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Visionary Voices
Interview with Mark Friedman
January 20, 2012
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
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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?
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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?
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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
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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.
Chapter 2: Origins of Speaking for Ourselves in Pennsylvania
06:48:16:26 – 06:50:17:21
Lisa: I believe in 1974 you saw a film called People First. Was that about that time?
Mark: Yes. I was working for the special master and one day, this would’ve been about probably 1979,
we had ongoing staff meeting and there were sort of educational component and so we’re all gathered
in a room at a conference table and they showed a film. And the film was called People First. And it was
kind of a kooky film. But it showed the first People First group which was formed in Oregon in about
1974 and the film was about the conference that they had. It showed people coming to conference and
people speaking up and I was just extraordinarily moved to being teary eyed by that film and a notion
that people who were perceived to be voiceless could gain a voice and the people could be organizing
and could be in charge of having their own conference. What startled me later was that later I realized it
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didn’t really affect anybody else in the room. You know, it was like a personal message to Mark in a way.
But I was very moved by that and I then went on to help start a similar group like that in Pennsylvania
which eventually after several steps became Speaking for Ourselves which became the statewide self
advocacy organization. But it was that movie that really motivate. And I have over the years, I’ve actually
met two, my counterpart state coordinators and other states in self advocacy who actually saw that
movie and had - it was an instigator to their work.
06:50:18:25 – 06:51:13:20
Lisa: So the idea of self advocacy was new to Pennsylvania in 1979?
Mark: Yeah, there was none. There was none. It was in about three, four, five states around the country
but it did not exist in Pennsylvania. And I thought at the time, actually I was shocked, I was like well why
wouldn’t this be here? Pennsylvania’s the state where - at the time it was - the development of what
were called community living arrangements was perceived to be really pretty much cutting edge for the
whole country. They had not only built upon others, Pennsylvania almost across the board had smaller
numbers of people in programs and a number of ways they were perceived nationally and so it was like,
well how could they be doing all these things and there wouldn’t be any self advocacy? It took me years
to understand why that was.
06:51:14:25 – 06:52:34:17
Lisa: And why do you think that was?
Mark: I think it was the - I think it was almost a given. It was by definition that people would resist it
because there was such a well developed advocacy and families and providers that people really would
resist the notion that the people themselves. Rather than, almost in a state like Oregon where there
wasn’t anywhere near the services that existed. People could rise up and come to the four much easier.
But I think that the professionalization and the many ways professionals set up advocacy and the strong
role that families played, you know, there wasn’t a vacuum here and it was a strong stance that is a real
barrier. It was a real barrier. I think unconscious but it was a real barrier that in essence people had to
get out of the way to allow people themselves to come and have a role. And they were very not open to
stepping aside or come be with us. They didn’t see it in their self interest as - many states, they would
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see a self interest to let’s have people with disabilities advocate with us. And so it was a tough nut to
crack.
06:52:35:00 – 06:57:52:08
Lisa: So, a tough nut but yet you decided to try to bring that concept to Pennsylvania?
Mark: I didn’t know nothin’. Fortunately I had no idea how hard it would be. I literally thought, you
know, of course that should be here and I thought, I just you know, I can’t understand why it isn’t here,
and I didn’t go to that next step where I was describing of the resistance wasn’t 'til much later that you
know I’d reflect on things and think about it. I was just very young and went, oh, of course this should be
here. And I guess it was almost like thinking like, just nobody thought of it. You know, I didn’t realize it
doesn’t exist because there are real barriers. I just thought like, nobody got to it, or you know, they just
didn’t check out that book that day or something. So, I thought about it and thought about it and
thought about it and eventually decided that well, there weren’t other people coming along to do it and
I felt I didn’t know what the heck I was doing and there must be experts because this is Pennsylvania,
they’re experts in everything here. But I just kind of waited and finally went, well I either have to stop
thinking about this or do something about it. So I went and did something about it. And, so I went down
to the local ARC, the Montgomery ARC and talked to somebody and they gave me a room and we
invited people from Montgomery county and five people showed up. And again, other than this movie I
had no idea what I was doing. In fact I’d never been with a person with disabilities. I’d never been with
five people in a room with people with disabilities. But I’d done lots of group work and I’d facilitated
groups and you know, we could certainly come up with some ideas. And we sat in a room and said showed the movie. That was really interesting. So I showed people with disabilities the movie that I was
so moved by. They saw the movie and they said, Mark, that’s so sad. Those people are so disabled. I was
going, oh, that wasn’t quite - don’t you see yourself in it? No, they didn’t see themselves in the movie.
But they were very interested in the idea of putting on their own conference and bringing people
together and working on that and so we came back the next week and the next week and the next week
and we met four or five weeks in this old, rundown building that the Montgomery ARC had. And
eventually people agreed that they’d like to do a conference. And one of the really, really fascinating to
me is the name because the film was People First and most groups around the country that existed were
People First groups. And clearly the use of the words ‘people first’ is very powerful and resonates and
you know, is very useful. So from an organizing point of view, that sort of, I’d done some organizing. I’d
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done a lot of anti-war work so I had you know, skills and knowledge and thoughts about how- how you
bring people together. From an organizing view, I’m one of the people that adopt People First because
the name was powerful, it was tested. They’d be part of other groups, they wouldn’t be alone. But they
had no interest in that word. It had no meaning to them whatsoever. So, we’re having the conference
and we’re working together and so we’d take this sheet of paper and go okay, well I’m gonna write
down, we have to invite people. We got to get people. That’s how you get people to come. You come up
with the words, I’ll write down your thoughts. And we did that. And so, okay, we have to have like a
title. Who are we inviting and who do you want to come? And they were very hesitant around all these
labels and words. One time I asked them I said, okay, I know everybody hates this word but you know,
what are you gonna do about this word, this mental retardation word? And they turned on me and they
said Mark, that’s a terrible thing to say. And I just felt like a knife had gone in my heart ‘cause you know,
I was the good guy. I’m just like trying to help people do things. So that was pretty shocking. And you
know people talked about being called that dirty word on a bus and just how painful it was to people.
So I went, okay, you know, that’s obviously not gonna get it. Practical matter, we got to write this to
somebody so like you got to come up with something if you don’t want that. And so people put up as
the heading you know, we’re inviting people like ourselves. And that was the big, you know, to people
like ourselves to come to this conference and all these things. And eventually over time that became
Speaking for Ourselves; it stuck and is the name today.
06:58:00:10 – 06:59:52:04
Lisa: Talking about the early days of Speaking for Ourselves, when the group initially came together,
what were its priorities? What did it set out to do?
Mark: Well I think that came out of, you know, what would the groups be? Because people had
identified, at the conference they’d have groups. But I think the initial goals really were just very much a
self help group of just people coming together, you know, and seeing other people like them that could
share. And I think in the really big picture people’s goals really were the notion of meeting other people
and making friends and learning things. And I came to understand that in spite of - our service system
was totally founded on an education model and learning theory and what I came to understand was that
people are not being taught much of anything. That was kind of startling. You know, from sort of my
professional hat and my organizing and here I was doing this volunteer work and you could kind of see,
you could go to like state government at the top and state capitol and here you go to somebody’s
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house. You just see that by and large people aren’t learning anything and they were thirsting to learn
things. And so that’s what the accomplishment became that people could learn things. So just, you
know, some of the typical things, typical transportation and labels. But it really was and remains, I think,
those notions of meeting other people and learning.
06:59:53:06 – 07:02:05:22
Lisa: Did you find that leaders were emerging in those early days?
Mark: Yeah. Because I had some organizing experience it was, you know, I could create it in a way that
leaders would emerge. So we had one chapter and we put on a conference at Montgomery Community
College, actually we put on out first conference with the Arc of Pennsylvania. They were having their
conference coming up and it was suggested to me that a way to get stated would be to have a self
advocacy day at the conference and they would give us a room, so it’s be no expenses. And we could
advertise in their existing brochure to have people come. And so that’s what we were working on was later in a year was a date and a place and that was held in King of Prussia, in one of the hotels in King of
Prussia. And at that, we had groups and at the end of the day we had reports from each of the groups.
And so, from leadership piece each group had to select their own reporter. And so those people, and so
there were five or six groups and so those reporters became the leadership pool. And the basis really
was democracy in action because while they hadn’t elected officers they had in effect elected their
leaders to represent them to give report to the other groups. And they had some trial by fire. They
actually had to speak up and say something. So those people became the sort of core leadership group.
And shortly thereafter we expanded to five counties, so that was a big step to go from one group to five
groups. By then it almost became a full time, part time, you know volunteer job and I’ve got all the
groups and work with people and develop officers and it was an exciting time.
07:02:06:19 – 07:03:50:24
Lisa: How did the organization support its work and what was your role in the organization as it evolved
and expanded?
Mark: Well I, was noticed more and more ‘cause it was really successful and it was pretty exciting and
you could see people doing things that they’d never done before. And that was pretty extraordinary. So,
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I was you know, spending almost all my time doing this and I was single and you know almost every
evening we’d be out having chapter meetings organizing meetings and people. And we got a few little,
you know, people would donate things. We had a few grants, a cover, some gas money. But basically it
was all volunteer. We got chapter advisors and they were all volunteers and so there was very little
money required in the beginning. And I think that’s a strength because it requires you to really develop
your recourses. I’ve seen several groups in other states over time get a 50 thousand dollar grant and
start up and they almost always fail ‘cause eventually that grant runs out and they’ve come to - they
have an office, they have computers, they have this, and they expect that level of resources, which is
somewhat unrealistic. And they haven’t had the track record of how do you raise those funds? So I
think, I’ve always been a grassroots person so I believe that’s the way to go.
07:03:52:05 – 07:04:48:07
Lisa: How did you attract members to Speaking for Ourselves when some of the people with disabilities
were disconnected from community, maybe even residing in institutional settings?
Mark: I can’t really remember except I meet a lot of the original members of Speaking for Ourselves and
they will say, proudly, almost like special, like remember Mark you came to my house? And I can’t even
remember, how could I have gone to that many houses, but I must’ve driven a lot of miles that I forgot.
Once people started to come it was pure recruitment. You know, they would recruit their friends to
come and say this is different. But it was hard 'cause there wasn’t self advocacy. Nobody knew what this
strange this was. And there wasn’t any support from providers or transportation and all these things,
but people began coming.
Chapter 3: Speaking for Ourselves and Advocacy Efforts
07:04:51:01 – 07:11:22:19
Lisa: In conversations we’ve had previously with Debbie Robinson, she recalled you and she and other
members of Speaking for Ourselves investigating conditions in institutions. I believe that SFO was
awarded a grant to investigate institutions across the state and report back. So I’m wondering if you
could tell me a little bit about that experience. Who was involved and what you saw?
Mark: Pretty early on, the issue of institutions became a primary goal. But it took awhile because it’s so
frightening. People are terrified of the institutions. People had horrible experiences by and large when
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people moved to the community. Like when someone moves out of an institution they get in some sort
of group home and they start to talk about what happened in the institutions. It just, almost across the
board, the staff will sort of pat them on the back and say oh you don’t need to talk about that anymore,
you’re not there, it’s safe. So people have very few opportunities to raise those issues. And so I recall
directly we were on a retreat at Fellowship Farmhouse and people started talking about the institutions
and the abuse that they’ve had. It turned into a very, very emotional and difficult time of people talking
about what happened to them. And after the retreat was over, I had endless providers call me that,
what had happened there and what had I done? The person comes home and they were upset and they
were talking about all these things. You know what I realized was that this was just people desire, need,
to flush out, to get at these painful experiences that they had and there’s no opportunity for them to
talk through these things or share these things. And so they, once again, were accused of making it up or
falsehoods or all these things that I think today people would admit that those things happen. So that
was a camaraderie that people found. A safety net that people could talk about what had happened to
them. So it took quite a while, it took several years for people to gain the strength to be able to say that
they wanted to work on helping other people get out of the institutions. It sort of, it’s a common
experience of I don’t want someone else to have this same experience that I do, but this is much
different. These are their peers, their friends who are still left there. So they’ve gotten free and there’s
all these people still there. So, you know what would we do about that? What could we do about that?
So we began to visit people in the institutions and that was very difficult. And we decided to start
chapters for people in the institutions but in the community. And that was a really major sort of
question at that time in self advocacy that you know, was springing up around the country. Do you have
self advocate chapters in the institutions which has a lot of merit to it, or do you have it in the
community? And we decided people didn’t want to go back to the institutions so we had it in the
community. So we were able to get support from the institutions, from the state, that they would
provide transportation of people to come to county libraries and all that which is pretty astonishing. And
so from that we developed relations with the people but on safe ground. And that was the difference.
That they weren’t - had it been in an institution it would’ve been institution staff would’ve been there
and you know, if you speak up you go back to the unit and somebody smacks you in the head and so
forth. So, we met on safe ground and we didn’t let staff stay there and so people developed connections
and relationships. And so, that was sort of our strategy. Was not to close the institution, not to confront
the institution, but was to make connections with the people and then to speak to those members who
didn’t live in institutions could go speak on behalf of the people. So that’s when we began going to
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hearings and going to - that was some of our first meetings with the big state governments. We got a
meeting with the secretary of department of public welfare. It was for people to speak to the issue of
what are you gonna do about people in these institutions. And that’s where the grant came from. So, it
really wasn’t so much investigating institutions. It was visiting people in institutions. And I wasn’t
particularly interested, and I don’t think our members were, of identifying, to be able to say the
institution’s horrible. We felt that we could make the case just from speaking about it. That we don’t
need any facts. And we also found that when people had facts, they could get tripped up. Everybody had
their own set of facts. But when somebody spoke to, you know, I’m not Georgia, at Emeryville and she
was lying in bed and she had bed sores on her. And that was pretty tough for someone to dispute. We
never had anybody come back and say, no she didn’t have bedsores on her. Nobody said, where’s the
incident report you filled out? So it was very powerful. And so that was our strategy. So then we got this
grant from the Protection and Advocacy and it really was to support the travel money. And so we went
around the state. Went to seven or eight different state institutions and we would tour and visit people
and the whole point was to be able to connect up to people so that we could share their stories and
have a position to advocate from. So that was our strategy. To have our membership, have direct
experience, and also a number of our member hadn’t lived in institutions and so that they could go to
this place and they were pretty shocked. Pretty shocked when they went there.
07:11:23:05 – 07:17:41:17
Mark: One of the things about self advocacy was it really was sort of two things. It was really a self help
group, in many ways sort of like alcoholics anonymous. People helping themselves. And I came to see it
as two sides of a coin, I would envision in my mind and I’d even talk to people about that. One side was
people helping themselves, get stronger, do things. The flip side of the coin was changing the world. And
so it was both of those and often times people wanted to, people came from one place to the other. I
remember somebody once saying, well self advocacy is good but all people really talk about is getting
the coffee or pizza and they’re not doing enough change, change in the world. Other people say, you
know the other side, you have to be about the other and so you need both of those. People need
relationships and friendships and coffee and need goals, making a difference. We didn’t just come here
just to talk. And sometimes it was really new and very weak and fragile and so the goal people really
want to talk about was the institutions. They were interested in transportation, they were interested in
getting out of workshops, and employment and jobs and better staff, but institution was really the core.
And I always felt that we were much too weak to take on that issue. That people would just get - it
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wasn’t Speaking for Ourselves as an organization, it was the individuals. You know they would go back
home and go, you know, I would think often somebody would come to Speaking for Ourselves and
they’d kind of hold their head up and get their shoulder, and they’d be doing, smiling and stuff, and
they’d go back in the group home and somebody would say to them, you know, who do you think you
are? You’re just a client here. You’re nobody. So strategy became for the public policy things to invite
the most powerful people that we could get to come and be with us and develop relationships and
friendships with them. So at a conference, the very first conference, we somehow, I’m not even sure,
stumbled upon that idea, but the very first conference in 1982 we had six groups. And what we did was
ask the most powerful people we could think of to come be facilitators at groups. And so we had
Jennifer Howse was an example who was the state director of mental retardation for the state. And the
invitation was you know, you’re a big mucky-muck and you’re removed and this is a chance for you to
just come and share with people. And you know, all these people, they actually, almost all are pretty
good facilitators just ‘cause they wouldn’t get in that position if they didn’t know how to talk. And so
this is a chance for them to just kind of be an ordinary person. Everybody we invited came. An
interesting thing with Jennifer Howse it created a big, very big flak and big hoo-ha ‘cause this is the Arc
state conference and she wasn’t coming to speak to the Arc. She was coming just to do this little group
thing. They were kind of like, unhappy. Another example of that was the governor’s wife, Ginny
Thornburgh. The governor had a child with a disability and that was kind of a big issue and when he
came, Dick Thornburgh, would that make a difference? He was a republican and would that be
sympathetic or if he was in it or how might that go? And so we tried not to play on that sort of power
politics level but just simply invite Ginny Thornburgh to come to our little chapter. And this was early on,
it’s probably 1983 or something. So she came to Montgomery county public library with a chapter
meeting of, you know, thirty people maybe, and was very gracious. Came with this big, burly security
guard who looked like a football player that sat in the back of the room and just had a conversation with
people. Sat there and asked people, and she became an ally. A very helpful ally that, we we’re very, part
of the strategy wasn’t to ask people to do things. It really was just come and what we wanted was the
next time that they sat in the rooms where they make big decisions and I often think all the decisions of
the world are made in elevators and backseats of cars with three or four or five people. That when they
were making those decisions, somewhere in their mind they would have, oh that was LouAnn Carter
who is one of the founders and speakers. There was Harry, there was Frank. There were these people.
And I think it was pretty effective. And so she came and was just very gracious and how that helped was
that over the years she opened many doors for us. She - I don’t know that we ever asked her to do
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something but she would send a message down, or she would get us invited to Washington, or she
would just get doors that would open. You know, somebody would say, oh Ginny said to come to somebody got to go to the governor’s mansion for an art exhibit. So people would start getting seen.
Also it was really important was for people to get experiences because people had so few experiences.
So just to go to Harrisburg was a really big to-do. So people needed some of that under their belt just to
be part. One of my goals is to get somebody in the DD council. The Development Disability Council, and
Ginny was very helpful. Vouching for person, that was a big thing. And you never even saw it, it was all
invisible. You know, but she could just send through her way a recommendation that this person would
be a good person, kind of thing. So those were some of the helpful strategies I think that contributed to
effectiveness.
07:17:43:09 – 07:21:27:16
Lisa: I wanted to go back for just a second if we could Mark to the commitments, the commitment of the
self advocate who were willing to go back to institutions, revisit institutions. In some cases I think of
Roland Johnson going back to an institution to advocate for others having spent most of his life in an
institution. What if someone like Debbie Robinson who had heard about institutions and has described
herself as being fearful of them and yet being willing to go into fight for the freedom of their peers and I
wonder if you can comment about what that says about their commitment to their cause?
Mark: That was really difficult. That’s probably the most painful - I’m sort of misty eyed just thinking
about that. Very hard on my part, and I got criticized by my peers a lot. You know, who was I to ask
people to go back to the institutions? And I always thought, one is offering people the opportunity and
the way I would? it really was that they were pioneers. They were pioneers to help people. And people
became leaders in Speaking for Ourselves almost across the board. One of the prime motivators was
they wanted to help other people. And so, it was kind of a hard thing but I saw myself as an organizer
and it really was put up or shut up. It was like, this is a tough thing to do. And we didn’t just one day
show up at the institution. We spent retreats and we spent time and we spent a lot of planning effort
and thinking and doing and we would be sure that we always had talk through time after it was over and
processing time to do ‘what did that feel like?’ and ‘what was that?’ So you know, we’re careful not to
just have somebody just one moment they’re there and the next moment they’re back in their, either
group home or their own apartment and they’re all alone and what are they gonna do? I think each
person had their own reason for doing it. But it was a very, it was very difficult. There’s a psychological
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term that later as we dealt with abuse ‘cause people almost everybody had been abused. It was just
really astonishing in Speaking for Ourselves. And the psychological term is called vicarious
traumatization. It’s the notion that you connect yourself to somebody else who’s been traumatized and
some of it carries over in you. And you know, that was hard for Debbie Robinson or Roland Johnson and
people. And we did a lot of work at Woodhaven where we’d go monthly and there were a number of
people who went and came back and said, you know Mark I just can’t do that. And that was fine. Also
we do it as a group so you know, we never had somebody with disabilities go in themselves to visit an
institution. It was always a group process. And when we did visiting around the state, we’d stay in hotels
and so that was a chance for people to be together afterwards. And I think a lot of it was forming a
team. So you weren’t there yourself, you were there you know, with people that you had been in the
trenches, you fought some fights, you gained some strength, and you could go there. But it was difficult.
07:21:28:26 – 07:23:50:10
Lisa: You became Speaking for Ourselves’ first executive director in 1985. Are my dates right?
Mark: Uh-huh.
Lisa: Do you remember at that point what was the membership and how many chapters did Speaking for
Ourselves have around Pennsylvania?
Mark: Well, I think when I became, and I always called myself a coordinator. I thought when self
advocate groups got executive directors they really were on their way downhill. I think there were about
five chapters and about five hundred members and what happened was that I was I’d whatever, I wasn’t
working. Whatever job I had had ended so I literally was doing this full time and I kind of thought of it well I was working for the special master and we all got laid off and I kind of thought of it as like I’d
gotten a grant. So sometimes people ask me and I’ll say kind of funny but you know, so I tell people I got
this. People will say, well how are you doing? I’ll say well I got this grant. They go, wow, where did you
get it? ‘Cause everybody wants to know. How did you raise it? Where’d you get it? Who’d you talk to? I
say well you know it’s a state grant. I say well it’s unemployment insurance. And they’d laugh. And so
that gave me at least a few bucks to do this. I was doing it full time for six months, nine months,
whatever that lasted for. And then I was gonna get a job. I had a job. I was gonna go do this job. And
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some of the people I was working with, when I went to my friend’s colleagues, and I went to explain to
them my great news. I got this big job, I’m doing. And they said no you’re not. I said, what? I remember
being in a car. We were driving together, I was in back of car, and they said you’re not leaving us. You
got us into this boat. They were chapter advisors. You got us into this boat and you’re not leaving. And
that led to, okay, I guess we have to get some money to pay me and if I could do this for a job I guess I
could do this and so it lead to - that was really the first thrust at raising some money so I could at least
pay some bills to do this. And it turned out to be pretty successful.
Chapter 4: Speaking for Ourselves Connects to National Disability Movement
07:23:51:25 – 07:27:36:13
Lisa: Was there a moment when you realized that the organization was sort of moving beyond being a
safe place for people to share stories and connect to becoming part of a larger disability movement that
was happening in the country?
Mark: I don’t think it worked that way. I think it more was natural inclination to do more. You know?
People wanted to accomplish, people wanted to do something and I think from day one they wanted to
do, that’s why people became leaders in Speaking for Ourselves. But, you know, it was impossible or
how could you do it? And so I think as doors opened and people gained strength and people gained
some knowledge and abilities their appetite for doing more grew and they saw that they could do more.
And so they took on bigger issues. It really was the institution issue that required us to reach out. It was
very clear that, dealing with the institution where you had parents, I mean, people would blow up your
car. And very real, bad things that could happen to people for speaking up. And so we consciously
reached out to the independent living movement to make those connections and there was a real
change and the real change I attribute to Justin Dart. He’s considered the father of the America’s
Disabilities Act. And we invited him to one of the - the first national conferences that there was in 1990
in Nashville, Tennessee. And he was the only person from the physical disability community who
responded to us. Other people were kind of, you know, that’s nice. And he came to the conference and
he was just blown away that people were doing this stuff themselves. And much later, when we became
colleagues and even friends, I asked him about that. You know? You were the only person and you came
and why, help me understand why you did that? And he turned to me and he said, ‘Well,’ he said, ‘I
didn’t believe any of that stuff.’ He said, ‘I thought you non-disabled people were just making it up.’ He
said, ‘But I had to come see for myself.’ So he opened doors ‘cause he was such a revered figure. He
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opened doors. And so when we went to do the institutions there was an effort by the parents to keep
the institutions closed. They were gonna pass a legislation, a bill, that no institution could be downsized
unless legislator approved it. It was very archaic legislation and so we got very active in that. And there
were hearings around the state. There were seven hearings. We had a very strong presence from the
independent living movement and camaraderie with our leadership but they, and I can remember to
this day, they like line the room, but they’re all on the outside. You know Debbie Robinson, Roland
Johnson, people to be in the leadership position of stating objections and so that relationship was very
important because our leadership could see them as heroes. They’ve been doing this for a long time and
look up to them so that connection is very important.
07:27:50:22 – 07:28:58:28
Mark, I wanted to ask you just a little bit about self determination. Pennsylvania certainly would be one
of the leaders I suppose in the self determination trend. Early on it had a grant from the Robert Wood
Johnson Foundation to do pilot projects in self determination. We spoke again with Debbie Robinson
about her role in promoting self determination to members of Speaking for Ourselves and other folks
with disabilities, and she said on reflection, she said she wished she’d known more about what self
determination entailed. At least programmatically because she was supporting people who had never
had basic choices such as what they could have for meals, what they could watch on television. And to
ask people to make those larger choices of budget and control maybe seemed too much and I wondered
if that was your impression also or what you felt about the success of self determination in
Pennsylvania?
07:29:10:08 – 07:35:59:08
Mark: The principles of self determination, freedom, authority, choices, is something that was just
inherent in just the very fabric of what self advocacy was about. So, I thought it was just a new name for
something that I remember as deeply believed in. And we had always built into our work retreats and
time for reflection, Myles Horton who was one of the really civil rights founders, leaders, promoters, in
the background ran a leadership institute Martin Luther King went to, Rosa Parks went to. And he
always said you needed action and then you needed time for reflection. He kind of drew this as a circle
kind of thing. And he said, ‘Times when you’re not acting or you’re not moving so fast, you have to have
reflection time.’ So we always tried to do that and out of our reflection time came this new idea that
was sweeping the country of self determination. Many states were doing it. Robert Wood Johnson was
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putting out these grants. Pennsylvania was gonna do something so it was like, okay, how do we embrace
that? How do we get into that? So we developed a training program, self determination. Carolyn
Morgan and Debbie Robinson ran it. We did it around the state and had components in it. And they
were the elements that people want in their life but the mechanics, the fundamental piece of what
made self determination different from other things was people gaining control of the money. That was
a huge systemic and structural change that people get control of their money. So it wasn’t just as simple
as, do I want Coke or Pepsi? Or you go to McDonalds and do you want a Big Mac or a Whopper? It really
was the notion that if you get control of the money, rather than making those choices was okay if don’t,
if I don’t buy a soda everyday this week, at the end of the week I’m gonna have seven dollars available
and I’m gonna get something that I want. And so it really was a profound change. Pennsylvania had a
project and what we did was we’re able to convince Robert Wood Johnson to put on one of their
regional conferences and they had seven or eight around the country. And we were colleagues with the
leader of that, Tom Nerney, who was a real revolutionary hero to many of us, and it created the ability
where people could really control their own money. And that was the most successful, that was the only
conference ever put on my people with disabilities, the only by a self advocacy organization. It almost
bankrupted us. We had to put down 40,000 dollars on a hotel charge, not knowing who would come,
who would show up, what would happen. And it was enormously successful. It modeled behavior, it
modeled the people themselves being in charge, that they could do a conference and we had a
thousand people come. That was the largest of all the self determination conferences to that day and it
was a big, big deal. Gave our membership lots of work to do, important work. Feeling successful,
enabled us to be in a much bigger venue. So that was really successful. The downside of self
determination was that Pennsylvania never really implemented it. It did improve choice, but there were
very few people who ever really got control of the money. And when you did it was phenomenal. I
remember Carolyn Morgan and literally you know, nine months of planning and meetings and all these
things and her money was gonna be moved to an agent. She would have a broker, and I literally
remember, and I was at her house a lot. She was the president and I would go. We’d have a lot of
meetings at her house 'cause she was in a wheelchair and transportation was hard. So I literally
remember being in her house, you know, on a Wednesday or Thursday or Friday and the self
determination she in came over the weekend and being at her house on Monday and the same staff
were there ‘cause she hired the same people. But on Monday, they were working for Carolyn. And it was
different in that house. And I’d never seen something like that. How could that happen? It wasn’t
training, it wasn’t philosophy, it just was you do the hiring and firing and life is different. Second week
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she had a cell phone, everyone had cell phones by then. Third week people were calling her when they
didn’t - when they called off, they had to talk to her and all of a sudden the people calling off went down
a lot. Really concrete things that happen. Other parts of the country, self determination has been
incredibly effective because what it involves in, and you don’t see it in Pennsylvania, but other states,
people spend their money on different things. One of the first things people do, Carolyn [Morgan] did it,
when people get real control of their money, one of the first things that they do with their money is they
increase the salary of their staff. They’re very clear who’s important, what’s important. And so they take
that money that would’ve been overhead. So being in self determination frees up substantial amounts
of money that goes to headquarters. And most people are able to increase their staff’s salaries by like a
dollar, which is a really substantial amount of money. And it says something, a message to their staff
that you’re important. Other states, people are able to change their living situation and in Pennsylvania
there is that but it’s very few people who actually benefit from it. There are other states that you
literally, you can change your agency like, you know, within a month you’re in a different place. And so
even Pennsylvania, it’s made a significant different. Given this kind of sad state of affairs where basically
their provider controlled everything.
07:36:05:12 – 07:38:09:23
Chapter 5: Future of Self-Advocacy
Lisa: So, Mark, I’m kind of shifting tracks a little bit but through some of our conversation with folks
involved in this project it occurs to me that the diversity of the disability community is both its strength
and its weakness in many ways. Do you think it’s possible for the disability community and its diversity
to become more united and consequently more of a force?
Mark: I think in many ways, I think disability’s a movement. In many ways movements are really based
on the relationship of the leaders and people knowing each other. And there is a lot more
connectedness between people with different disabilities then there was. I think the Americans with
Disabilities Act has really made a phenomenal difference. And yet, there’s competition. Somebody just
recently was complaining that blind people get more social security payments than other people. So you
know, they’re inherit, people looking out for their own issues. And then finally it benefits the people in
charge. The people in power will, you see this is the uprisings now, and spring uprisings in third world
countries and Europe, it benefits the government in power to get people to squabble and fight. And so
government will do things to divide and conquer. They’ll do things purposely. We’d give you money but
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we had to give it to them. So it’s an ongoing struggle. But I do think people made a lot of advances on
seeing their own issues, similar.
07:38:11:19 – 07:40:04:25
Lisa: Have you seen in your maybe now forty years of supporting folks with disabilities in community,
have you seen a shift in the way the community responds to people with disabilities?
Mark: I’ve seen a phenomenal shift and the biggest shift I saw was really American’s with Disabilities act.
And I can literally remember I would work with Debbie Robinson, Steve Dorsey, and we’d go place and
we’d stop, we’d be on our way to some event and we’d stop at a restaurant and we’d go in and I would
help them, they were on crutches, I’d help them through the door and we’d go up to say a cafeteria and
I’d help them - you know if I wasn’t doing it ,it didn’t get done ‘cause they couldn’t carry their tray. And I
remember around the early 90s of doing the same thing and I was just shocked. I remember like I had to
park the car or something and I came in and somebody, public citizen, had taken Debbie’s tray and
taken it to the seat. And I remember going to a movie, and we almost never did this, but I was with
Steve Dorsey and we went to a movie to do something fun. We were traveling in Harrisburg or
something, and so we went in, it was dark, and somebody held the door and that had never happened.
And so people’s willingness to help out, and today that’s common. That is really common. In fact, you
know, I was downtown this week and people would almost fight to hold the door or move somebody’s
tray. It’s common. You can depend on it. Somebody [ph] can go in a restaurant and not be able to help
themselves and they can depend on somebody to help them. That to me, may seem really small, is a
huge indicator of change.
07:40:09:01 – 07:43:10:08
Lisa: You heard parents concerns about community in the 1970s-80s all through the public hearings and
I’m sure through your work supporting folks with disabilities. How have those conversations changed in
forty years?
Mark: Well, that’s a really shocking thing. They haven’t changed at all. People’s fears are the same,
people use the same language. You would think, I would think, years ago when Eleanor Elkin and Tom
Gilhool we’re involved in the court case at Pennhurst and brought it about, there were not examples of
people. There were not the most serious, disabled person at Pennhurst. You couldn’t go to the person’s
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home and today you can. Right? And yet the parents are still fearful. Interestingly, one of the first
original studies, Jim Conroy is involved in Temple University, the Pennhurst longitudinal study, what was
the most shocking out of it was that they found that parents were almost 80 percent opposed to their
son or daughter moving. And they found in a very scientific survey that everybody was surveyed within a
year, that had completely flipped upside down. So a year of the person’s family member living in a
community where before, 80 percent were opposed and 20 percent for in favor, now of those 80
percent you know, they were in favor. 80 percent were in favor and there were only left 20 percent so
you had a complete shift. The problem with that is that no parent is willing to believe that in the front
end. So I literally could say looking in a parent’s eyes, a year from now you will say that’s the best thing
that you ever did. But they can’t do it in the front end. And I think it has to do with, it’s called cognitive
dissonance, but it’s you made that decision and to say you want or your son or daughter is to face, my
god, they stayed in here for X years and got poor service. I’ve seen people literally that you confront,
you confront somebody with photographs of the abuse that happened to their son or daughter and
they’ll just refuse to believe it. I think they’re caught in a very, very, very tragic situation and that’s one
of the things that motivated me so much to do the institutions is just not - people shouldn’t in that
situation. They shouldn’t be, you know, what else am I gonna do other than move my child somewhere
else. And that’s my hope that some ways we made a lot of progress, in some ways I had hoped by now
that - you know, there’s 200,000 people that don’t live in institutions from when I started this work and
by and large are in decent smaller community programs, and yet there’s still another 200,000 I hoped
that those people would be out and free by now, too.
07:43:16:27 – 07:47:28:14
Lisa: Mark, I’m also wondering about conversations you have with young people with disabilities. The up
and coming generation of self advocates. I’m wondering what they’re expressing for themselves and if
they’re able to do so more effectively, or at least more confidently then the past generation.
Mark: Well I’m sort of at two minds of that. You can almost identify a person with disabilities who went
through special education and didn’t. It’s that profound difference in terms of people’s self confidence,
image, ability, and willingness to speak up. Ability to read is just astronomically increase. So many
people who had the ability to read but just prejudice kept them from doing that no longer exists. Then
the opportunities and finally the expectations of parents are so much higher, so you see huge changes.
And all those bode fantastic for the future. The down side, and it’s a big concern to me, is the issue of
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organizing. I see less support and recognition for the organizations themselves. Right as we speak today,
the congress is in a midst of huge funding, threatening reductions. [ph] around the country have
significant reduced funding self advocacy organizations. And I see it as very troubling ‘cause it’s really
easy, particularly in seeing younger people come together and say, gee we really don’t need those
organizations. All that we want is just somebody to speak up well. And it’s almost, I almost hate to say
this, it’s almost like central casting. Call central casting and we’ll be the council and we’ll get two people
who can speak and they’ll come be on our council. But without the organizing, the organization, without
the retreats, without the thought provoking things, they only have their own personal opinion. They’re
not coming there having come to position like, you know, people with disabilities want something
around shelter workshops shouldn’t exist. It’s sort of a - that’s a tough issue. That’s pretty tough for just
one person to take on. Or that one person gets out of there and isn’t in there anymore. Or if you’re
articulate, they get on [ph] probably not even there. So I only think you’re gonna look back at those
deep issues if you come from belonging to an organization. If you have an organizing strategy and the
best example is Rosa Parks is like, she just got, the story is she just got tired one day and didn’t want to
sit on the bus anymore. The truth is she was at Highlander Folk Center before she was secretary of the
NAACP. She had spent decades working, striving, learning, practicing. She didn’t just show up there one
day. And that’s my worry for the future. Isn’t the people, but it’s the disability organizations will just say,
we don’t need, you don’t need to be organizing. You can just come and be on our committee, be in our
group. Come speak up at the president’s council. That’s particularly worrisome 'cause people have those
opportunities, people can get paid for them, and it’s very easy for people to embrace that 'cause it’s
ego-enhancing. You know, I get to stay in a fancy hotel, people listen to me. But I believe from real
change comes from building strong organizations that are gonna take stands and withstand the
adversity that has to be overcome.
07:47:30:00 – 07:49:06:13
Lisa: When we were preparing for this interview, you quoted the environmentalist and social activist
Byron Kennard saying, “Nothing can be done, everything is possible.”
Mark: My favorite book.
Lisa: Yeah. I’m looking forward to reading it, actually. How does that sentiment apply to your own work
or your work on behalf of folks with disabilities?
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Mark: Well just the title really sums it up. Nothing can be done, everything is possible. Both those things
at the same time. And it’s - everybody get’s discouraged so there’s that sort of to be overcome and the
powers that be want to discourage you. They want to make it seem like it’s hopeless. They want to see
themselves as they’re infallible. And it’s pointless to resist or it’s pointless to organize or you know, who
are you to think you could possibly do it. I used to have people say that to me a lot. Or would say to
Debbie or Roland. Who are you, who appointed you? What makes you so important? So we’d spend a
lot of time on what it means to represent other people. but I do think no matter how difficult the times,
there is lots that can be done. And even if there isn’t it’s critical to be doing that organizing so when the
opportunities come along you can take advantage of those. So I think both are there at the same time.
07:49:08:01 – 07:51:22:02
Lisa: When you reflect on your work over the years, who have been the people who’ve been
inspirational to you?
Mark: I think the big picture, I mean I think early on, Gandhi was really a real inspiring figure to me
because he took on, with nonviolent strategies, the British empire. It was not just nothing, it was
impossible to think that something could be done and yet he won people’s freedom relatively
nonviolently. Martin Luther King was certainly, and a lot of the people who surrounded him who aren’t
as well known. C.T. Vivian, he’s 88 years old and he just became again the president of the Southern
Christian Leadership Conference. So a lot of these sort of civil rights movers. Chief Justice Marshall,
Thurgood Marshall. People who had their houses blown up, people whose lives were threatened, people
who really suffered through trial and effort. And then the disability, Justin Dart has really been a hero to
me, and unfortunately passed away. I had the fortune to learn from him. Robert Perske, the key mover
in people being in prison. And again, I think, people with disabilities you know, Roland Johnson was
really a hero to me. Debbie Robinson. They’re just ordinary people just committed themselves to
helping other people with very little advantage themselves. And they stayed at it for years and years and
years and years. And I think probably that are my heroes are people who stayed at it. Decades and
decades, they’re still there doing the work.
07:51:24:00 – 07:52:36:07
Lisa: Is there anything that you still hope or dream about accomplishing?
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Mark: Sure.
Lisa: Easy question.
Mark: You know, I’m working in New Jersey and they have four times as many people in institutions as in
Pennsylvania. How could that be? And it shows the power and leadership which, in that case, the lack of
leadership who want to do something different. So it shows how important people who believe the right
things make a difference. And so I would like to see, it’s hard to imagine, but in my lifetime, where there
would be no more of those institutions in the country. And I had dreamed and hoped that would occur
and it’s kind of a crapshoot now, but we’ll see. And I think for the younger people, I get more chance to
work with create and organizing models and building leadership for people themselves.
07:52:42:10 – 07:54:44:28
Lisa: Mark you wanted to add some thoughts about the role of leadership or the future of leadership.
Mark: I think the piece that I want to speak to is people with disabilities being at the table. Being in the
seats of power. And not just, now it’s common for people to go to conferences, it common for people to
serve on committees, it’s common for people to speak up, but really being in the points where decisions
are being made. And people make those decisions inviting people into that room and seeing the
involvement of people as part of developing people’s experience base and their leadership. 'cause these
that were struggling with are very complicated and will get much more complicated as we live in a more
complex world. But all of those are that the, I believe, that having people in a room changes the room.
And so whether or not the person understands bill 36 B versus section C or the fine print, that people
bring to the table whether they’re the most articulate or the least, they bring to the table opening of
other people’s eyes and awareness of how the decisions we make impact people. And I think these are
even more important than ever in the times that we live in that we’re facing a number of years of very
difficult decisions that people make and I think more than ever the people’s role is really critical.
Lisa: Thank you.