Interview

“People see in me the willingness to fight for what I believe in:” Judith Heumann

Judith Heumann is a well known American disability rights activist. Heumann was among those who pioneered modern legislation recognising that the U.S. Constitution guarantees equality of access and opportunity to persons with disabilities. She co-founded World Institute on Disability. She also served in the Clinton Administration as Assistant Secretary of the Office of Special Education and Rehabilitation Services at the U.S. Department of Education. Further, she was appointed the World Bank’s first full-time Advisor on Disability and Development in 2002. She is now lead Consultant, Global Partnership for Disability and Development (G.P.D.D.). Heumann was in Delhi for the G.P.D.D. meet and here she shares her views and experiences with Chitra S. Shankar.

1. As a forerunner of the disability movement in the U.S., you are known for your strong belief in the philosophy ‘nothing about us without us’. How do you exercise this in your personal and professional life?

My purpose in life is to be vigilant and always try to be as strong as I can be. There are lots of challenges both as a disabled person and as a woman. Being able to maintain that vigilance necessitates having a good network of friends who are politically committed, are knowledgeable and have similar vision about the world in which we live.

It’s the way you have to live your life – trying to be vigilant and true to your beliefs. For instance, when I arrived, I found that the Ashoka Hotel had no accessible bathrooms. Now there are. I worked strongly with the Government and got it done. Little things are as important as big things. Small things that frequently concern you affect other people too. For me it is living the ideology. I feel that if you relax and let one thing go, you let other things go. It is about being inclusive and listening to people sharing diverse experiences. People need to be empowered and each individual needs to feel that they can benefit from this.

2. How do you view the American disability movement today as compared to the 60s?

The movement has grown. It was started with a small group of people with a fighting spirit trying to fight major problems – mainly on discrimination and adverse effects. In the late 60s and 70s, as the movement was developing and emerging, we were a group of desperate people with different backgrounds coming together, which was a problem. We did not know each other. But over the years, we are developing people who are knowledgeable, telling them how to work in various areas such as education, transport, etc.

We in the U.S. change with development organisations, etc., and some of the laws have very powerful effect – especially Access laws. We continue to face challenges. Some of the court decisions have been bad. There is need for participating continuously in legislations to ensure that we maintain and strengthen our position within governments and there is the issue of financing, and the issue of whether people are losing benefits. But we have to be strategic because there are more conservative courts. Disabled people find it difficult to find jobs. Discrimination is part of it. People find problems getting support on their jobs. Employment is a major issue because education is getting better. Disabled children are in schools but not all are integrated and there is a high rate of dropouts.

The movement is continuing to grow but majority of the disabled people are not part of it. Disability is so varied and many people acquire disability late in life. So it is not a single group. But you have to find ways of finding people including those with invisible disabilities.

3. Do you think that there are more tools and techniques available now as compared to the 60s?

The issue of working cross-disability for most things is a powerful tool. As a cross-disability movement, we achieved more changes in legislation than when we came in groups. As people are educated and have more knowledge we are able to effectively negotiate better. People are in a position of authority and can make policy and implement it. More disabled people are being elected to government positions. Disabled people are seen more on the streets than before, because infrastructure is more accessible and they are becoming part of the mainstream than before. In schools they are meeting peers. So we need to focus on youth so they do not get isolated. Parents and disabled people are getting more involved together.

4. What role does the U.S. play in the international disability rights movement?

It is very unfortunate that the U.S. plays a limited role in the international arena. Maybe because the country is so large and people are less knowledgeable and engaged in international issues. It is something some of us are working on. And it is slowly changing.

5. As a champion of rights for disabled people, you have done a lot over the years. What are the contributions you feel have had the maximum impact?

From the first lawsuit I filed when denied a job to any work on legislation, it is not the issue of the individual act but the collective effort. People see in me the willingness to fight for what I believe in. The fact that I am a fighter is important.

My vision is also to work with civil society to try and bring about greater knowledge and understanding and collaboration.

6. What is the role of multilateral agencies like the World Bank in the area of disability?

They are struggling. They are also trying. The World Bank is trying and they are now doing good work, but others are resisting it. In all agencies, if you can sit and talk to someone in policy, in an analytical way, we can easily break bread. When even mainstream people are not going to schools, why would many of these institutions look at the disabled. There is a need for disabled people in all these institutions working on policy.

Some of the positive things like G.P.D.D. is that it is a promising activity because it is bringing together a broad group of entities working on disability, looking at it from the human rights and equal rights perspective and not the medical model.

7. What brings you to India?

The Global Partnership for Disability and Development (G.P.D.D.) meet.

8. What is the significance of G.P.D.D. vis-ŕ-vis the disabled population and how does it impact at the international level?

The G.P.D.D. is trying to bring together diverse groups, to talk about inclusive development and to learn how to work together. A large number of individuals are doing lots of work in the area of disability. They are slowly integrating development with their work.

9. You have been in India for a few days now. What has been your experience?

I could not get out of the hotel because there are no curb cuts on the streets. There is no accessible transportation. In 2003, I was in India. I do not see a lot of change.

10. The U.N. Convention on the rights of persons with disabilities was adopted on 25 August 2006. What is your opinion and when do you think it will be ratified?

It is monumental. It is one of the biggest achievements internationally, with a good document created with disabled people’s voices heard. It will be ratified. Maybe in a year. The issue is to get governments to do what needs to be done.