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 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 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 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 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 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 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.