Graphic: The Disability Rights and Independent Living Movement

Joan Leon

Audio transcript: On the three agendas that influenced the formation of the World Institute on Disability
Date: January 22, 1998
Interviewer: Susan O'Hara

Note: Transcripts have been lightly edited; therefore there may be slight discrepancies with audio clips.

After the election, we began to talk about what we were going to do next. You know, I think that none of us had a place to go to or something we really wanted to do. Ed thought that he might transition into some fascinating job with a university or something. But nothing materialized. Judy didn't want to go back to CIL. We began to meet at Ed's house to talk about starting our own organization, and we started to talk about a think tank on the disability movement.

We each had our own agendas. Well, my agenda was that I wanted to have a research center where we could do the kind of research that would enable us to convince people in Congress that it made sense to do the things we wanted. I was totally frustrated with our ability to make any more strides on the basis of what I called "the war stories." I was utterly bored with the war stories.

I must tell you, I was totally surprised that all these personal stories were effective in the ADA. I really didn't expect them to be because—I guess cumulatively they are, but I had seen so many times where the congressional staff persons would just stop listening if all you had were somebody's personal stories. They'd say they'd heard it. They would come back and say, Did you read so-and-so's research study or something. I was just convinced we needed that. But, of course, that was my interest and my background.

Ed wanted to work with disability groups around the world. That was all he wanted to do. That was really his sole interest, or his primary interest. He had such a wonderful time. It was such a head trip for him to go to Japan. He became the most famous disabled person in Japan. He could go anywhere. He wanted opportunities to go, and he wanted to have an organization that would help him develop those.

Judy, I really am not sure what Judy wanted [laughing]. She had many agenda items. Even then, she was very interested in education. I had never any contact with education. In Rehab we didn't do anything in education, so I didn't really know too much about what she was doing. But she really wanted this think tank. She wanted to get disabled people together to talk to one another. That was the way Judy learned. She liked to bring people together and talk.

So we put together these three ideas, which didn't necessarily go together that well, but they were our institute [World Institute on Disability].

End of transcript

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