An Interview with Diana Samarasan, Disability Rights Fund
By Beverly Bell
Diana Samarasan is founder and director of the Disability Rights Fund, a path-breaking advocacy and grantmaking organization. The Fund’s motto is “Building community capacity to achieve the human rights of all persons with disabilities.”
“Nothing about us without us” is the global slogan for the disability rights movement. It means that nothing should be decided about people with disabilities without their presence, their participation, and their inclusion.
The disability rights movement has been evolving for a long time, but in the US, it really gained momentum from the civil rights movement. There were people with disabilities who used the tactics of the civil rights movement: sit-ins, protests, and marches to bring disability rights to everyone’s attention. Eventually, that led to the Americans with Disabilities Act [passed in 1990].
Globally, there is a relatively new international human rights treaty, the Convention on the Rights of Persons with Disabilities [CRPD, passed in 2006]. The process of negotiating the treaty at the UN — only three years, short as treaties go — was unique. Never before, when treaties were drafted, had there been so many civil society representatives participating in the actual drafting of the treaty text. One-third of the seats in the working group that drafted the treaty were reserved for people with disabilities. That process brought together people with disabilities from around the world and from different impairment groups: deaf people, blind people, people with intellectual disabilities, people with psychosocial disabilities, people with physical disabilities, little people. For the first time, they had a platform and a target for joint advocacy.
Like any resource-poor movement, the disability rights movement prior to the convention was disjointed. There were blind people negotiating for their rights or services, there were people with physical disabilities negotiating for their rights or services. There was not a way to talk about rights across the spectrum of disability. Of course, people with disabilities are heterogeneous, and there are hierarchies in the movement just as in other movements. What the treaty has done is put a common language to the rights deprivations that people with disabilities face.
The development of an International Disability Caucus to negotiate the wording of the treaty helped to build a movement that is now international. Out of the Caucus evolved the International Disability Alliance [IDA], comprised of membership organizations like the World Blind Union, World Federation of the Deaf, World Network of Users and Survivors of Psychiatry, the International Federation of Hard of Hearing, and also regional networks of organizations, like the Arab Organization of People with Disabilities and the Latin American Disabled Person Organization. IDA now has a secretariat in New York and in Geneva, which negotiates not only with the Committee on the Convention on the Rights of Persons with Disabilities, but all of the treaty bodies and the universal periodic review, and all of the UN development organizations for inclusion of people of disabilities. They help organizations at national levels present alternative reports to the UN, and be present during the review processes and during development negotiations. It’s really a huge step forward from where things were just a few years back.
Many innovations in human rights are in the treaty. The convention demands that all state parties to the Convention have legal protections for rights of persons with disabilities. Prior to the convention, among the member states of the UN, there were maybe 45 that had any national law that addressed people with disabilities. The Convention is also the only international human rights treaty that establishes national, in addition to international, monitoring mechanisms. This brings the treaty much closer to home, to people on the ground. Because they don’t have to only go to Geneva, they can go to national human rights institutions and national focal points on the treaty within their own countries. The more that people with disabilities know about the treaty, the more able they are to demand that their governments implement the rights within it.