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 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 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 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 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, 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.