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Mark Friedman, PhD chapter 1


Chapter 1: Early Career (you are here)
Chapter 2: Origins of Speaking for Ourselves in Pennsylvania
Chapter 3: Speaking for Ourselves and Advocacy Efforts
Chapter 4: Speaking for Ourselves Connects to National Disability Movement
Chapter 5: Future of Self-Advocacy

transcript - entire interview

Mark Friedman, PhD Interview (Word)

transcript - current chapter

Chapter 1: Early Career

06:36:22:13 - 06:36:53:00 Lisa: My name is Lisa Sonneborn. Pleased to be interviewing Mark Friedman at Temple University in Philadelphia, Pennsylvania on January 20th 2012. And also present are videographers Lindsay Martin and Aggie Ibrahimi Bazaz, and Mark do we have your permission to begin the interview?

Mark: Yes.

Lisa: Thank you. And I wondered if you could tell me where you were born and in what year.

Mark: I was born in Westover Air Force Base, Massachusetts in 1951.

06:36:54:04 - 06:37:41:17 Lisa: Mark, we're gonna begin by asking you if you can describe the kind of work you do.

Mark: I do advocacy for people with disabilities in a number of capacities and a number of projects. I'm currently doing as a consultant on several projects. I'm working in New Jersey helping people get out of three different state institutions. Vineland is one of the grand daddies of them all and we started self advocacy groups in the institutions and work with people monthly, to help them get out. One of them is a sexual offenders program. And I live in Nashville, Tennessee and I've done advocacy there and I have a project here in Philadelphia I'm doing and I just started one in Michigan so I'm traveling a lot these days.

06:38:00:06 - 06:38:53:11 Lisa: I'm wondering was it always your intent to work in support of people with disabilities?

Mark: No, I kind of fell into it. I was actually doing, building furniture and having kind of a different life and I was bored and wanted to do some more human service work. And I was looking for work and had gone to, was sent by somebody recommending that I went to see Robert Audette the original special master in the Pennhurst court case and I heard him speak and I was so moved by his words that I went to see him and ask him for a job.

Lisa: You had mentioned Robert Audette

Mark: Right.

Lisa: and that the words he had said had moved you. What did he say? Can you recall?

Mark: Um, it was the notion what was unique about Pennhurst was that everybody was going to be leaving. People were not going to other institutions. And the idea that it was being done consciously and that across the board, no matter how disabled, everybody's gonna be getting services and help. And also it was a federal court. I've always been interested in the law and lawsuits and civil rights, I guess more to the point, and how the law affected the rights of people and here right in my home town was this major, major piece that I hadn't paid much attention to 'til I went to hear him and also the timing, they were right in the implementation of it so it was like right at the cusp of action.

06:40:10:26 -06:40:52:28 Lisa: Was working with a special master and in the office your first experience working with a disability community.

Mark: I'd worked previously in a - with people coming out of [ph] Byberry in a sort of day care program and actually running woodshops, I was doing woodworking with people. These are people who had been dumped in the community, the whole typical mental health thing and that lived in a community for five or ten years but they're all in boarding homes, and it was really tragic how people had been, you know, gotten so few services and they would come to this center just for day time, but often they just came for the meal and to hang around.

06:40:58:22 - 06:41:22:19 Lisa: Had you ever known or met a person with a disability before you began working with this community?

Mark: Interestingly, no. So many people who've worked in this field come out of that but I'd really done none of it and I just kind of fell into and had a lot of, I guess, sensitivity but you know, I'd really never worked with anybody with disabilities before.

06:41:23:14 - 06:43:37:22 Lisa: So can you tell me a little bit about what you were doing in the Special Master's office?

Mark: Well, I was just, I recently remembered my, the position when I went to see Robert Audette was he turned around and said they had two PhD internships which one was filled by a person who ended up working here at Temple and I was just about to start a masters degree, part of getting more involved in human services. And he said he'd be willing to count the masters degree as that slot and give me that slot if that worked out. So I started part time. It was just kind of doing grunt work and then I was successful, or people perceived me as successful, and I got really involved in how the law shaped policy and shaped people's lives and I got very involved in - I became the organizer for all of the special masters around the country. I became very enamored and I read every journal article there was to read about special masters and disabilities and law cases and how that worked. 'cause there wasn't much, I ended up calling them. I was just kind of a young whipper snapper, didn't know nothin' and I called them and talked to a number of people and somehow out of that came the idea that it'd be useful for people to come together and so we put in the first ever - eventually it became the Association of Court Monitors of the country. It is now, you know, a pretty prestigious organization. We held the first conference in Princeton, New Jersey probably in, I guess about 1980 or something. So that kind of got me really involved in you know, the background and how it worked and what it did. The job I came to do was called a county liaison. I worked with two counties on the implementation and just kind of facilitating, greasing, and identifying problems and problem solving and keeping pressure on county government too, 'cause they were the implementors, they were the people who were responsible for moving people out.

06:43:38:25 - 06:44:31:07 Lisa: When we were talking before you described your role there as a motivator and an agitator. Can you tell me a little bit about what it means to be a motivator and an agitator?

Mark: Well I was working on two levels, I think. I was working directly with the case managers, kind of what we would call support coordinators today. And I was working directly with the county administrator so I would think of motivating the case managers and agitating the county administrator. I would go in with these long charts I had of where people were in the moving process and engage the county administrator and what are you doing here or there? And it would agitate them greatly.

Lisa: Which do you think was more successful, the motivation or the agitation?

Mark: Both. Both. I think often the county administrator would motivate his staff to do things.

06:44:34:07 - 06:46:46:14 Lisa: As part of your role you were involved in public hearings, I believe.

Mark: Yes.

Lisa: Regarding the closure of Pennhurst and the transition of people with disabilities to the community and during those hearing families certainly gave voice to their concerns about their family member moving from an institutional setting into the community. Do you remember what those concerns were or what they were afraid of?

Mark: They really were the same things that you hear today. I think the number one concern across the board just almost always is what's gonna happen to my son or daughter after I'm no longer here? I'm working now in New Lisbon and New Jersey and the family members say the same thing. They say it on TV they say it to the legislators. People felt that they didn't know what to do. They got their son or daughter in the institution and they felt it was a permanent placement, like that problem was solved. It really wasn't solved then and I think that the - one of my big peeves is I think that the government really lied to people. I think the notion that what parents will say is that I was told, you know, they would be safe forever and I could relax and rest and that's simply not true. It wasn't true then either. People thought it was. People's experience was alike 'cause people did stay there for twenty, thirty, forty, fifty years. But governments never really made a commitment to people. There's never really been any guarantee. There's many, many cases where it became the governments advantage to for example to have that land and they'd move a whole institution and sell the land and all the people in the institution would be moved. And many examples, but the governments never really been committed to the security and safety of people. So people bought into that, families, and so they perceived the court order as being the problem and they perceived me as being the instigator, agitator, and troublemaker.

06:46:47:29 - 06:47:09:22 Lisa: Were there people with disabilities present at those public hearings?

Mark: Not in those days. Self advocacy hadn't come along and it was very rare, extremely rare for people with disabilities to have any role at all. One of the unusual aspects of the Pennhurst court case was that there actually were people from Pennhurst that testified in the actual trial.

Mark: You asked the question were people with disabilities involved? And one of the really interesting elements was that frequently people in opposition in institutions would actually bring somebody with disabilities, probably one person in the entire institution would say I want to stay here. And they would gain prominence and they would be, you know, come to hearings or they would be in a paper and there would be somebody's most articulate and they would go, you know, I want to stay here and you're violating my choice and my rights and all these things. So that was pretty, probably the most often, frequent role that someone with disabilities got to play was saying I want to stay here.

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