Diana Samarasan is founder and director of the Disability Rights Fund, a path-breaking advocacy and grant-making 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.
Especially in the developing world, people are using the Convention as both an international human rights and development instrument to gain access to rights, and as a platform for coming together to demand inclusion. Those states that have ratified the convention now have to report to the UN, and civil society can report as well. And the states can say, "Well, we did this, that, and the other," and civil society can say, "Well, actually, no, you didn't." And this is what's happening. Coalitions of organizations of people with disabilities in various countries are working together to write alternative reports to monitor abuses of rights, and to craft reports to present in Geneva.
As outlined in the Convention, "disability" is not something that is within an individual, it's the interaction between a person who has an impairment and attitudinal, social, and environmental barriers. What this means is that society must shoulder the burden for inclusion. If there were accessible buildings, streets, public services, transport, employers and schools everywhere, people in wheelchairs wouldn't have a "disability." Currently, people with disabilities are still struggling for full recognition as humans. In Tanzania and Uganda, Albinos are hunted for their body parts, because they are not thought to be part of the human race. They are thought to be ghosts, and their body parts are used in traditional medicine. In Uganda, little people report that they weren't allowed to enter post-primary education because they were too short. The directors of schools said, "Well, you're so short you can't possibly be the right age to enter."
The organizations we've funded [at the Disability Rights Fund] have been able to make themselves known in the media and at governmental levels, and have advocated so that they can access school, participate in elections, be voted into office, access services, have the right to life, and that's huge, that's huge.
Now, within the disability movement, there are hierarchies that have to be addressed. Urban, educated men with physical disabilities and blind men are the ones on top and everybody else falls underneath. Some of the grantmaking that we're doing addresses the need to diversify the movement, the need to bring in new voices, the need to hear from the grassroots, the need to hear from the very marginalized sectors. We give grants to raise the voices of women and youth with the disabilities. And to start to break down membership guidelines for umbrella organizations at the national level which don't allow Albinos or little people to be members of organizations, because they don't recognize them as people with disabilities, and because they don't want to share the small power they have, frankly.
For example, in Peru, we've funded groups of people with psychosocial disabilities and people with intellectual disabilities. Both have worked very hard to see that their rights are recognized in national laws and in national disability movements. Before the 2011 elections in Peru, the electoral commission removed over 23,000 people with psychosocial disabilities and intellectual disabilities from the voter registry. There was an amazing campaign, led in part by a young woman with intellectual disabilities who went to vote and found that she couldn't. She challenged this at the legal level. She also came to New York and spoke at the United Nations, very poignantly, stating: "I am a person too, I have political views, I have the right to vote." She, and many Peruvians behind her, including in the larger disability movement, were able eventually to reverse the removal.
Unfortunately, disability rights is new, even to longstanding human rights organizations, human rights donors, and development organizations. People with disabilities haven't been considered as part of "human" in human rights. What is needed is for people to start thinking about all of the people they know who have disabilities, because all of us have colleagues or friends or family members with disabilities. It is not an uncommon issue: there are one billion people with disabilities around the world, that's one in every seven people. They are women; they are children; they're farmers; they're lesbian, gay, bi-sexual, transgender; they're workers. They have the same rights as everyone else. And they have the same trouble in winning those rights as many others.
Many thanks to Megan Feifer for transcribing this interview.