How and why did you find yourself working in the disability rights movement?
My first steps with Handicap International were in the field of social development, focusing on partnerships and support to civil society organisations. My involvement in the disability rights movement truly began when I left for the Balkans, where I held several positions before becoming Programme director. It is in the Balkans that the “Share-See” project was created, in partnership with Disabled People’s Organisations, including the Center for Independent Living Serbia, Polio-Plus Macedonia and the Association of disabled students of Serbia and Montenegro. All these organisations were very focused on the “rights-based” approach, and had a somewhat radical vision of disability. As a result, the Share-See project became an emblem of this rights-based approach, because of its avant-garde nature and its different working methodology. The Disabled People’s Organisations (DPOs) that were part of the Share-See project could choose to participate or not to participate in training programmes. The approach was horizontal: workshops were offered by DPOs for DPOs. HI was not the sole project steward; somewhat like a board of trustees, each organisation had equal weight in the decision-making process; and this facilitated exceptional project leadership by the DPOs. Working with these DPOs convinced me of the appropriateness and importance of a rights-based approach. At the time, the rights-based approach contrasted quite sharply with the prevailing approach within Handicap International, which, in the ‘French doctor’ spirit, was imprinted by the humanitarian context and mainly focused on actions such as rehabilitation.
How did the opportunity to participate in the Convention drafting process arise for you?
To begin with, the Balkans Programme financed the participation of a Serbian leader, so that he might join his country’s delegation. He was one of the first persons with disabilities to be included in the delegations. Then, the Programme partners strongly encouraged me to go to New York to participate in the process, in Handicap International’s name. Philippe was also in New York, and we made an agreement there: as he had no specific budget to support the drafting of the Convention, we decided to send Balkans Programme staff to the negotiation process. From the 4th session onwards, first Lisa Adams, and then Ana Perrenoud, provided secretarial support to the International Disability Caucus. I suggested this because I had noticed that the Caucus’ communication lacked cohesiveness, and sometimes seemed to head off in different directions. And, the Chief Negotiator had asked to only have to consider a single Caucus voice. So, the drafting of a bulletin that put the IDC’s proposals on the agenda greatly contributed to structuring civil society’s contributions into one single voice. The fact that Handicap International sought to serve in a supportive position brought legitimacy to our action, in a context in which Disabled People’s Organisations initially had some resistance towards humanitarian organisations. However, in parallel, we were also drawn into coordinating efforts on specific articles, such as Article 28 on social protection. Indeed, on the one hand, Northern NGOs were somewhat reluctant to tackle the subject of social welfare, which they felt was too connected to the charity model of disability; while on the other hand, the southern NGOs were relatively unaware of the subject. This is what led us to take a leadership position in the related discussions. We also participated in the efforts on Articles 11 and 32, not to mention projet Sud. Overall, I think we had a significant influence, that we nonetheless never sought to impose, as our support was provided in a somewhat informal way.
Reflecting back, what is your analysis of this participation in the drafting process?
Because the Share-See project took place between 2003 and 2007, connections were made with the Convention’s drafting process. The two trajectories were parallel, and mutually sustained and enriched each other. On the one hand, our participation in the IDC secretariat was made possible by the Share-See programme budgets. On the other hand, everything that was learned in the negotiations was reinjected into the programme in order to strengthen the voice of persons with disabilities. In this way, our participation in the Convention’s negotiation process transformed the programme. At one time or another, all the Share-see project partners went to New York. For all those involved, it was like a master class, which enabled everyone to learn from the most eminent specialists. Very strong ties were formed at this time. One could almost speak of brother/sisterhood or, at least, of a generation that was trained in the negotiation process. This generation included Damjan Tatic, now a member of the Committee on the Rights of Persons with Disabilities; Vladimir Cuk, at the time director of the Association of disabled students of Serbia and Montenegro and now president of IDA. Similarly, we recently witnessed the emergence of a generation with the development of the Sustainable Development Goals (SDGs). So, there was a handing over of the flame of sorts, with this new generation, who came back to the CRPD to make the SDGs inclusive. All this work enabled the development world to reclaim the Convention.
What has changed in the 10 years since the Convention’s adoption?
In the last 10 years, the Convention has already turned the tables in the way disability is taken into account politically. Today, consideration of disability no longer depends upon the goodwill of political leaders, it has become mandatory. The Convention establishes an accountability mechanism, which operates just like a contract. It is, above all, a contract between States. However, it is also a contract between citizens and States, and this has greatly changed the parameters of the dialogue between States and civil society. In addition, the everyday United Nations’ authentication processes and the presence of a Commission in Geneva that reviews the States’ actions have influenced the way people perceive themselves in relation to their environment and the community. This has enabled notions such as non-discrimination, accessibility, dignity, self-determination and empowerment to be given their full meaning. Many times, during trainings programmes that I have led, I have noticed a shift in participants, like a light coming on, a sign of a change in awareness. The Convention gives persons with disabilities the power to claim the exercise of their rights. This is a major change, in contrast to a situation in which the consideration of disability seemed much more akin to a favour. For those of us who do not experience exclusion daily, this is doubtless a change whose impact we have difficulty imagining. Finally, the Convention is also an international frame of reference for devising disability laws at the national level.