Graphic: The Disability Rights and Independent Living Movement

Doreen Pam Steneberg

Audio transcript: On daughter’s disability, the Disability Law Resource Center, and advocating for disabled children’s rights
Date: January 26, 1999
Interviewer: Julie Drucker

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

She was born in 1970. She was immediately placed in this, as I said, treatment center, which she went to daily. I went there a lot of the time and helped and volunteered.

Even as a baby, as a toddler?

Yes, as a baby. She was, when she first went there, just over a year old. It was very hard to do that, but it was necessary, I felt. Pre-school-wise, and from one till one and a half to two, she went daily to the day program. I was introduced to other parents, and very quickly, being a nurturing type and also a nurse, I tried very quickly to help other folks deal with their children's problems, too. So we kind of came together in a way which developed into a very long-lasting peer group, in which we gave each other support, and we did various trainings or conferences for finding out what was the best treatment, and where to go, and all of the resources that were necessary to help our children.

Was that how you first were introduced to DREDF [Disability Rights Education and Defense Fund]?

It wasn't DREDF in those days. It was started as a different entity under the Center for Independent Living, and it was called the Disability Law Resource Center [DLRC]. It was across the road from CIL [Center for Independent Living], in a building, but it was put together by them. When we first went there—because we felt our children did have rights, and we needed to find out what they were and learn about them—the director that we talked to first of all felt our cause was very just and felt that this was a beginning for her. Then the attorney we talked to also felt that this is where we should start, putting this new law [Education for All Handicapped Children Act, 1975] in place.

It happened to be Arlene Mayerson, and then we talked with Judy Landau, both of whom are now attorneys in disability law. We then talked with Judith Heumann, who was the director of this center, the Center for Independent Living. She was very adamant that we should be given service from them, which we did. We joined in with them and even though we didn't feel part in the beginning, because we felt that, I think, a lot of people resented us being there because we were parents.

At that time, they all didn't feel very good about their own parents, because they felt they had to work this out. They felt we were interfering in their world and that their parents didn't do right by them by shutting them away in little schools and hiding them away in their houses and not really letting them live normal lives and go to school like everybody else.

But you were fighting for your children to have a normal life, to be totally integrated.

Yes, that's exactly what we were fighting for. That's what we wanted because we believed in it. We didn't think our children should be treated any differently because they were disabled; they needed to be exposed to the world, just like everybody else.

End of transcript

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