DAY THREE

Chapter Four: Freedom Committee cont., Speaking for Ourselves and Early National Self-Advocacy

20:11:34:01 - Lisa: My name is Lisa Sonneborn and were conducting a video interview, a third part of our video interview with Debbie Robinson at Temple University in Philadelphia, Pennsylvania on October 21st 2011 also present as our videographer, Lindsey Martin and Debbie, do we have your permission to begin our interview?

Debbie: Yes, you do

20:12:00:05 - 20:14:14:16 Lisa: Thanks. Welcome back. Debbie, I wanted to talk to you, um, about Speaking For Ourselves again. We talked a lot about your becoming involved with Speaking For Ourselves and your relationship with Roland Johnson who was your mentor. Um, you emerged as a leader for Speaking For Ourselves very quickly. You moved through the ranks very quickly.

Debbie: Yes.

Lisa: Can you, can you help us by telling us what positions you held in the organization?

Debbie: Well, um, I was the, um, I believe, I believe in, um, that, um, when I was at the chapter, the Philadelphia chapter, Roland was there. He was the president, um, and about I believe six months later which would've been probably, it was in the fall. I'm not sure when I, the date that I first came in and met Roland. You know, into the chapter. I don't know, it was in the fall I believe maybe around October. Um, and I think it was about six months later when they were going to, um, elections, um, the chapter elections, um, and, you know, Roland was very impressed with me so when they took the vote, um, I, uh, became the elec...and the members voted, um, and including Roland, um, voted me in as, um, the, uh, the president of the Philadelphia chapter. I'm not sure if I was the first woman president in that chapter, I believe I was, um, so, um, in that fall, six months or seven months later I became the president of the Philadelphia chapter after Roland, um, Roland Johnson and I believe, you know, Richard was my vice president then.

20:14:14:28 - 20:15:11:10 Lisa: Debbie, what, why do you think you rose so quickly in the organization. What do you think Roland saw in you?

Debbie: I have no idea because he saw potential I guess. You know, Roland never really told me what he saw like I, he just in his mind potential, um, you know, things like asked the questions I've asked, uh, when I first came to Speaking For Ourselves, um, you know, in my responses in the things I wanted to know about Speaking For Ourselves. I think that impressed him. He saw something in me that I didn't even know I had that no, um, yeah, I had no, I had no idea and I had no idea what I was getting into.

20:15:12:06 - 20:18:03:25 Lisa: Debbie, what other positions did you hold at Speaking For Ourselves over the years? You started out as president.

Debbie: Yes, and then, um, I went to, um, I went to a board meeting. I missed the first month or whatever month I missed and I don't know what happened, um, but the next month Roland was the head of the table at, one of the heads, um, Nancy Nowell brought me in. I didn't know, I was just getting to know my advisor then, she was the advisor of the Philadelphia chapter then. So and I had no idea, it was my first one, um, and, you know, even though I missed a month, I remember, um, when I walked in with Nancy right away Roland just stopped everything and he got, I was scared cause Roland was very strong then and asked me to sit up front and I didn't have no idea what I was wrong, what happened, what I did wrong and the next thing he told me was why did I miss one of the board meetings? I said what's a board meeting? I said to myself, what are you talking about. He said you missed October or whatever month it was, I think I came in in November, um, I think I missed the October or September one. And then he said I was supposed to bring a pen and paper. Then he turned over, Mark was sitting right there. Then he turned over to Mark and said why did she, you know, why did Debbie miss this board meeting. He was wondering what happened and we're both looking at Roland like Mark don't know who I am, Roland. Nobody on this board know who I am in Mark says, I don't know who she is. And then he went to Nancy and cause Nancy drove me. It's like wearing a dunce hat and then he told Nancy, well, um, why didn't you and then he says, where's your pen and paper? I said what you mean pen and paper. You're supposed to take notes. What you mean notes? And I had no idea what I was supposed to be bringing. And then he turns to Nancy and says, Nancy why didn't you tell Debbie to bring a pen and paper? I was, you know, you sit next to Roland and he's just getting on Mark and Nancy for, I don't even know these people. You know, I'd never met, you know, I never, I never, I didn't meet, you know, it was my first one me being president, Roland's sitting next to me and I didn't know anybody on the board. So

20:18:04:08 - 20:21:36:26 Lisa: Later you served on the board. How did you serve on the board?

Debbie: Um, I started coming, I started, um, getting, going every month, um, uh, you know, um, Roland made sure, um, and he saw again, Roland, um, saw something in me, um, and mostly there was a lot of men on the board. I mean Nancy was there, there were, you know, uh, um, and I, you know, I guess I was the president for, for, I, my first two years and I think after that, um, I, um, he wanted to give me this experience so I, I believe I, um, my first two years I was just learning, um, so I had a lot to learn and that's actually when, um, you know, in that president, um, for the chapter that was my first experience even dealing with institutions so I had no idea, um, about institutions but I learned that through the chapter. I went, I think it was I believe it was the third year, um, and the board had an election, um, and I had no idea what I was getting into, God knows. Who knew about boards and I'm just learning about Philadelphia. Um, Roland, the board and I had to step out of the room, you know, I believe Roland had some influence, strong influence. Nobody would second-guess Roland's, um, and actually I, um, was that first time I ran against or was it the second time. I might've been the first time when I ran against Steve and that was, uh, and Steve had a crush on me around that time when I first came on the board. Yes he did. I had no idea so, ha, ha, um, uh, but then the election took place and the next thing I know the board voted me in as president and I had no idea what I was doing and I almost had an accident in my, uh, you know, I, um, I had no idea and I'm looking like, oh my God what did I get into? I had no experience, nothing. I came from New York, I was a New Yorker. I had no idea what I was, Lisa, I didn't even had no clue what I was getting into, none. No experience, nothing. I was an outsider in here and find out that I was the first woman board person, board president, um, the first one. And then we had the newsletter. They had my picture on it when I was a younger, when I was younger and I was, I had a picture of me, um, and they had an article, um, the first woman president, um, so you might as well say I broke the mold. Uh, knowing that I didn't know what I was getting into.

20:21:37:14 - 20:27:17:10 Lisa: Debbie, while you were the president, later board president in Speaking For Ourselves in many ways you guys continue to break molds. You had mentioned a little earlier, um, hearing stories about institutions and in fact, um, you had actually or Speaking For Ourselves received a grant from the office of developmental programs while Nancy Thaler was in office to visit institutions around the state.

Debbie: Statewide, um

Lisa: What did, what did you do on those visits?

Debbie: Well, we had to, um, I remember us, um, in that grant I remember us, I had to, she also set up a meeting, um, when they had the state, all the state directors. There was this state director's conference or meeting and Nancy invited us to be there. The only way you can get on there or we were invited to talk and we, um, and Nancy introduced us and, um, we, um, went to the state directors, um, you know, cause they needed to know who we were and it was to set up, introduce ourselves and introduce them to set up visits, um, to visit these, all the institutions so we had to break up in teams. Um, you know, how would we, uh, you know, uh, and we had to, um, you know, you know, and it was, it was a journey, um, and we, um, with the state directors and, uh, and so, um, when we set them up they gave us the contacts and who to contact into the institution to know that it would come. So they knew we were coming. They had somebody there in the institutions to show us around and introduce us to people, um, you know, to visit the different, you know, and, um, and we were to visit all of them so that, so I was staying overnight, um, and we also had to prepare ourselves. We had a lot of team meetings, um, cause it, we had to learn how to travel together so, um, you know, Mark, um, and Tom was driving so we had a couple of drivers and I'm trying to think if Nancy was with us then. I'm not sure if she was but, you know, that and then we, um, you know, that, like I said the staff showed us around, introduced us to people. Um, we had to be very careful on what we saw and what we could, you know, for the safety of individuals and like I said, um, we had to prepare ourselves to what we needed to do and what it we, you know, and what we can say, you know, without getting anybody, um, into trouble or, you know, things we saw and things, um, you know, so we, um, afterwards, um, speaking, um, I mean that took weeks and weeks. We, and we all got together after, after each one we, you know, we had to go into the hotel or what, get together at some point cause we had, like I said any institution we broke up into teams cause it was so big so like I was with some folks and, you know, and then we, uh, you know, basically we were in little teams because they were so big, you know, the institution we had to cover so we had, we had to cover in different, different parts of the buildings and, and, um, you know, and take notes in what we can remember and then we got finished and, um, and we did. We got together, um, at, in each ones and we talked about it, we, we had to, we had to compare notes, we had to, uh, what we saw, what we, what we could, what, you know, and we, we, uh, the teams got together afterwards, met among ourselves to get, um, we had assign the team leader to report to each of our teams to, um, you know, so Mark and, uh, Tom and I don't know who else but what is I don't know was, Jim Conroy, um, but we had a couple of people with us, um, and we had to get our notes together and get it and get a report to Nancy in a way where, uh, you know, Saw and how we handle certain situations, um.

20:27:25:10 - 20:28:08:20 Debbie: Cause Mark wrote, uh, I mean, um, Mark, um, wrote out the grant and we, um, you know, and we, I was at the table with Nancy when we put together the particulars and what they wanted and what we wanted to see as well and Mark had to put it all together, um, to get, Mark was our grant writer and, um, you know, things like that so even though I, I was one of the ones besides Roland, uh, working closely on, on, um, the particulars of the grants that we did.

20:28:08:28 - 20:34:18:13 Lisa: Debbie, what did you want to see when you, when you visited institutions? What were, what was your goal for the residents?

Debbie: Well, at that time when we were doing that there was a lot of abuse going around. It was just a whole lot of stuff going around. Um, and we, you know, there were, um, and we were basically wanted to see if we could get people out but also show that, um, know, how the dangers that people were in, um, and we basically as Roland would put it, um, wanted people out of institutions and our argument was cause we, we've heard a lot of abuse. I heard it firsthand when I was president of the chapter, um, my first experience was dealing with, um, half of our members were from institutions, coming to chapter and we did see a lot of, um, injuries, I mean, I remember this one gentleman, on one side of his face, I don't know if it looked like a black eye, he fell or what but I couldn't like say, um, you know, and on all I could say, all we could say is, um, we was concerned to make sure this young man sees the nurse and, uh, see that, uh, and the staff told us that he fell. You know, so we saw things, I mean, on people's faces and we, um, and then we ended up going to the PAC and saying we wanted a certain amount and I don't remember what, of institutions closed. We marched in there and I think, who was in the head of the PAC then, it wasn't, um, Kevin. It either was Steve Eidelman or John White at that time. Um, cause of what we saw we said we wanted a certain amount closed. Our findings in what we reported and Speaking For Ourselves stood firm and said we wanted, I forgot how many we had, how many institutions in Pennsylvania that was open, um, but, um, uh, uh, we just went in there and said we want a certain amount closed and that's it, uh, we went in there with, with a purpose and we stood by it, we had other people, um, like Bill West, uh, he was a very strong advocate, um, with us till the end, um, you know, because of people at the time when we went in, um, the horror stories, the horror stories and then when we found out, um, about Woodhaven and that Temple owned part of Woodhaven we really camped out. That really was non-accessible. Oh, I don't, I mean, we came in the middle of the night with sleeping bags. Yes we did, most certainly. I picked up I don't know what time of the, and I had to bring my sleeping bag. We was in the room and the parents were, we were going to stay there as long as it took cause people were in at that time, they said people were being injured, died. Uh, they had this one guy that supposed to go to the dentist and they got, the dentist just pulled his teeth. No nothing to knock it out, no, he didn't give him any shot, he didn't give him nothing. The horrible things that pe.., This was the time that the, uh, institutions in Pennsylvania were pretty bad. It was all over the local news. People died, people were hurt, people were, there were no safety guards. I had to build safety guards around our chapter and that was scary including, um, you know, when, when, when, when and then they found that we had, they had kids in institutions and Roland and all of us went to Pine Hill and saw babies in cribs with no, no cover, no nothing, no, oh, he just, that was un, unheard of. That's just, you know, us, Bill West, you know, we, we had enough. We had a lot of strong people, a lot of strong advocates, a lot of strong people behind us, uh, we had Nancy come out. I even had Nancy come down to our chapter meeting and look, we need to protect people. I said I will bring her down here. You guys need to tell stories. We even printed it in our newsletter and it went statewide and I had Nancy Thaler come down and I pleaded with her to come down to our chapter and hear these stories. She was hearing these stories about, you know, what more can I say?

20:34:19:01 - 20:35:19:01 Lisa: Debbie, Nancy came and was very, very invested in your cause. How did other professionals respond to you?

Debbie: Well, Speaking For Ourselves led the way through Roland's speeches, uh, when, uh, Roland, um, and people, most of our members, the majority of our members of Speaking For Ourselves, the majority, I would say 90 maybe 95 or 97% maybe close to 100 been in some type of institution so half of, you know, we were the only game in town. Half of our members, most of our members in different chapters than the local chapters before we even started going out to Pittsburgh and getting Mon Valley into the mix, um, most of the members, the majority of the members in Speaking For Ourselves came from an institution.

20:35:20:04 - 20:36:24:26 Lisa: Did the professionals listen to you when you wanted to close institutions when you demanded?

Debbie: We demanded it. We had people behind us. We had to have the evidence. We had the newsletter. Our newsletter spoke for ourselves. Yeah, I mean, it was more than, we led the way. We, Speaking For Ourselves broke a lot of grounds, um, through Roland and Mark and people before me, um, broke a lot of ground because of where they came from and I never came, I'd never been in an institution but what I've seen and what I've witnessed and what I've gone through with other members, the abuse, the heart ache, the death and God knows whatever happened to Roland. What happened to him in Pennhurst was unthinkable and when I heard that that just started us on another path of stopping the abuse.

20:36:26:06 - 20:37:04:19 Lisa: Debbie, you led a Freedom Committee through Speaking For Ourselves.

Debbie: From Speaking For Ourselves and that was one of the ones and I'm sorry and I think we did that after Roland passed. I don't think he was around, um, yes that was on behalf of Roland. That clearly was his message was free our people, close these institutions down. It was all over the, it was there. There was no if, ands, buts about it and somebody had to take the lead and we did. We took the lead.

20:37:05:03 - 20:40:52:10 Lisa: You took the lead and your lead spread. Can you tell me about the greater impact, the wider impact of the freedom committee?

Debbie: Well, the Freedom Committee started out with me and Speaking For Ourselves and then, um, it just grew on its own, um, then we, um, we dealt with, um, with Mr. Fairchild out in Laurelton or wherever that was when they had, uh, one of the, uh, I can't remember that. I think it was, uh, about 187 Bill, uh, he tried to stop us and, you know, the voice of retarded, you know, who was in charge of that, okay, so it was us against the voice of the retarded, um, and, um, yeah, it started spreading because we figured out how to close it, uh, if we didn't figure out how to close it, we get people out, um, mostly was too close and we dealt with the opposition, um, we had other people besides, you know, we led the way but I can honestly say if it wasn't for other groups like Visions, like, you know, other people that believed in Speaking For Ourselves that knew us from the beginning and knew what we were all about, uh, Bill West, uh, for of folks, um, I mean, we just got together in an office and said, we, our, the final of this committee I had to work on, um, a statement, a mission. You can't start, you can't start any committee without no commission. You have to have a purpose. You had to have a statement so the first thing we had to do is come up with those things. Um, purpose, statement and all that before we can, um, so we worked on that. Purpose and statement on what we were and we went out and did what we had to do. Everybody that was on that committee, um, knew what we were all about and then it spread, um, when we started the, um, the national movement. Mark and Roland and then it really did spread because we started really getting notice about the closure of institutions so other groups around the country, around, uh, we was getting calls from different states, from different places. How did we do it? How did that happen? How, what we did and then when we developed the national movement, um, and that was one of the things that, um, I remember going to a national meeting, um, I wasn't, you know, I was, I helped get it started but then Roland and Mark were on the committees. I let, you know, Nancy was the first co-chair, the first chair, Nancy Ward. I'm sorry, I got to say names, last names. If I remember their last names I will. It's my fault but Nancy Ward was the first chair of the National when they first started.

20:40:52:20 - 20:49:32:20 Lisa: Was there a name for that campaign?

Debbie: Um, Close the Doors campaign and I remember sitting across from the group and, um, we were called in, Mark was already on there but I was called in and I mean, I wasn't on the committee per say, I just helped, I just sat in the wrong place at the right time and, uh, you know, sitting like here and a bunch of folks, uh, I don't know how, if I ever told you how it got started, um, I'm thinking, I'm trying to think of who got us together in Atlanta that really started to getting the self-advocates together and Mark might remember this better than I would. I just remember the names, um, that got us all together. It was, I think it was in Atlanta it started, uh, and I can't remember the person's name but anyway we were around the table with a lot of self-advocates and we were all talking about the same thing and then, and then somebody came up with the idea, the person that got us all together and the name escapes me and I should know it cause he's very well-known. Um, he's the one that gets groups together and work on different things. I can't remember his name. Well, anyway, um, we started talking and he just said, you know what and we were all thinking that. You all need to start a national movement and oh my God, then, um, and we were all thinking like, start a national movement. Are you kidding? Cause we all, it made sense and then we were talking and said oh yeah, okay. And then, uh, as we were talking somebody, um, in the group jumped up and said, well, you know, I'm having, we're having in our state, I don't know if it was Denver or, I think it was Denver was the next movement. Well, anyway this went to states to states, um, and, um, somebody came up and said that they were having a conference and said, well, why don't we start and invited us all and, you know, so we went to this conference and I'm thinking it was Denver but I could be wrong. Roland was around then. That was my worst trip ever. I had a very, that was my worst trip ever. I'll never, it's the worst trip but anyway, um, and, uh, if I'm right it, um, it was Denver and then we started, we had and nobody knew how to get this in there. When they, when they told us that, um, we were going to this conference and trying to fit us in there nobody knew how to get it, what this even would look like, um, had no clue, had no idea and here I'm walking and I don't know which state it was. It might have been but to make a long story short, it went to state to state to state. And then, um, I walk in and I'm already flustered and really having a very bad day cause there's nothing like when you're trying to get yourself together and Roland Johnson is coming in the room and you're not yourself, you're not even all together yet but darned if he came in the room and that was the most, I had a rough time and it was, um, but anyway, I come into this room where I must have been late because I was not, yeah, I actually must have been the last one so I'm sitting in this big old chair, in the middle of the room and had no idea what I was, you know, like everybody else sitting there waiting and I'm saying what is this? Um, well you tell us. I mean, you tell us what. Well, we're all here trying to, uh, I'm sitting in the middle like this is the, well, I'm looking at the chair so I'm saying, you expecting me to start this off? And I'm already having a bad day in Denver. Uh, so we started talking and talking and talking and I don't, you know, and they're first and we, and people was talking about it but then, you know, then it got into the, well, how much is this going to cost? It don't have to cost nothing. If you having an event or whatever it, we need to get it, we need to have a national movement. We all agree what would this look like? Well, money is attached. We got to, I had to get people away from the money cause we haven't even come up with a mission yet. We haven't even come up with, uh, anything. I said no and Roland kept saying, it's not what, you know, what, you know, we need to start talking about what it's going to look like before we talking about any kind of money. What do you want it to look like first? Get some ideas, you know, what do you want out of it? What would it be? You know, so we started throwing around some ideas and something and ideas and ideas and then, like I said, went to state to state and I think the final vote, we ended up going to California, um, for our conference and I believe after all that, um, going to all the conferences and each conference that we went to we worked on it, we worked on it, we worked on it, we worked on it, we worked on it and I can't remember the state exactly, um, and it ended up the final vote, uh, the final tally was at I believe, was in, um, I was going to say California but I could be wrong, um, Denver could have been the last one. Well, anyway either it, either it was in California or Denver. I'm not sure the end of the last stop we made, um, but anyway, Roland, me, Mark was up in the front like sitting right there, in the front row and, you know, uh, and, um, everybody, everybody came up was talking about it and deciding on, you know, how we were going to get this thing started cause Roland came up to and, you know, he had to start it off, you know, he loves the microphone. No way in the world you could get the microphone and Mark kept saying, why don't you get, I said, you must be out of your mind. I am not getting out of this chair and getting that microphone away from Roland Johnson. I said no way. Roland liked the mike uh, he led it off and he really wanted to push this. Uh, you know, to get the crowd going because, you know, uh, as Roland would do, um, because he wanted this national movement. He knew how important it was. He really led it off and then people after Roland, I said, oh my God and we were sitting up there, um, you know, we all said our peace. Um, how important it would be and, but each of the states we went to, to get this thing, I was the lead. I just had to, um, we were always on the agenda but I was the one that led the meetings with Roland and Mark's assistance and everybody else, advisers or whatever but they wanted a self-advocate and I think Roland picked me and talked me into leading the meetings that we had to get this started. So Speaking For Ourselves because of our experiences, um, and since we were one of the oldest groups around we would know how to do this which we didn't know cause we never had a national thing before.

20:49:33:06 - 20:51:53:02 Lisa: Did you have one when you left the conference? When you left the conference did you have a national organization?

Debbie: Yeah, at the end, um, California was the only one that wasn't ready yet, um, I believe. Um, yeah, uh, with the push, push, push, yeah, we did. Um, the votes of the states that wanted and we did. We ended up having a national, I can't remember the years and how we did the states to states. I think, um, you know, Mark would probably remember, might remember more than I would. Um, but yeah, a final vote, um, yes and then, um, they had whenever the next conference was or whatever it was, um, they needed to form a, you know, um, a miss.., you know, they had to form a mission statement on all these things that they wanted the national so we didn't have a name yet. What would the name be? Um, it was just the national movement, um, and I think the next big step was, um, you know, who would be interested in, I think cause we all had to go so, you know, a couple weeks later we needed to decide who was, um, and I know, um, Mark and Roland, um, because we had more experience. They needed Mark's experience. They needed Roland, um, and then the next state that had an event they had the national on there and a set, you know, for them to work out things and they asked Speaking For Ourselves for some guidings in those areas, uh, so Mark was on the board from the beginning. Roland was on there. Nancy, somehow when they figured out how to do the voting process, uh, each of the states too, uh, Nancy, um, Nancy Ward was the first chair and Roland was the co-chair.

Lisa: And what was the name of the organization?

Debbie: Self-advocates Becoming Empowered is now the name.

20:51:53:24 - 20:53:53:00 Lisa: Thank you, Debbie. I'm going to switch gears a little bit if I can? And, uh, ask you some questions maybe a little more personal, um, as opposed to questions about your, your role professionally in Speaking For Ourselves. Um, the more involved you became was Speaking For Ourselves and fighting for other people's independence the more dependent you are becoming personally, I think. Is that a fair statement?

Debbie: Yes.

Lisa: Yeah. Can you tell me, um, about your own, um, struggles to get services here in Philadelphia. Um, I know that you met with the city, um, in an effort to find out what services and supports would be available to you and I wonder if you could maybe tell me about that first meeting.

Debbie:Well, it was a room full of people, um, that I really didn't know, um, my mother was there, uh, and like I said I did not know anybody but then we started, they started talking, you know, um, and I didn't understand it. um, and, you know, and when it was my turn and they were telling me how they do things like having people with slots, you know, that it would, um, and, um, you know, ??? how they did this, how you got in and I spoke up and said no that's not the way I wanted it, uh, cause I was leaving from home so I, you know, uh, that was a hard time as it was. I think, um, me leaving from home, going on my own was the hardest between me and my mother 'cause it was a strain. Um, she didn't want me to go and we had some battles so.

20:53:54:19 - 20:55:44:01 Lisa: Why didn't she want you to go?

Debbie: Um, it, I don't believe it's not her fault. I think me being prepared and she did everything for me so me being on my own I hadn't know how to do things cause my mother and my father did everything so for them to teach me things like you would teach your, uh, son and daughter how to do things that they didn't do on their own, um, cause of my disability, um, they would think I would either hurt myself or, you know, something would happen so, you know, my mother knew that I wasn't prepared and, you know, she didn't teach me how to do that clothes and, you know, and, you know, we went back and forth and, um, you know, I, um, I didn't, you know, I stood firm cause I remember a friend of mine that his mother passed away and how he in a wheelchair just ended up after his mother passed and he called me up one day and he told me his mother passed away, um, and the move that he made was just incredible and all I could think of, I don't want my mother to pass away before she sees me on my own, um, and that's what drove me to be on my own when my friend was talking to me that I met at the UCP.