Chapter Two: Move to Philadelphia and Early Advocacy

15:10:30:23 - 15:12:42:17 Lisa: So, you are a New Yorker. Born in Philly but raised in New York. Um, but eventually you moved back to Philadelphia and I wonder if you can tell me why you moved back to Philadelphia. What were your first impressions of Philadelphia? How was it different from your experience in New York?

Debbie: It's a big difference, um, Philadelphia had more, I found out that, um, you had more things out here for folks with disabilities. Um, in New York is a really big city, um, it was hard to know what, um, I had a lot of friends, uh, to get involved into anything in New York, um, and they didn't have, uh, Paratransit out there yet. Um, when I was growing up in, uh, thank god my father was a bus driver. Um, and my mother told me a lot of things out here as well.

15:12:43:02 - 15:14:03:11 Lisa: What kinds of things did your mother tell you about out here?

Debbie: Well, she did tell me about, um, the transportation out here. It was more easier, um, you know, but I, um, and then, uh, you know, when she told me about, uh, you know, the transportation and, uh, getting around was easier. Uh, I decided to give it a try, uh, but my first concern was, um, making sure my mom gets out of the hospital and doing what I needed to do at the house, uh, to help her recover.

15:14:04:15 - 15:14:55:15 Lisa: Debbie, when you moved to Philadelphia as you said there was a transportation system in place and that can make a big difference in anyone's life. Um, you said it made a big difference in your life, um, I know that it started to allow you to go places like UCP and other types of events and I'm wondering if you can tell me once you have access to transportation, um, how you used it, where you went?

Debbie: Well, that came later. I think, um, what I had to do first was, um, to talk to my dad and tell him that I decided to leave, um, and move to Philly and I had to deal with those things first, um.

15:14:57:10 - 15:15:57:00 Lisa: Were those difficult conversations?

Debbie: Yes, uh, cause I was living with my dad, um, when my mom left or went to Philly. I was still, um, my father got remarried and I ended up with a stepsister and, um, I took care of her when she, until she was like maybe three or four cause my parents worked, I mean my stepmother worked and my father worked so. Um, so that would, that took some adjustment. Um, and then, uh, living with my mom and a new step dad, um, and I needed to know and needed, you know, it took a lot of adjustment at first.

15:15:59:00 - 15:17:37:29 Lisa: When did you start to feel at home in Philadelphia?

Debbie: Um, I guess a couple weeks. We had to deal with, um, you know, getting me signed up on the, um, the Social Security and, um, so there were things that we needed to do first, um, to get me settled but first I had to make sure my mother was settled and dealt with that first before I could get settled in and so my mom had to take me down to get everything transferred and we had to deal with all of that. Those first things so it might have taken a couple months.

Lisa: Once you started feeling more settled, Debbie, and you sort of took care of some of those things, um, did you start meeting people and making friends? Debbie: I, um, and I don't remember when, um, I guess I went to a psychologist to get tested, um, and I was put in, I, they was talking to me about a workshop so somehow I ended up and I don't know how I got to, um, the UCP, um, where Carolyn goes. Uh, I was there.

15:17:40:05 - 15:19:16:01 Lisa: You met some people there that you would I think probably..

Debbie: Exactly, um, that's why I, um, you know, well, before that. I just remembered something before that. Remember when I told you I was trying to go back to school?

Lisa: Um

Debbie: Well, um, my mom tried to get me back into Widener and we tried that and it didn't work out. When I saw my first report card I was very disappointed, um, it was upsetting to me more than it upset my mother, um, and I knew that at that time I, um, you know, that that wasn't the way or, um, you know, um, cause I know I missed a lot of schools out in the years. Uh, so we tried that before, um, and I think that's when I tried that that's when I got tested and everything and, um, somehow I ended up going to a workshop, um, and that's where I met other folks like myself.

15:20:02:03 - 15:23:08:10

Debbie: My workshop teacher was telling us about a real jobs, um, conference at, oh, City Line Avenue. Uh, and I really was excited cause I really wanted to work after my first experience working in the summertime. I don't care what kind of job it was. I just wanted to work, um, so I attended, um, the, um, the workshop, uh, the, our, um, you know, they had to sign us up or whatever and it was a Saturday I believe. Um, and it was on City Line Avenue, the real job at Adam's Mark Hotel. Uh, and I really went into, um, a really, really nice workshop, uh, I, um, you know, and I, uh, met this wonderful and I, um, met this wonderful workshop, uh, and I don't remember his name at the moment, uh, but, um, he was very impressed with me cause he asked me to stay after the workshop cause he wanted to talk to me. Um, I guess he was impressed with the questions I answered and, uh, and things like that and, uh, he was, he said, take a walk with me and then he was telling me about, um, he wanted me to meet two other people and the first person I met was Tom Kramer and, um, I did not know, um, and then Tom asked me, I introduced myself, he introduced himself and he asked me what county I lived in and I didn't know what he meant by county, um, and then he said, all I can say is, um, I'm from Philadelphia and when he said, oh, you're from Philadelphia, um, I wanted you to meet my wife and then he introduced me to Nancy Nowell. Nancy was the advisor of Philadelphia then. I didn't know that, um.

15:23:19:00 - 14:24:19:01 Lisa: What group did she advise, Debbie?

Debbie: Speaking For Ourselves, um, in Philadelphia, um, cause she was telling me, it was brief, it was brief, um, he was telling me about, um, just saying he knew about this group called speaking, um, he told me his wife was an advisor of this group called Speaking For Ourselves, uh, and I didn't know the group, I didn't know anything, um, and, you know, Nancy introduced herself as, you know, Nancy Nowell. Um, and then, um, I, you know, I didn't know, at that time I didn't know, I still didn't know about speaking. I didn't know about the group. I didn't, you know, until I met at the workshop, um, one of the member's, Richard Young and Richard took me to the first Speaking For Ourselves meeting that I went to in Philly.

15:24:19:21 - 15:25:07:09 Lisa: Debbie, I'm wondering if you can tell me about that first Speaking For Ourselves meeting that you attended.

Debbie: Um, I was very scared. Uh, Richard, um, introduced me, uh, you know, um, he brought a new person in which was myself. I didn't, um, know anybody of course. I recognized Nancy, and I believe, um, and I think she remembered me. Um, and Roland Johnson was the president then. Ha, ha.

15:25:07:29 - 15:28:04:20 Lisa: Can you tell me about your first impression of Roland Johnson?

Debbie: Ha, ha. Um, Roland, um, he welcomed, you know, he is very, it was scared at one time because he asked us to introduce ourselves and I was very shy still. Um, you know, and, um, you know, I introduced myself, uh, and, um, Roland was, was a leader. It's amazing how, I mean, we had a pretty good size group, I believe and he, uh, he led, um, like a leader is, uh, and I felt very, very welcomed by him. He somehow figured out how to make me feel welcomed and involved. Um, I also threw out a lot of good questions, um, about, and when I started to learn how to speak, speak up what I had to say, uh, he, you know, was very impressed by it. Um, cause when it was time to ask questions, I asked a lot of questions about the group, um, and do they have a brochure and things that, and, you know, the questions that I asked he felt, um, and the group itself felt, well, I'm very impressed. This girl has a lot to, um, you know, and from that first meeting I think I found my calling. Uh, cause I was involved with meeting other people like myself cause I didn't think there were other groups out there or people in an organization of, you know, people like myself, um, and in a group like this, like Speaking For Ourselves and what Speaking For Ourselves stood for. Um, and I figured out my calling I think. I should say Roland figured it out for me before I did. He really did.

15:28:05:00 - 15:29:40:05 Lisa: I've heard that Roland was quite a presence particularly when he had a microphone.

Debbie: Ha, ha. Yes. He would hold it like this and yes.

Lisa: What was it like to be hearing Roland speak?

Debbie: I'll put it this way. Um, put Gandhi, Martin Luther King and all the great leaders you could think of in one big row and sit them up there and just love to, uh, and what Roland had to say was very important. It was right on target. Uh, in a way was very, very, um, and people, he, um, and he had somehow had the room and people listened to him and heard what he had to say and they respected him for it. They, they actually, I mean, they actually listened to, they actually paid him attention but he knew how to work the room especially if somebody was shy or people that and always looked out for folks with disabilities and made sure that even if they weren't in the audience somehow someway he figured how to make them feel comfortable and also to speak up for the first time and I've never seen anything like that.

15:29:40:06 - 15:31:27:20 Lisa: Why do people listen to Roland, Debbie?

Debbie: I think what Roland had to say were very important, um, and, and I think he was already respected, I mean Speaking For Ourselves has been around since 82' so they were around before I was even, I even came into the organization. So, you know, they were very well-known, they were popular, I mean, and Roland, you know, spoke truth, said what he thought and be respected, um, and I think people, um, you know, knew he was right and he stood by as words. It's not just words. Roland was the type that stood by everything he said. He put it in action as well as made anybody else up that they should of, you know, he was proactive. Uh, he was, you know, things that he came up and thought of and, uh, who's in charge. He made that happen. Uh..

15:31:28:22 - 15:34:37:08 Lisa: Debbie, what was his main message? What was the main message he was trying to get out there to folks? Maybe there's more than one?

Debbie: There is, uh, of course Roland was in Pennhurst, um, and his main message is, is to free our people, um, and that, uh, the one that sticks to everybody's mind is who's in charge. That actually came from Roland and Everyday Life concept even though he might not have been around for some of that, that actually came from Roland. He challenged the first, when we first did this he said, when that, when folks didn't bring people to the conferences, um, professionals, he challenged everybody in that room that the next year I want to see self-advocates at this conference and believe it or not the next year it happened. Everybody brought self-advocates to the conference. I've never seen that happen before and I asked Roland to teach me. To be my mentor to teach me. I actually, we took cabs. He had to know my family, he likes the Phillies, uh, you know, he did a good Darrell Dean. I wish I could've caught him on tape on Darrell Dean. He, yes it was delirious. I wish I had videotape. If I find it I will show it to you. It's just so delirious. Um, but he, he stood up for his members, people with disabilities. If anything, anything happened to them they had to answer to Roland and I wouldn't of wanted to be in anybody's shoes when that happened because he was the type of person that made things happen and anything that, and loved kids. Oh my God, um, he loved kids, uh, anything, anything that he heard that happened to any person with a disability, it was some action and how, how he, uh, you know, that's when I got into this institution stuff. I think, um, uh, because of Roland. Um, and he wanted us to do that. That was his main thing cause he came from Pennhurst.

15:35:08:16 - 15:36:52:01 Lisa: So, of all the many lessons you learned from your mentor, what stays with you the most? Maybe, what are some of the most important lessons you learned from Roland?

Debbie: Uh, I believe I learned, um, that you can do anything if you put your mind to it, um, or like who's in charge, um, and how much freedom was, uh, when I first learned about institutions cause Roland and Mark took me around, um, my first couple of months in Speaking For Ourselves, uh, to see what Pennhurst was about and told me and we were riding around in the grounds, around the grounds. I had no idea but Roland was in the backseat and he lived in this place. He lived in that but yet for him to have the courage to go back there when it closed and I was in the front seat and he was in the backseat and Mark was driving and to ride around in Pennhurst, outside of Pennhurst and to listen to what Roland had to say, that took a lot of courage.

15:36:53:23 - 15:39:48:20 Lisa: Debbie, you, we'll talk a little bit more about that work cause it's important but while you were not in an institution yourself in your childhood, when you are at Speaking For Ourselves I'm sure you heard so many stories from members particularly given the fact that Roland was encouraging people to speak out about stories of their own experiences in institutions and I wonder how that impacted you to hear all the stories of your friends and co-members, um, having these?

Debbie: Well, it's interesting that you say that because my first year at, um, my first time being president in the 1990's, um, it was six months after Roland decided not to run, I became the president of Philadelphia and first woman president so he threw me up the ranks really quick like. So I, I was faced with a lot of folks that was, a lot of our members that came to the chapter was in institutions and my first year I was faced with the abused. I saw it when they came to the chapter meeting. My members challenged me. They came to us telling us things and told us to come to see them and to get them out and what I saw and, um, you know, one of the members just stood out and said come, um, come to visit me and that's when we went to this institution. Um, and, you know, and also to work on getting, I also told them that we need to get your story out. We need to get, your story need to be told but we had to figure out a way to be safe. How to do that, I, we, we had to protect the members. Um, by them telling their stories and there were some horror stories. When we did our first newsletter, the Speaking For Ourselves newsletter, uh, all I could, between anger and being, I was blown away. I, my emotions, um, and, you know, thank God Roland was still teaching me then. You had to put this in check.

15:39:49:08 - 15:46:23:06 Lisa: Debbie, you said you wanted to keep some of the, wanted to be sure your members were safe when they were telling stories. What do you mean by that?

Debbie: Well, when the members started feeling comfortable telling us things, I mean horrible things. Things that were still going on, um, we needed to figure out a way for them to tell it and for us to write it and we knew the consequences and we let them know there would be consequences if we did write this and I had to get, um, Roland and speaking, I mean they knew Nancy Thaler, people, um, that the folks will not be, we had to, um, first of all we had to go down there. We had to give them some kind of guarantee. We had to get permission, we had to get permission. Um, we kept on top of it, um, going down to this institution on a regular basis. We had to get, uh, Judy Gran involved. There was a whole lot of things that I didn't know we needed to put in friends of the court. We had to figure out ways, we had to call in some, uh, some help and Roland and speaking knew a lot of people, I didn't. Uh, so we had to figure out, you know, so we called in a lot of the supports that, Judy Gran, uh, Bill West, um, so we needed to but also go down there on a regular basis to make sure and report stuff but when we found out, when Roland found out one night that no one has been down there, this one particular institution in a couple of years and we had I believe, um, Judy Gran was there, I was there, Mark was there and I'm not remembering who else and I know Roland was there and there were babies in there. I've never seen babies in an institution in my lifetime. I, I walked in there, I, that took me out. And with Roland being in there too and saw a kid get hit, um, how in the world he got people from the state, Steve Eidelman on the phone the next thing I know we are meeting with all these people, head of Harrisburg and I don't know how he, he got this big meeting together and we just, they talked around it and I believe Steve was around then, um, yeah Steve was cause I, he was the first time I met Steve Eidelman. Uh, and I was in the front. All I, all I could, I couldn't and we all, all three of us that was there, Mark, me and Roland said we went to this institution and found out that he hasn't been down there in two or three years. It flipped him out. I couldn't say anything. All I was, I was in tears. I was sitting there crying still, uh, because we went at night, we went at night and they were talking all this stuff. I said, we, Roland just went off on these people and said now Steve, you know, now, I mean, he just took it over and Mark and I was just, I mean, we told our story but Roland wasn't going to hear it. People got run out. I want you, you to come down here to see what we saw. He just like told them. Me, I was just, the only thing I could do was say I was the first, you know, and turn my head and they just saw me in, they did was want to know why I was crying. I said, the only thing I can say is what I saw. I was in tears. You folks have to come down here every and what Roland ended up doing and Mark ended up doing, every single person there, every single day they were going to go down there and every week, every couple of days we'd come back and report and when that started happen everybody witnessed the same thing we did. Saw it, heard it, you know, we had a commitment from everybody on the state, everybody that, everybody in the room, people I don't even know committed because of what Roland and Mark and I witnessed, um, and they went down there every day. They had to send their staff down there to see what was going on, to hear, it was remarkable. I've never seen anybody could move a whole room and say you got to get down there, you got to get down there today. Tomorrow they could be all dead. It, I've never seen a room move like that and every day staff went down there, though they sent whoever from their, um, but everybody went to this institution, um, we, every day had somebody down there to make sure our members, we gave them a list of our members. We said, now they, they're our members. They need protection. They come into our chapter meeting abused up. This is, this is, this is not going to fly especially with Roland and Mark. We just decided to, um, they needed protection. We needed to get protection for these folks. PP&A, we had all the, it was something.

15:46:23:15 - 15:47:51:11 Lisa: So Debbie, I want to clarify a couple of points if I can because what you're talking about is so very important, so very important to the history of this movement. Um, you talked about keeping people safe so I just wanted to clarify. Are you saying that some of the members of Speaking For Ourselves were in, were residing in institutions while they were members of Speaking For Ourselves?

Debbie: There were, they were living, they were living in institutions and this one particular one, most of our members came from. Um, it was in the Northeast, it used to be called Pine Hill but it's changed now. That's the first one I've ever been at, that I was asked to be at, um, and Roland was still, you know, in speaking, um, you know, I was being, he was mentoring me, helping me with my presidency but, um, most of them, um, came from that one, uh, and we were requested, um, by one that was very outspoken and the rest followed and then we came to visit, you know, and that was the, actually that was my first one. Me personally, myself, that was my first ever one that I've ever walked in, seen anything like that.

15:47:51:27 - 15:49:03:20 Lisa: So, you as the president certainly of Speaking For Ourselves, Roland, um, and his ongoing role, Mark Friedman as an advisor were challenged by the members and by Roland himself to visit institutions and see what conditions were like in Pine Hill.

Debbie: Right. Yeah. Roland been in a institutions and witnessed all of those things that I've never have, uh, as the president of a chapter, um, that, um, you know, Roland gave me the, uh, the role of taking over that, what, with him being there, yes, uh, that's why I said when I was the, um, president of the Philadelphia chapter in the 90's I believe, uh, that was my first, um, my first one.

15:49:04:01 - 15:51:12:01 Lisa: And Debbie, describe to me that first visit, when you first went to Pine Hill.

Debbie: I was stunned, I was stunned, I was dumbfounded and I've never seen anything like it in my life. I, I couldn't, there was no words you could say besides the smell in there. It made me sick. I've never seen anything like it. You know, and, you know, Judy Gran asked us to be friends of the courts, um, you know, we took on someone to visit every time. Be it an advocate whatever we needed to be or whatever that person needed to help get the folks out of there and hope to close down and not have the children, um, we worked on getting, uh, no condition for children to be there, they were kids, babies in cribs with nothing on in the middle, I don't know what time we got there but it was to me it was in the evening and to see stuff like that, I, I was really but, um, you know, Judy Gran was there with us. We was trying to calm down Roland, he really just saw it and, uh, somehow he got on the phone and the next thing I know we are meeting with Steve Eidelman and company. Ha, ha. I have no idea, he just somehow got them, woke them up and sometimes he tells this story how he got the call and we met with him and it just, uh, huh. That's what I meant that he was, he, proactive. That was, I've never seen anything like it.

15:51:12:17 - Lisa: Now Debbie, you were given, um, you as president of Speaking For Ourselves, the organization was given a grant by the office of developmental programs when Nancy Thaler was the deputy secretary, I believe to visit institutions across the state and so I wondered if you could tell me a little bit about getting that grant and what you are charged to do.

Debbie: Well, what I, what I, well, Speaking For Ourselves was meant to do was to go visit statewide grant, um, and visit all these institutions and, um, to, um, and see for ourselves who probably wanted to get out, um, and but we also had to be very careful, um, uh, and what we saw and reporting it but, um, because, uh, we, when we, um, and this was, um, also, uh, we also had to put a lot of travel time in it. Um, we also had to do a lot of preparing, um, cause of what we had to see and what we could, you know, um, so it was a team of us so we broke up in teams, uh, and, um, uh, that was, um, because we told Nancy that we wanted to get, um, people out and we know folks wanted to get out, uh, and because Speaking For Ourselves was an advocacy and also, um, we wanted to let people know what was out there or just hear what they had to say, um, because we did a newsletter also on the institutions. Um, so, and, um, uh, you know, and also, uh, let them know that who we were in the process so if anybody wanted to get out, um, and also building the chapters as well, um, in the five areas, uh, and, um, and cause we, um, we really wanted to, um, let people know if they wanted to get out that there were, uh, other choices but basically just to see, um, and hear from the members themselves. Um, we didn't believe the people didn't want to just get out. We knew that, um, you know, nobody really asked what they wanted or what, you know, and basically what I did was basically listen and, you know, and we had to figure out if we saw certain things how, um, we were supposed to report those things without getting the person into some trouble or punished. Um, and no one has ever done it, um, but we also had to get permission from the head of the institutions as well because they had to set up the visits for folks to take us around.

15:56:41:12 - 15:58:44:01 Lisa: I wondered if you could tell me some of the other state people who were involved in those efforts or advocates.

Debbie: Well, Speaking For Ourselves was the lead, um, and we also involved, uh, all the state directors that, um, that was in charge of the institutions cause they set up the visits and who was supposed to be taking us around, um, and, um, I was going to say I think, uh, Bill West was back then and also, um, I'm not sure besides those, you know, um, I know Bill West and maybe, um, Judy Gran was always involved in stuff, in our stuff as well but since the grant was from speaking, we basically and a lot of our members, uh, as I said we broke up in teams. We had to stay overnight, uh, we also had to prepare like I said and have team meetings so people can, so we needed to be prepared, uh, cause of what we were going to see, um, our, um, you know, walking in stuff, in people's homes and, uh, seeing things and, uh, that affected all of us in a different way as well, um.

15:58:44:08 - 16:01:25:26 Lisa: How did it affect you, Debbie?

Debbie: Uh, it affect me but, um, as the folks that I met and, you know, in wondering how they even got in the institutions cause some of them were very intelligent like a man could talk just like you and I. Uh, and, um, it was nothing, there were nothing wrong. I could not understand, you know, being, I guess cause I've never been in one but how, you know, how it came to be. Um, and, you know, some folks, you know, came up to me and said, how could you come home, go home and I have to stay here or they would come up with comments and it affects you. Um, you know, um, it's almost like being on the other side of the tracks, walking in my shoes. That's what I would never have walking, just imagine, um, what happened to Roland in Pennhurst. I can never walk in his shoes, uh, or anybody else's. Uh, you know, we try to do is make people's lives better and let them know the things out there or hear their side of the stories, uh, because over time we came up with this other thing, um, to spread the word and get, um, we did another grant in getting people stories, only institution stories because their stories are never heard. Not the way they want to tell it. I mean we hear stories, what professionals say about problems with all their families but have we ever actually heard it from their mouths in their ways.