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Steve Eidelman chapter 3


Chapter 1: Early Career
Chapter 2: Tenure as Director of Mental Retardation Services in Philadelphia
Chapter 3: Growing Self-Advocacy Movement and Roland Johnson (you are here)
Chapter 4: Accomplishments as Director of Mental Retardation Services in Philadelphia
Chapter 5: Tenure as Deputy Secretary of Mental Retardation for PA
Chapter 6: Accomplishments as Deputy Secretary for Mental Retardation for PA
Chapter 7: Kennedy Foundation, National ARC and International Work

transcript - entire interview

Steve Eidelman Interview (Word)

transcript - current chapter

Chapter Three: Growing Self-Advocacy Movement and Roland Johnson

21:57:00:24 - 21:58:46:24 Lisa: Certainly, thinking of what people want and need makes me think of the growing self-advocacy movement in Philadelphia, particularly during your time here. Certainly the efforts of Speaking For Ourselves were pretty extraordinary during this time, and I know that you got to know one self advocate particularly well named Roland Johnson, and I wondered if you could tell me a little about him, maybe describe him for me.

Steve: Yeah, Roland was I think a transformational figure. I think Philadelphia was the first public entity in the United States to fund self advocacy. I mean, we contracted through I think Temple to give Speaking For Ourselves money to monitor people and institutions, and that was in 1984, so before the movement was certainly what it is today. And Roland was this guy who had the ability to sort of communicate at your gut. He didn't talk about himself very much, he talked about people with disabilities and people who were suffering. He had very good support from a guy named Mark Friedman, who knew the balance between supporting and nurturing and controlling, and Mark did not control. He allowed people to do -- to speak their mind and speak their voice. They were a growing influence. You know, there were many people who were very skeptical. Well, these people are retarded, which was the term at the time, how can they possibly -- and some of the people opposed to the institutionalization, some of the people from Voice of the Retarded and those different groups, were just dismissive of them. And I think Roland showed us that people with an intellectual disability could lead, and could lead without being someone pulling their strings, could lead from the heart, and could again articulate in a very clear way why things had to change.

21:58:47:05 - 22:00:28:07 Lisa: Do you remember the first time you met him?

Steve: No, I remember the last time I met him, I mean the last time I saw him. He came to my office with Mark, and he was diagnosed HIV positive, and he came -- he wanted to tell me in person, and we had this whole conversation, and I think that was probably the last time I saw him. I think one of the -- I do remember -- my son is 25 years old, and I remember sitting at what was the Marriott on City Avenue, but it was technically in Montgomery County, and there was a Speaking For Ourselves conference, and there were 400 or 500 people in the audience, and I was speaking with Bob Perske, and then I was going to leave that conference and go pick up my wife and son at the hospital. My son had just been born, and bring them home, and I couldn't miss the conference, so they literally postponed bringing them home from the morning to the afternoon -- yeah, that was an interesting time. But I showed up in -- it was a Saturday morning, so I was wearing a pair of khakis and a sports shirt, and I think I had a sports jacket on, and because there was going to be a dance that afternoon, the people in the audience were dressed to the nines, and I remember leaning over -- and Roland was on the dais with us -- and I remember leaning over to Bob Perske and saying, you know, I bet you half the people in the audience here have a behavior plan. And people were sitting, paying attention. I had spoken at many professional conferences, and the audience was sort of better behaved than they were at an AAMR -- I think it was AAMD at the time conference, so --

22:00:30:20 - 22:01:08:02 Lisa: What was your personal relationship like with Roland?

Steve: I think we were friends. There are other people who are much closer to him than I, but I liked the guy. He was just a fascinating man, and he sort of emblazoned in my brain that we were working for him, and for people like him. He had that ability -- again, because he almost never talked about himself. There are many people who are leaders of movements who are very self-centered, not just self-advocates, and Roland was not self-centered. I think he was very outwardly focused on what could be called his constituents; he really felt for the people.

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