Ed Skarnulis Interviews Rosemary and Gunnar Dybwad

Self-Advocates on the March

Produced in 1987 (Run time 3:59)

Ed Skarnulis: Parents are sometimes intimated by professionals and how some of them are able to overcome that, and you've alluded to that. And so what I'd like to ask you instead is about another movement other than the parent movement.

I saw a picture not too long ago that Gunnar sent me of you marching down the street with a banner twice your size, I think, and you were with some self-advocates, some people with developmental disabilities who were trying to make the point that they wanted their rights and their own recognition. Could you describe that movement and give us some insight into that?

Dr. Rosemary Dybwad: Oh, that was a great day. It was... We were marching from the gates of the institution into the town where we were having a meeting on the common in western Massachusetts. And a lot of the people in the procession had been residents in the institution. It was a great day.

But the whole self-advocacy movement goes back, oh, it's almost 20 years now since Bengt Nirje in Sweden realized the importance of what self-advocacy could do for people, began to have small groups of mentally retarded young people meeting together, perhaps with some college students who were interested in the whole field, and his... the brilliance that he showed was that he realized that they could speak for themselves.

If given a chance, given an opportunity, they could think and they could really express their own needs. That was the beginning. It spread from Sweden to England where they began to have a few small conferences, to Canada, to the United States, so that now – nobody has any numbers – but I think that in every state there must be a group who are beginning to help us learn from them what the real answers should be.

Dr. Gunnar Dybwad: There's a very interesting historical aspect to this. One of the very early propaganda leaflets of the National Association for Retarded Children, as it was still called in those days – and that's important in connection with what I have to say – it was entitled We Speak for Them.

And it was a real true feeling of the parents that nobody but they were interested and ready to speak for their children. But, you see, what faces the parents today is that these children and young people are learning to speak for themselves.

And the parents have to learn, they have to learn to listen. And that is difficult because it was... they were so convinced of their responsibility to be the spokespeople, that for them now to realize that these young people have minds of their own, be it limited – we are all limited compared with some other people – but they can speak up.

And so they are a challenge, and not in any negative sense, but they are challenged with the very movement whose horizon is suddenly being widened by opinions which they didn't expect to hear from their offspring.

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