organize our daily life with accessible tools and technical aids;
• Have access to our own economy: coins, banknotes, money;
• Be able to travel;
• Have access to all kinds of art, culture and literature;
• Obtain a qualified and satisfying job according to our capacities;
• Be political and social active;
• Act as artists, authors or other cultural executors;
• Develop and govern our own organization;
• Develop, and be responsible, for our own service programmes.

One wish I could not formulate well was to have the right to do things at our own speed (an action against the speedy society).

It is funny to look back at these bottom lines five years after. I did not really use them later on during the process, but I must have kept them in mind. Of course, many of them were not specific to persons with deafblindness, but the lines needed to be translated into the situation of persons with deafblindness. It was good to see that, when all of our bottom lines were collected on our mailing list and discussed at Madrid, that we had a lot in common. During the whole process one of the big difficulties was to cope with each others’ differences within the disability movement. We found out how little we know about the consequences of our different disabilities. During our daily e-mail discussions, every day without any break, during the next three years, we needed to explain ourselves to each other again and again, including which formulations in a proposed convention text would benefit one group or harm another. Mutual respect was needed; the more time pressure we had, the better it worked.

The respect consisted of the acknowledgement of the specific experiences of persons with each different disability. For example, although some Deaf-blind persons in my organization also have psychosocial disabilities, I cannot speak on behalf of persons with psychosocial disabilities. Rather, World Network of Users and Survivors of Psychiatry (WNUSP) does. It also required acknowledging that each person is expert in her/his own disability. So each one needed to explain his/her own specific situation and be respected for that. As it became clear, only by listening carefully to each others’ histories would it be possible to reach agreement. And we all needed to support this person when he/she explained the same thing in the AHC Plenary.

Forms of communication were one such instance. No one else present knew what tactile communication means and how it works. I explained the different means and modes of communication to the IDC. Better still, from time to time there were a few other persons with deafblindness in the AHC sessions, so people could see it and/or experience how slowly tactile communication works. The explanation was reiterated in the AHC Plenary, with the support of all DPOs. Ultimately, the delegation from Uganda insisted on including tactile communication, and it made its way into the final text. I am not sure why it was Uganda that did this, though it may be because I was at that time very much involved in the founding of a national organization of persons with deafblindness in Uganda. I don’t know for sure; I did not ask.

During the process it became important to form alliances in certain areas. Not only did such alliances give a feeling of a stronger voice, but they also offered the possibility to share experiences in advocacy, such as the bad experiences that persons with intellectual and psychosocial disabilities have had living in institutions.

Working with such coalitions required great sensitivity, however. Accessible information and information technology is important for all in many different ways: graphics and pictures or easy-to-read language are acceptable for certain groups, including some persons with deafblindness, but they will not work for Braille users, blind or Deaf-blind. So I needed to support both sides of the issue.
When we started to establish working groups in the IDC on certain topics, we created separate mailing lists. I volunteered to coordinate the group on the right to life. My thought at that time was: “how can we talk about human rights of persons with deafblindness, when they are not even supposed to live?”

My way to convey the message was to start many of the speeches at the AHC with a little poem, showing that I am much more than my deafblindness and barriers. I develop my quality of life by the little hearing I have, but most of all by my fingers, being able to read and write, communicate with other people, being creative in many ways. I had to show, that each person has her/his way of creating quality of life.

During the process, I began to understand that the CRPD is made for persons who are living with a disability, persons who have the right to be a person before the law. The CRPD is a legal document. I am not a lawyer, so I had to learn this. We had very good lawyers in the IDC and I began to understand that Article 12 on legal capacity and supported decision-making was the most crucial article of the whole CRPD. In this context, we had long discussions about persons not being able to speak for themselves, not being able to understand the consequences of legal capacity-even persons in coma. But it increasingly became clear that legal capacity and legal capacity to act as a person before the law, no matter the type of disability, is the basis and turning point of the CRPD. If we did not recognize this, the whole document would only be a document about non-discrimination and accessibility, which once again would consign us to be dependent on the goodwill, the care and the protection of others.

The question, then, was how to make delegates understand the importance of these principles.

During the seventh AHC session in January 2006, Tina Minkowitz and Amita Dhanda (the lawyers of the WNUSP) and I formed a working group to get this message through.

At the beginning, I remember, I started meetings of our little working group with a long explanation about the issue: “We spent the time talking and writing to delegates about our experiences. We now need to realize that we have to change our strategy. Education usually starts where the persons to be educated are and not where we are.” So the way to go about it was to challenge their imagination, as if it all happens to them.

On the last day of the seventh session we circulated the following paper to all delegates:

IMAGINE

Imagine if someone else were making decisions for you. They could decide to take you away, lock you up, not listen to you, give you medication, block you from doing your work and living your life with your body and mind the way they are.

WOULD YOU WANT THIS TO HAPPEN TO YOU?
• Wouldn’t you have the feeling that you have lost your dignity and want it back?
• Wouldn’t you feel your integrity has been violated?
• Wouldn’t you want to have support in making decisions without being taken over and to ask for help without being seen any the less for it?
• Wouldn’t you want to maintain your inherent dignity and be supported to make your own decisions?
• Wouldn’t you want to retain your integrity and continue to be you?
• Would you want a Convention that allows forced interventions and does not respect your inherent dignity as a person?

The principles established in this Convention are universal and will apply to all human beings, as much to you as to me.

Let us make a Convention for a world where we can all grow and develop with mutual support.

IMAGINE A CONVENTION FOR ALL
.... pennpress.org

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