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 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 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 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.