>> Hi, everyone.
My name is Kamilah Martin-Proctor, and I am on the Board of Directors of the World Institute on Disability.
WID is creating a series of videos about our history as one of the first disability policy and research organizations that is actually led by people with disabilities.
I personally live with multiple sclerosis.
And we were able to catch up with two of our founders, Miss Judy Heumann and Joan Leon to talk about what led up to WID’s founding in 1983 and what happened in the years leading up to the passage of the
ADA, the Americans with Disabilities Act in 1990.
And we can’t wait to share all of the incredible stories they told us. Here’s a sneak peak!
>> Judy: Honestly, I don’t remember everything that we did, that would be unfortunately a big lie if I said I did.
>> (audio description) Judy and Joan, a series on WID’s history. Operationalizing inclusion and leading global disability rights since 1983.
>> Judy: You know, there were a number of things aligning at that point.
You had the evolution of the independent living movement.
We started in ’83, you have the ten CILs that were starting like in 1979.
And that movement was talking about the importance of the voices of disabled people and influence and control and policy was a little bit being discussed.
And we knew all the people that were in the independent living movement because we were in the independent living movement.
>> Joan: We came to work in Sacramento as change agents, that’s why Jerry Brown brought Ed in, and that was my understand of what joining Ed was all about.
We were going to continue the work we had started at CIL but on a larger stage.
At the state level and always impacting the federal level.
We were there for two terms of Jerry Brown’s administration.
We accomplished a lot.
In the last year of his administration we decided to bring in our big gun, which was Judy.
>> Judy: I had left the Center for Independent Living and had gone to work briefly for the State Department of Rehabilitation.
>> Joan: We were fighting in rehab with other people at the federal level who kept saying — thought — thinking they knew better than we did about what people with disabilities wanted and needed.
And we just felt that the voice of the disability community was lost.
We decided we wanted to start our own organization.
We wanted — we were thinking of something like a Brookings Institute on disability, as I remember it.
>> Judy: We wanted it to be a disability-led organization like the model of the CILs.
Because while there was a lot of research going on that was being funded by federal agencies, there was nothing that was focusing from a disability perspective.
>> Joan: That was a big priority, you know.
We were going to hire as many people with disabilities as we could, as we could find.
> Judy: As we had money!
>> Joan: Who could do the work.
And we were going to have all kinds — people with all kinds of disabilities and we were going to give them all kinds of reasonable accommodations, and we were going to do the research to enable the voice of people with disabilities to be communicated on all the issues.
We had gone through 504, we knew all of the problems of 504 and what it left out.
We were talking about all the programs that we were intent on developing and we wanted to improve the whole disability benefit system.
It was independent living.
It was international.
>> Judy: You know, even in the name though I remember in the beginning there was a discussion of whether or not we would use the word “World”.
I felt really strongly about using the word “World” because one of our major areas was independent living, personal assistants.
And we had very much been looking and working internationally on it.
And a couple of other areas.
So we adopted using the word “World.”
>> Joan: You know our board chair — our board thought that that was just, just too much.
That we had more than enough to accomplish without putting the world “World” in.
But we were adamant.
Judy indeed was one of the strongest voices.
But Ed had also just recently been awarded his MacArthur grant.
And I think that led him to be more and more interested internationally.
>> Judy: I was also doing a fair amount of traveling, both internationally and domestically with the ADA and I was traveling a fair amount to Europe and to Japan and other places for the work that we were doing.
>> Joan: I was more interested in research, because I knew that we weren’t making any progress at all on the Hill in Washington, because other groups would come in with all this data about disability from their perspective.
And we didn’t have data.
And that told what was really happening with people with disabilities and what people really wanted.
So we had to do our own research.
And to me that was one of the most important — that was the most important part of WID.
>> (audio description) Judy & Joan: More coming soon!
Link to full video: