There have been various events in my life that lead me towards disability as a topic. First, when I was a teenager, I worked in an institution for people with acquired injuries. Then, I worked in an institution for people with impairments acquired at birth, and later on in a specialized clinic for Alzheimer’s Disease. Then, when I studied labor law in Australia in 1998, my professor was a person with a visual impairment, Ron McCallum, I have to emphasize though that his impairment was largely a non-issue. He was to become the Second Chair of the CRPD Committee in Geneva. The third point is that my great-grandfather was killed in Hartheim Euthanasia Centre, the main gas chamber used to murder people with disabilities. Adolf Böhm was a key political figure in Vienna, and the Nazi persecution caused him to have a nervous breakdown, which in turn led to his being robbed of his legal capacity and his subsequent killing.
When I first heard about the Convention, I was to start an internship with the International Service for Human Rights (ISHR), at their New York Office. I was supposed to start on the September 10th, 2004, but my supervisor, Michelle Evans, suggested that I come earlier and attend the 4th Session of the Ad Hoc Committee. When she first handed me a civil society draft, I was pretty appalled by a distinction made between women and men with disabilities, which usually proves counterproductive from a human rights standpoint. I attended the session for a few days and, as the person in charge of covering the event was sick, I was subsequently asked to draft the report. So, in November 2004, I began drafting the report, based on the daily summaries. This is when I really began to appreciate the importance of the negotiations. As a reward, I was offered the opportunity to attend the 5th Session of the Ad Hoc Committee. For the Ad Hoc Committee’s 6th Session, which I attended in full, Rehabilitation International asked me to cover the discussions relating to Inclusive Education. This is when I met Kirsten Young of the Landmine Survivors Network. She made the connection with IDDC and their Austrian member, Light for the World, who were preparing for the Austrian EU Presidency, and therefore looking for someone who was Austrian and had attended earlier sessions of the negotiations.
I started to advocate on the article on international cooperation on behalf of the International Disability and Development Consortium at the 7th Ad Hoc Committee. The effort was led by Mariana Olivera West, who was the Mexican delegate, facilitator on the diplomatic side for what later on became Article 32 – International cooperation. I worked closely with the South Project, where leaders from the South were advocating. They came up with really good and far-reaching ideas about what international cooperation would mean for people with disabilities. I could clearly see the value of these contributions, as there hadn’t been any stand-alone provision on international cooperation in any of the other UN human rights treaties. So, I knew that the negotiations would be tricky and politically charged. Each time I was to argue on something, I had to make sure that we wouldn’t push too far, because we could risk losing everything. Leaders from the South Project seemed to trust me on that, and I was thus more in a lead than a side-counsel position on Article 32. Some of the aspects that were added to Article 11 on Situations of risk and humanitarian emergencies emerged in response to the 2004 Tsunami.
In parallel to my work at the Ad Hoc Committee, I was also working on United Nations mechanisms more generally. This gave me the opportunity to realize that the negotiations were really a sheltered workshop within the United Nations, with very special rules. […] The diplomats that joined the committee were hardworking people, mostly in their early 30ies. The 3rd Session of the Ad Hoc Committee is said to have been a stepping-stone in their careers. Lots of these young people had never worked with civil society at the UN level, let alone met a person with disabilities. They were forced to step down from their pedestals and engage with people with disabilities, and this had a profound impact on how they operated within the Ad Hoc Committee. Once the session was over, they would go back to becoming competitive delegates again. But they managed to switch between these environments very smoothly. It was a very distinct, if not to say special, political atmosphere. If you knew the UN a bit, you could see how things could flare up, even in the Ad Hoc Committee. But this special atmosphere made it possible to smooth things over. Overall coordination of all the contributions was made possible thanks to a lot of trust between certain delegates and civil society members. This trust proved essential. It was noteworthy how strongly this happened.
In February 2007, I was invited by Kirsten Young to a Landmine Conference in Vienna. There, I bumped into Alexandre Cote, who also was attending. As he was organizing a training module in Belgrade (Serbia) as part of the Share-SEE project, he came to me and explained that they were looking for a text that would bring together the suggestions of the International Disability Caucus and a more general human rights background. As he asked me if I could write this text, I started to work on it and covered the first 32 articles – the substantial articles – of the treaty for the training that was taking place in Belgrade. I remember, during the training, Zvonko Shavreskii of Polio-Plus, Macedonia, loudly complained that the text only covered the treaty to Article 32, and asked why other articles and the entire Convention weren’t discussed as well. So, Alex and I decided to add the technical, operational articles and, as a result, address the whole Treaty. Later, Ron McCallum, who had been one of my university teachers, was nominated as a candidate for the CRPD committee. I sent him a couple of texts so that he could get himself acquainted with the treaty, adding the text from the Belgrade workshop. He came back to me saying that this was the best text available on the Convention, and that I should get it published. So, I approached Alex, we gave it another push, and then printed some 200 copies for the Third Conference of State Parties in September 2010. Parts of this text have been translated into Arabic and Russian. Handicap International made a translation into French possible. The Chinese translation is about to be published. After that, I started to go regularly to the UN General Assembly in New York to work for IDDC and Light for the World on Resolutions relating to disability. I ended up drafting the MDG Resolution on disability in 2009. I also participated in the negotiations for the High-level meeting of the General Assembly on disability and development in September 2013. I sat down with diplomats to draft the Resolution for this meeting. I was working on development funding issues, when the CRPD Committee’s funding was brought into question, and I managed to get the then Chair Ron McCallum involved. I believe that together we did quite a bit to secure the Committee’s funding.
Up to this day, I have been steadfastly trying to highlight the great potential that the Convention has to enrich other human rights treaties. I see a lot of potential in some specific aspects, such as for example Article 32 on International cooperation, which is the first of its kind in a UN human rights treaty. Another example is the amazing potential that specifications on mental issues could have with regard to broadening protection measures in that field. As far as civil society involvement is concerned, I don’t think that things could be repeated in such a way any time soon. But for sure, something of the strength and power that arose from the negotiation process will remain as part of its legacy.
The Convention has great potential, but there is something that everybody underestimated, and this is the empowerment of people without disabilities. I really think that people without disabilities need far more than awareness-raising. People are often scared to do the wrong thing, and as a result, they often end up doing nothing at all. If I were to renegotiate the Convention, I would rename Article 8 about Awareness-raising so that it refers to something in relation to empowerment. The idea is to build capacities and bring about change, so that people can feel more comfortable with issues relating to disability. The Convention has to be a lot stronger. There is something else that I am still trying to do, and that is to highlight the potential that the Convention has for other human rights issues – the CRPD adds a lot of nuance and quality. Another challenge that remains is to make sure that the actions undertaken at community level are really in line with the concepts of accessible and inclusive human rights that the Convention promotes.
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