Chapter 5: Future of Self-Advocacy

07:36:05:12 - 07:38:09:23 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 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 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 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?

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 gets 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?

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.