Human Rights and Disability Advocacy

2. Our Lives, Our Voices: People with Intellectual Disabilities and Their Families

CHAPTER 2 Our Lives, Our Voices: People with Intellectual Disabilities and Their Families Anna MacQuarrie and Connie Laurin-Bowie “This Convention can’t just be about those of us here today. It has to be meaningful for the people who aren’t in the room; to my friends who aren’t always seen or heard by others because they don’t communicate in the same way as us here. It has to protect their rights and speak about their lives as well.” Robert Martin, a member of Inclusion International’s Council and a selfadvocate from New Zealand, first spoke these words in the very early stages of work on the Convention on the Rights of Persons with Disabilities. For people with intellectual disabilities and their families, the challenge of the Convention was and is to have state parties and other groups recognize that the Convention includes and must protect the rights of people who cannot always speak for themselves. People with intellectual disabilities are among the most excluded groups in every society. Of the estimated 130 million people around the world with an intellectual disability, the vast majority live in poverty and experience exclusion and isolation; there is little to no support available to them or their families; less than 5 percent in developing countries are receiving any form of education; and it is estimated that about 26 million live on less than a dollar a day. Even among other disability groups there is little understanding of the issues and perspectives of people with intellectual disabilities and the role families play in supporting individuals to claim their human rights. Inclusion International’s challenge in negotiating the Convention was ensuring that the voices of people with intellectual disabilities and their families were heard and that their particular perspective of inclusion was 26 Anna MacQuarrie and Connie Laurin-Bowie reflected in the text. For people with intellectual disabilities inclusion requires more than a simple adaptation, accommodation, or device. While many people with disabilities may participate and be included in their school, community , or workplace when provided with a ramp or other adaptation, for people with intellectual disabilities real inclusion requires that classrooms, workplaces, communities, and societies are organized in ways that enable their participation. For the Convention to be inclusive it had to reflect this approach, providing the right to accommodation while also creating an obligation on societies to change the way they are organized. The development of the CRPD was an opportunity to entrench a progressive rights-based approach that respected this broad approach to inclusion and to develop an aspirational document with a vision for future generations, one that would stand the test of time and point the way toward progress. Anything less risked inadvertently institutionalizing the status quo. For Inclusion International this meant finding ways to ensure that the CRPD would be a relevant tool for its members all over the world that would recognize the very different legal, cultural, political, and economic context of member states but could simultaneously be used anywhere in the world to promote inclusion. Inclusion International was represented in the negotiation process by its council members, families, self-advocates, and experts from its member organizations . Inclusion International was present at all major CRPD events from the Working Group meeting through all the sessions and the signing ceremony. Additionally, it was an active participant in the International Disability Caucus forum. Developing the CRPD was not an easy process. The negotiations of the CRPD brought the world together to talk about disability. With that came stereotypes, assumptions, and outdated language use about disability—and not just from government delegations. While it was not unexpected that there would be tensions and differences between government delegations and civil society representatives, the tensions and differences among and within civil society organizations were, in many ways, more difficult and more important to overcome. It does not detract from the CRPD’s status as a landmark achievement for disability rights to acknowledge that the negotiation process was fraught with differing ideology, differing priorities and tactics, and differing perspectives. This chapter will tell the story of how Inclusion International sought to influence the formulation of the CRPD on behalf of people with intellectual Our Lives, Our Voices 27 disabilities and their families while balancing the different perspectives of its members around the world, building consensus with other disability groups, and prioritizing key issues that were important to its membership. Background Inclusion International is a global federation of family-based organizations advocating for...