Chapter Three: Freedom Committee and Roland Johnson

16:01:27:01 - 16:08:27:15 Lisa: Debbie, when you were the president of Speaking For Ourselves you led a freedom committee.

Debbie: The freedom committee, um, came because of Roland and that was another step of, um, getting connected, staying connected with the institutions and the main purpose. Um, Roland, one of his main goals and he's always said it and it stuck to everybody's mind that knew him. Free my people. I want institutions closed, every single one. He made that loud and clear in different ways. Um, and so to continue his memory, um, I, you know, after I was, um, I believe and I'm not sure, um, when we started the freedom committee was a while ago. I'm thinking it happened after Roland passed or around that time and what happened was it came out after he passed and then I was invited to a very special, um, memorial. His family, only family can go. At first I was the only one invited and Mark, um, and my mother was invited to the hospital. I was the only member that was invited to the hospital. I couldn't go in the room when he got hurt and the house got burned. Um, I, I just couldn't bring myself but I, by family, the family wanted me there every single day and until after he passed I was also invited, um, to a special memorial, a family, um, only the family, um, usually are invited to this, um, it's a family memorial, kind of personal and I've never been invited to one of them before. Only the family go to them. You're not, it's not open to outsiders or anything like that but only a few of us like Carol Nettleton was there. Uh, you know, and somehow, um, I don't know, I remember I was still living on my own and I don't know, somebody came and got me, um, and I was asked and I really did not, I was doing something and I was asked to go to this, you know, Roland, I really didn't want to cause I had to grieve my own way. I was asked to by family to come to this, the family private memorial service or, um, private, um, as private as could be and being the only member that I can remember being there, me and Mark, I think mark was there. I know Carol was there. I, I know cause she was sitting next to me. I didn't know but one of the things when you asked me what stood my mind, I just remembered. Before Roland passed he said the most strangest thing to me and I'm surprised I forgot about it cause just thinking about it is significant. He said Debbie, he said to me one day you're going to take over speaking, you know, I, I won't be there, I won't be here when you, you know, you're welcome to take over for me, uh, like passing the torch, I'm passing the torch to you. I see that you're going, I'm going to, you know, you're going to be, um, be the president of Speaking For Ourselves and run Speaking For Ourselves and I had no idea what he meant or what he talked about, what he saw. He saw this in a, like a Martin Luther King dream. Uh, I have a dream kind of thing and he said it, I have a dream that I'm going to, you know, like he was, he knew something was happening and, and almost saying I'm passing the torch to you and exactly that day, that one perfect, one, um, the families memorial, um, probably the Memorial service for Roland as I think I was getting ready to leave or walking up, Laverne stopped me right in the middle and gave me this white thing and only thing she said, she handed it, she said, my brothers wish was for me to pass this torch to you. And I looked at her and said what do you mean he passed the torch? He told me to pass this on to you. So actually he passed the torch on to me to continue his work, to fight for folks, to advocate, do what Speaking For Ourselves was meant to do. Get people out of institutions, um, to have, to teach them, have the control of their life, who's in control? He said that in all his speeches and, and he always said we're in control, we're in control. We always said who's in control? You are and, and he had a whole audience say that and that goes on and on and on.

16:08:28:23 - 16:11:06:29 Lisa: Debbie, when Roland passed the torch on to you. Um, after he passed did you feel ready and able to pick up the torch and lead the organization?

Debbie: No. I was in, I was, I was a total wreck, I was, uh, I'm one of the ones that took it the hardest of anybody else. I couldn't go into the boardroom. I couldn't, anything, any place that Roland was at, I couldn't walk in the room. I couldn't walk into our office. I, it was hard, it took a long time for me to, uh, get over Roland's death. You know, I had the family and sisters' support and Speaking's support, we were all grieving and Mark took it very hard, very hard. Nancy, the kids, uh, cause he always stayed at Nancy's house on the weekends, playing with the kids when they were small. Nancy used to take him to church. Mark took him to church, spent the night over at his house. Uh, so we all took it hard. We even grew a tree at one of the farms that we were at, um, that we used to go to on our retreats, um, Fellowship Farm. We grew a tree right there for Roland. Um, we planted a tree and I was totally wiped out. I was..

16:11:07:12 - 16:11:38:18 Lisa: So what made you go back to the organization?

Debbie: Well, I was in there, I was just grieving. I couldn't just walk into the room yet. I couldn't do anything else but I just where, I remember Roland places where Roland were, was when Roland, um, those are the places I had a hard time going into. Um

16:11:39:03 - 16:13:31:00 Lisa: So, when did you feel that you could pick up the torch again?

Debbie: I think, um, when Karl Williams and the national group as I didn't, I forgot to tell you that Roland and speaking house started self-advocacy becoming empowered. Roland and Nancy Ward did it together. Roland was the co-chair. Roland pushed that national. Was very involved in the nationals Self-Advocates Becoming Empowered so that was his family too. Uh, actually we were the first ones, Speaking For Ourselves with the Freedom March. We were the only group in the nation that had an, that started closing down institutions and the states figured out, um, looked at, for us to help. How we did it, um, how we started the Freedom March, uh, because we were the only ones that figured out how to close down institutions and we did it. Not every one but, you know, and it went on statewide. That was Roland's doing.

16:13:31:01 - 16:19:44:20 Lisa: Would you say that that was, that closing institutions was Roland's legacy, Debbie?

Debbie: Yes, but and when we, when Karl, when, I guess when Karl Williams with near-death and I helped him come back into his songs, remember Roland liked to sing and we came up with the song for Roland. I think that healed us, a lot of us that really knew him. I think it, you know, with the Roland song that helped out a lot and we made a tape, Karl Williams helped us, he helped with songs, with the national songs and speaking songs. I think that, um, helped us a lot, at least helped me and with a lot of support from my family cause my family loved Roland to especially my mother. She adored Roland. We used to have him, she used to have him over to the house all the time for dinners or whatever before we had Paratransit going out to Plymouth, we always took cabs. We always took, we found a cab guy. Roland and I took a cab every time. We were always, but he was always, he always involved us, Roland and my family. My brothers knew him especially like I said my mother adored Roland. She respected him, you know, she reminds me if I gets off track she reminds me sometimes of what, you know, what Roland would do in these cases or situations cause she knew him, she knew him. We always went over to his house when he had a roommate even his new house when he was in Ken Crest. You know, and so I had to go on, I had to, uh, I had to figure it out. He just didn't give the torch to me, he gave it to speaking. It's not mine it's the whole organization and I'm trying to, um, live up to his, what we were all about and what he wanted and the mission or his mission, Everyday Lives, who's in control and, uh, and people out of institutions. So actually we're the groups that started the closures in freedom committee, in Freedom Marches, we had a national Freedom March. We started that. We were the first ones to do a Freedom March and involving everybody and then he got to be well-known. One year we decided to do a national march and everybody marched on the same day in all 50 states. You know, and the national self-advocates becoming empowered, they're going strong and I know that, you know, I helped get the ball rolling in the different states by sitting right like ahead and having a discussion on how we should do this but Roland honestly led the way, uh, through the strength of Roland, Roland and his family cause they're part of this whole thing. His family didn't know Roland and that concept. They had no idea what he did, they didn't. We came up with a tape and gave it to the family. They was in shock that their brothers did all these wonderful things and his family did not know. None of his family knew the great man of Roland and what he could've been. He never shared that with his family and that's the sad part but at least I'll always have the memories and the legacy for me to share these stories about Roland's life to people that don't know him. Don't, had that experience like we did and I'm glad Nancy's around. Nancy's still is out there marching, sharing these kinds of stories, telling the story about Roland, keeping the work around, alive. He, it's not just me and not just speaking, everybody, Temple as well. Celia {Feinstein} you know, everybody that knew him, he gave it to all of us to be in charge to do the right thing.

16:19:44:26 - 16:21:55:02 Lisa: Do you think the young generation of up-and-coming advocates knows enough or should know about Roland?

Debbie: Yes, that's why I'm sorry you missed the play. We were hoping to try to get it, a movie deal done. I'm sorry I, the gentleman that's playing Roland wanted to interview me, to ask me about Roland and it just, the days just never worked out but..

Lisa: Are you using the plays and interviews to keep Roland's story alive?

Debbie: Yeah because people, there are people that didn't, don't know. There's a lot of our members that don't know Roland. They didn't meet Roland, they didn't and the only thing I have is maybe some videotapes or the stories I told, you know, Octavia is not around anymore. She's passed on. It would've been lovely to get her story. Nobody thought about her story. She knew Roland. You know, she was his, uh, vice president of the board. Um, or Jerome Inuzzi who was very close and also from Pennhurst, passed on, that knew Roland. Um, but if, you know, and that's why we're trying to get these pieces together and hopefully, um, I can find some of that and play it for our members or that's why I'm glad the book is out there for students and is, you know, people are calling to ask for Roland's book, uh, getting it into the schools, getting it into the colleges.

16:23:44:00 - 16:25:47:01 Lisa: Debbie, you were talking about Roland's legacy, um, certainly his legacy was closing institutions, the freedom march but another part of his legacy, um, was his openness about his, um, HIV and I wondered if you could talk to us about that and what it meant to, um, people with disabilities.

Debbie: Well, I mean, when I heard, when I heard about it, um, Roland didn't come out to tell, tell me about it. I was going through therapy then, um, when I was seeing Carol Nettleton, um, I didn't even know until my, one of my appointments with Carol Nettleton um, cause Roland has asked her to talk to me, to tell me so my, um, my appointment, um, she, um, she told me in her office and I, um, I was in shock and then I totally cried too, I didn't know what, I was between angry, I didn't even know about HIV and I was in shock. I was speechless. There was a blank face, I was like, you did not just tell me this. I was in shock.

16:25:47:22 - 16:30:17:16 Lisa: Did you ask Roland about it?

Debbie: No, actually no. The reason being is because when she told me there was a reason why she told me. This is when, uh, Roland, this was a special request from Roland but when she said that if I, you know, Roland asked me to tell you this and he wanted you to be part of his personal circle. Um, you know, and what would that look like? So I had two things to think about. It wasn't like, I was honored at first and then I was in, um, I was in, I was in shock and him asking me, um, you know, to be part of his life and I asked Carol why. I didn't know how to talk to Roland after I found out this news. I didn't know, you know, first of all I had to accept it, you know, she asked me, could I accept Roland after finding out he has HIV? And I guess I didn't know what HIV was or she had to tell me, um, and also, you know, to be part of Roland's life in some way and I was honored and the only thing I can say that Carol was why me? How did I get chosen or how did this ever ha..., you know, like I can remember a person with a disability. I knew Roland a little bit but I didn't know him in that, I couldn't get around how, it was like I kept saying something is up, something don't feel right. I didn't know the reason why, um, because there were other folks, um, and very few of us, we were all involved in Roland's life in different ways but I was like the only member that I can think of involved in that way. In a way that everybody else was. Uh, we're talking about a person's personal life, um, so a lot of other questions came to my mind and I agreed. I asked Carol what would this look like, what, how, I mean, yes, I accept to be part of Roland's life even if he has HIV. Um, she suggested for me to go to classes to learn about it, to know what it is, how, what, you know, so I could, you know, when they, when they, you know, when they had come out with it they, um, HIV trainings or, you know, get us prepared for it. Um, yes, I agreed to it. I took on, I agreed and I took care, I agreed to be his friend or a part of his circle, um, you know, and it was just strange being, uh, part of a circle and me going to his first circle meeting, um, in, in circle.

16:30:17:13 - 16:32:30:20 Lisa: What did Roland do, Debbie in terms of sharing his own experience with HIV with Speaking For Ourselves and their members?

Well, some, I'm trying to think of it, um, when Roland and, um, I'm pretty sure knowing in how close he was with Carol Nettleton, I mean, she took all the care of him, um, medical stuff and all the other stuff. Uh, I had to work this out through the therapist probably on how he would, you know, and, you know, he just one day and I don't remember what year was or, you know, and I, everybody was in shock and angry cause he was in Pennhurst. This happened to him in Pennhurst. It, you know, and, you know, it's still one of his stories and he was interviewed by 60 Minutes and all that. It's on his story, um, we, I mean, we all, we, I, we all dealt with it in different ways and I think, you know, like Mark and Nancy and those guys. I think folks knew before I did. I came in later. His circle was already, I believe it was already developed and maybe Celia [Feinstein] was but I think Celia was part of his circle as well so I came in later, um, I was just added, I was just added to it.

16:32:24:20 - 16:36:32:11 Lisa: Debbie, did he tell members of Speaking For Ourselves?

Debbie: Well, he told us I believe Mark and them had some idea but it, um, it came out gradually but it came out in the wrong way of, you know, and we loved Roland so much and when he told us how it happened I remember him going on the stage just out right and just, you know, in one of his speeches and the room was in, you know, we all, it was in more shocked that Roland come out and said something like that and more brave than anybody they ever met. I think it was the most bravest thing I have ever seen anybody, uh, eventually and I think it was worked on overtime of how he was going to do it. Um, and we, we loved Roland. We started hearing about these institutions and what happened and I think how it happened to him, that's what really got people in love with Roland and what it does and it did for this man. I don't even, we had to learn about HIV and go through the but he opened the door for folks that had it and didn't tell it and that took a lot of guts but we love Roland. We saw him as, you know, Roland. We didn't see anything different about him. We just didn't, we just didn't know that this happened to him and when he told that, how it happened to him everybody was angry about it and that's what got into us doing the things that he really wanted was the institutions, making folks have control of their lives. He lived an independent life he wanted, have his own house, his cats, his dream house and he wanted everybody to have the same thing. And we all wanted that too for other folks but I think because of Roland the way he was and the man he is for him to take the lead on something like that opened the door for others and we all had to go through trainings and we all had to accept, we all had to make the decision to be part of Roland's life or not. Everybody that was involved in Roland's life like myself and folks you might be interviewing, um, we had to make that decision for ourselves. To decide if we wanted to be and when it came out to stick with him, to be, to still support him even when it came out and give him the support that he needed. We all had to make that decision, everybody that was part of his life and in, in or out. A big circle, the small circle had to make that decision for themselves.

16:36:59:17 - 16:40:18:18 Lisa: Um, as Roland's health deteriorated, I know or I understand that he had to give up many of the responsibilities at Speaking For Ourselves, um, that he was used to and I wonder if you can remember what that was like for him?

Debbie: Well, we, um, as an organization, um, we had to make some deci...not make the decisions, it just, we had to change things without him feeling that less important on a fly. Um, uh, we wanted to and we didn't do anything without Roland's being there so he was there. He knew it was, you know, he actually, um, had wanted to back down some. We knew Roland was still part of Speaking so we worked around it, we really did. It, I, um, we really worked around it, uh, develop a no, um, we developed a, uh, a different role for him. Uh, but still an important role not, you know, uh, he still was always at the head of the table. We never took that away from him. Um, you know, and we talked to him, um, what would that look like, what, I mean, like what would you want when he decided that he wanted to pass it I believe to, um, Octavia so when that discussion happened, uh, we wanted to know from Roland and I was always on his right or his left so no matter what happened Debbie was, my role was to sit next to Roland at any, um, meeting, whatever the case may be. I was either on his right or the left so I was there but not take, not to, you know, when I saw things changing then I could say something to him or, you know, look at Roland and say, um, can I help a little bit or say something to him so that way I could help whatever he was trying to say or whatever he wanted, you know, I was there and one of us was there, um, but, uh, we developed, uh, you know, a different role for him on the board. Um, important to him and he accepted it but he still felt that's still important, uh, so it was a different role, yes, um.

16:40:18:29 - 16:41:19:20 Lisa: Interesting for you, the roles changed. He was your mentor.

Debbie: Yes.

Lisa: And towards the end of his life you were his support.

Debbie: Yes, in Roland's way. You know, all until a point. You know, we were all there though. Uh, we, because we had meetings, we had team meetings, uh, so we could be prepared. Circle itself, we had meetings that maybe Nancy's house or whoever's house. We, especially when he had traveled together or we had an event. There were, you know, the episode that happened in Canada. I can, it was like it happened yesterday and so that was a very scary thing. And I haven't even told that story yet.

16:41:20:27 - 16:42:12:11 Lisa: Well, maybe we'll come back to that story but since we only have just a couple of minutes left in this particular conversation, um, is there any thought you'd like to leave us with about what Roland meant to you? You've spoken about him very eloquently but maybe there's something you'd like to say in summary.

Debbie: Uh, one word I can say is Roland was my hero of the disability movement along with Justin but he helped me with my family support and I love my family dearly. Um, develop who and what I become, um, I'm just very lucky.

Lisa: Okay, thanks. We'll stop there for tonight, okay.