12/9/87 WHYY-FM Philadelphia: Interview with Marty Moss Cohane
March 3,1993 Workshop: "HIV/AIDS at "Everyday Lives" state-wide Conference
May, 1993 Speaking For Ourselves Annual Conference Delaware County Community College, Pennsylvania
Third International People First Conference Toronto 6/93
RJ:...I think back in them days that they didn't have no kind of choice what to do with their child. Years ago they said that these people are not fit for society. "Get them away from us because they would try to harm us and what should we do with them." But is it always going to be putting them back in an institution, put them down, or put a label on them or something? I feel that should not be. I keep thinking like that. Now things are changing. But not much. We're working on it; we're working towards it. Speaking For Ourselves, the organization I'm involved with... I can just only touch on this... Speaking For Ourselves is involved with a lot of closing down of Pennhurst. Speaking For Ourselves has been a private, un-profit organization that's been in the system for five years. We just went through our five years anniversary this year. It has been talking about people, cursumers, don't need to be put into an institution. And at conferences that we been to, they don't want to take the label off of mental retardation. And I feel that Speaking For Ourselves is a strong will power to try to look at this thing. With the human services and the help of the people in general as a whole. We're all into this together. We need to look at this more strongly. And work together as aunit. To change ideas. The way that people see us. Not the way they see us from years back. Look up from now. Are we going to continue working and living as people put us down that we aren't not fit for the outside? I don't think so. We have come this far. Why should we go back? I feel that we have came through a very strong little test. I think it's a testing for us. How long can it go on? How long until the mental retarded and disabled can be left out in the community for services?
MMC: I think that many people on the outside think of institutions closing, and then they think of street people. They think of people living on vents or in parks and having no place to go. When we hear about the closing of a place like Pennhurst, I suppose the idea is that people will just be roaming and not be able to take care of themselves. And then the fear that they would hurt themselves or somebody else then rises to the top. But you live in an apartment and you have a roommate and you have someone who checks in on you about once a week to see how things are going.
RJ: Right. A team or the county office or the group where you're staying makes the decisions. That's made up of individuals. If maybe there's something going wrong there - someone couldn't get along with his roommate or something - then a change has to be made, to be placed somewhere else. MMC: What do your neighbors think of you? Do you have much contact?
RJ: I wish we did have a lot of contacts with our neighbors. But our neighbors don't even know that we're there hardly.
MMC: Well you're working...
RJ: One neighbor who lives upstairs from us, she said, "Well we don't hear no noise, no racket." I play my radio or TV. It's just like a normal person. You're just a normal person like anybody else.
MMC: The reason I ask is that I think a lot of people have a lot of crazy ideas about living next to someone who's different from themselves.
RJ: Oh they do. They think, "What's he doing out here by himself instead of being monitored? Because we got kids around, we got children around. What's going to happen to our children? Is he going to hurt them?" This is what 'volves. This is what happens. But I don't think that's going to happen by the help and strength of the people, by sharing and caring with support each other. And I think that with staff, what I mean, not staff there all the time... But with minimum supervision, not there all the time to tell us what to do, but just keep an eye, close eye on you and come and check perialically. If things are going on all right, they don't need to be there. Because they got a lot of other people that needs more services than others. And I think that by giving the person that can do things for themself just a little assistance, and give it to someone else who might be more quote mentally retarded. You hear on radio talk shows that people sleeping out on the streets. In the back of my mind I'm wondering - is there services there for them also? We want to correct that confusion. MMC: I think you raise a really good point which is that people just don't understand the distinctions between different groups and the kinds of problems perhaps people might have. It sounds like what you're saying is that the street people really kind of cast a bad shadow on you and people like you who are working.
RJ: We want to make sure that we are not the only ones is benefitting by it and getting all these services and they are not getting services - the blind, the disabled.
MMC: I regret to say that we're out of time and I feel like we've just gotten going, but I do thank you so much for talking with us today.
RJ: I thank you for being here. It's a pleasure.
March, 1993 2 Workshops for Self-Advocates "Everyday Lives" - Annual state-wide Conference in Hershey, PA sponsored by the Commonwealth of Pennsylvania FINDING A VOICE
Finding a voice is to me is finding somebody that is going to really speak up for people with disabilities and with handicaps; who serves the system; who is in the system; and who will come to be for working in the behalf of starting a group around the world.
What it is to me: finding a voice is to make things happen; make things really happen, that it is going to happen with people with disabilities.
...Not to be shy. We want to know - how can we help you to get what you want from us and what we want from you. We want you to talk up - please. Not to be shy.
Now some of you people came to our retreat at Fellowship Farm and you told us that you want to start a group in Pennsylvania. But we want you to talk up - don't be afraid. Talk up...
[give and take with the group...]
...and what it took to start a Philadelphia chapter. When I was chapter president, it was very hard for me to start and for people to listen. We started our chapter at the Girls High at Broad and Olney in Philadelphia in Pennsylvania in Philadelphia. They had night school there and the principal came around with a note and said that there was a chapter meeting downstairs in the kitchen. So I was very interested in being a chapter president, helping to make Speaking For Ourselves go - I was very interested in being part of that. And I been a part of it for five years... So that's how it got started...
[give and take with the group...]
Hello. Can I hold the mike, please? I am going to do a role play here. I'm going to ax you - you listen very carefully - I'm going to ax you Where you from and Where you live - this is just a little test - and What state you from... My name is Roland Johnson. Glad to meet you. I am a chapter president and there's some things that I want to know from you...
[give and take with the group...] I would like to involve you all into the chapter meeting. And I'm going to start off by saying my name: My name is Roland Johnson and I live in Philadelphia, Pennsylvania. And people come to our chapter at the Osteopathic Hospital at City Line Avenue. They meet once a month at City Line Ave. And I would like to get some... I'm gonna... Let's make pretend you at City Line Avenue and you the members of the group. Now I'm gonna ax the group... Some of you are new... I don't know none of you; I don't know anything about you. So I want to know something about you - where you live and what you do and what's going on. So I'm going to ax...
[to first person...] What brought you here... what got you involved? Do you mind speaking up?... Did you bring a friend?... Tell me something about yourself...
[give and take with the group...]
[first issue...] Matthew, my name is Roland Johnson; glad to meet you. First of all you have an issue and I want to help you with that issue. You want to tell me something about the problems that you have? Tell the group... What have you know about the chapter? Has the chapter helped you?...
I think that's a very nice thing to do [cookie sale to raise money - K.W.]. But I want to know if you involved everyone in your group... So you all baked and that's how you got to come here by raising money...
...New members cannot speak for themselves and you can get these people involved. Involve them all what you live at, where they live and stay - so they can be involved too, because they might have problems to deal with to come to the chapter. How do you get people to get invovled in your county? Well, what we did was send little cards, 4 by 4, with your name and your company or whatever - where you're from - put your telephone number on the card; we send like a little registration card...
[introducing Luann Carter, founder of Speaking For Ourselves - K.W.] She's gonna tell it in her own words - I'm not gonna talk for her. She's a person that very dedicated for what Speaking For Ourselves... and very hearted dream-wise. I think she's a dream-woman; she's a dream-er. And the dreams that she came up with - it was a long time ago......
[Luann speaks...]
Thank you Luanne with that 'spiring words and efforts. I would like to say some groups are... Sometimes staff are in control of your groups and that sometimes takes away what you're trying to do. I think it's a good idea that staff is not a advisor; I don't think you can use staff as advisor because it takes away for what you're trying to do and what you're supposed to be doing and looking for. Now advisors are there for to help you to make things happen...when you get stuck...or things that you can't not do. That's what an advisor role is. Advisor role is: Who's in control. I wanted to know who's in control because you are the people is running your chapter and running your groups. Because if you get too many staff person try to run the group they try to take over. And that's one thing you can't let do - let staff persons take over. But an advisor's role is to sit back and try to help you be individual. To help the president and the vice-president and the secretary and whatever. The advisor role is to maintain your chapter. The president is to maintain order in the chapter and maintain a kind of a system with other people. The other part is to help people to make people understand that you are in control; you are in control to run your meetings the way you want to run it and not the staff. The advisors are there to help you when you get stuck in things. And the reason why I know this because I been the chapter president 'fore I came to be a Board President. And what that is it's a very hard task to be a president, taking on a role of responsibilites over a chapter. If somebody's trying to take over, there's no sense in needing a chapter if you're not in control over the chapter that you serve. Thank you.
I'm a member of Speaking for Ourselves; I'm a part of the Speaking for Ourselves, making things happen that people will get their life more better. With Speaking for Ourselves we have members do things for their everyday life, like coming to boards and 'powering other people to make their life change different. And my life is part of their life. At one time I used to be part of an agency with a lot of other people, a big agency, North Central. And after North Central phased out, Comprehensive phrased in; then after Comprehensive phased out then part of Colmar took over. And I was shuffled in lots and lots of places. They did not make my life more happy; it did not make my life more safe. At that time - in '73, I think, if my memory serves me correctly - at that time I was in the hospital and I remember that Peggy L. had came and told me that, "Did you know North Central is closing?" And that, "We have to move you, shift you around, shift people around again?" I didn't like it so much, but people just don't understand the system. It should make the system better by listen to the consumer, the people that you serve, better. I come from a lot of backgrounds. I used to live at Elwin; I don't like that name so much. But I used to live at Elwin at Chestnut Hall, 40th and Market. I came through from a tough, tough start - a tough situation. And after all this moving around and shifting around that we did with other agencies and shifting around with all the clients, I don't think that was a fair idea to do. Now the issue that I'm up here for is to make sure you people empowered about the HIV. And I would like to know: How many people that served in the MR system? Show of hands... Who works for the system, in the MR? Quite a few of you... Who works with people in the agencies, the caretakers? Anybody? Well, I would like to see that. I thank you for showing your great efforts. But we don't stop there. Our great efforts do not stop there. My issue is: I was HIV positive; I have HIV, but I don't have AIDS. I've been knowing that I have AIDS for five, five and a half? [Nancy Nowell: Maybe four years...] Four years. The reason I'm turning to Nancy: Nancy Nowell is my support and she knows all about the history, as well as I do. [N.N.: Tell them what it feels like...] What things feels like, when people that have HIV - they forget things, they don't remember things that happened to me. I am taking all different types of medicine that would help me to sleep at night; sometimes I have sleeping nightmares, that somebody has to be with me every other night because I wake up and I think that there's somebody after me. I know a friend named Chuck W.; Chuck had HIV; he had AIDS. And I don't want to take part of this time and talk about him... AIDS is very, very... a bad disease - you don't think of AIDS as bad disease. When the doctor didn't tell me that I had AIDS, when he test my blood level, when he tested things and I questioned him on things about AIDS - do I have HIV - he never told me that I had AIDS. And I was kind of very scared when he didn't tell me that I had AIDS. Then I went to another doctor to find out did I have AIDS. Yes, I have another doctor, Dr. Gross, Maurice Gross; he tested me for HIV, because I didn't feel like I was comfortable back... Hey - I had AIDS. "You have AIDS." I had to find out for myself from another doctor. "Would you please tell me the truth: Do I have AIDS, do I have HIV positive?" So they tested me again and got my records from Philadelphia and they said that... How this all happened, I came to talk with Mark Friedman... I don't like to name names because the person could get into troubles; I'll get into troubles. He was the one who had followed me through with the doctor in Philadelphia. Sometimes the doctors don't understand, because he was just learning about, probably, about HIV. So I had found another doctor from Abington Hospital; he's a private doctor. I possibly had AIDS. Possibly. I wasn't satisfied yet. Till I had to sit with Carole Nettleton; she's a very special counselor; she's a specialize in different fields. And I had axed Carole Nettleton again, "Do you think that I have AIDS? HIV?" She said that, "You don't have AIDS, but you have HIV." Now, two different things can happen in people's lifes, with two people. By not using safe sex, the proper ways of using safe sex - it is had to happen. People have to know that. The people that you are supposed to be serving don't have that chance to have what other people want - have to have. Have sex... But the right way to have sex is use a condom. To demonstrate a condom we have some things over here after I get done. I think that people need to understand that people are no better off. Instead of saying, "You can't have sex. It's wrong. It's very wrong." I think people should have sex, because that helps to stim themselves. But in the right way. I want to know why the people that you're serving are not allowing to have sex. Because sex is the heart of their inside. You take that away and tell them and say, "Well, you can't have sex." What are you going to do? Just open our minds, open our understanding, that these people that they serve, these people have been in institutions, trying to date girls and trying to have girlfriends, but they come out of an institution and they said, "Oh, you don't do this in my program. I'm not allowed that. You do not do this in our program." I went to Elwin and they have strict rules; I couldn't understand their rules. Their rules is that "You do not bring a person in this place without us knowing about it. You want to do that stuff, you do that stuff on the outside." Where's the place to go to do it? You can't do out in the street; that's in public; that's a very nasty place to do it. People have to understand that you have to open up and let these clients... - they're clients that you're serving. I have been doing this for quite a while without condoms, because I never knew about any... It's hard for me to make this point out. How many of you know of people in your program that have relationships with girlfriends and you tell 'em, "Not here. Not do that. Don't do that. It's not allowed." How many? How many? I want a show of hands... How many? Quite a few... Who makes these laws? Who writes them? Nobody. It's time now to let go and let the clients be aware of what they're doing. Because that's how they get frustrated; a lot of strustrated come from people that don't allow them to do what they want to do. Because the thing is - this person wants to have a date, a relationship. He don't know how to give back to people; no one has taught him. Another thing - I was in Pennhurst for ten years. And I was a child at Pennhurst. I have been sexually abused by another client, a patient up there. And I couldn't understand why this 'lowed, this stuff to go on. And that's what happened; that's how I picked it up. He picked it up from other people. I was no more that eight years old when I went there. And it is a shame; people think that's a shame, very nasty: "You're filthy." Why? You all have some kind of relationship with people. They're human. They're human. Maybe they can't get their point of view across, but they understand. They wonder; they see other people do it; or their mother do it; their mother and father do it. And so they pick that up from, maybe, when they was babies. I understanding from another person that you learn that as you was a child. And don't let nobody in this room tell me you don't think they don't pick that up as you're growing. You do. I was in Pennhurst and I couldn't push this guy away from me. It was hard; I was hurt. "I don't want to do that." People need to understand and waking up the system - because people need to hear about this. This is nothing that you can go away from it; can't hide it. It's out there. Many years ago in the gay community it was locked behind the doors, closed behind the doors. And people said, "Well, I'm going to hide myself in the door because I don't want my identity... So I'll lock myself in the door." Now it's coming wide open. When you touch somebody with AIDS, you can't get it. You can't get it by taking hands. You can't get it by kissing or you can't get it from the toilet, from eating off or dripping out of somebody's glass. You can only get this from contacting with another person's... with a female or a male. And the reason why I had gone to an AIDS course training at Temple University - and I think I passed that course - people came from New Jersey to teach us. I want to ax another question: Who works around people that have AIDS? Anybody? [N.N.: Everybody.] Everybody. Everybody. Are you scared of them? Are you afraid to touch them? If you're not scared to touch them, and you work around with them everyday, are you going to catch it? Why? I understand people wear gloves... [N.: We're going to talk a little bit about prevention and other stuff... Can I ask you two questions that I think only you can answer? Cause they're real important. How did it feel when you started to tell people you're HIV positive?] How did it feel that I was HIV positive? Unhappy. [N.N.: No - when you started to tell people.] When I started to tell people? [N.N.: How did they react to you?] Um, I went out and tell that I am AIDS, HIV - I keep getting the AIDS and HIV mixed up - I went and told my sister about that I have AIDS, that I have HIV. When they heard about that I had AIDS, they got very scared; they got very bent out of shape. "Don't you come and tell me that you have AIDS! I don't know what you do! Don't..." I figured that they was gonna say, "Don't come near me; I don't want no parts of you. You know what the Bible said about this, about having sex with another man." Oh, I was very unhappy about it. But I had several other people helping me with this. It was a partnership: that person went with me to my house - Mark Friedman and Dr. Carol Nettlton - went to my sister's house and I introduced to all my sisters. And I had thought I couldn't do this alone because it was very scary; I didn't know how to present this with people by myself, so I had to have a partner, a couple partners, to help me to do this. My oldest sister said that she was with me. "I'll stand and support you. As long as your body is strong, well..." And every time I go somewhere, every time she's hearing I'm going to Harrisburg, going to Washington, she said, "Well, your body must be feeling well, because you're going, you're doing all these things that anybody else that has AIDS can't not do" - cannot do all the things that I could do. But there's another side to this. I'm taking ATC. ATC helps the immune system to build up the white cells count. Sometimes I'm afraid to take the medicine because the medicine makes me lose concentration; I can't think. But I have to take it, if I want to get better. I have to take the medicine if I want to get better. I do want to get better. But it's hard to make people to understand that people need to hear this in the mental health field. People need to hear this and not to play games with it. You can't play games with the clients that you're supposed to be serving. I don't understand why people don't like to be working... See when I go outside, I can hear people say, "Oh look at that man walking up there. He might have AIDS. Stay away from him." But to me it's just like anything in the book: I got AIDS. So what. I got HIV. So what. [N.N.: Tell them what happened at your job. Tell them about your job.] I had a good boss. I used to work at Eastern College at St. David's out in the suburbs. And Ed Collins was my boss. And he was the sweetest boss that I ever worked for. And when I talked about my health going down, that my body was not feeling well, he said to me, "What's going on with your body?" He called me in his office, shut the door, and me and him had private conversation with each other. Me and him converted together. And Carol Nettleton and Mark Friedman was doing that with me, to make him understand, make him aware that I had HIV. He said, "Oh, does he? What can I do for him? I'm willing to do anything for him." He did not say, "I'm going to get rid of him, just because he has AIDS, got HIV." Because my other supervisor had HIV too. But it was getting too much for me; it was taking out too much under pressure... Washing pots, standing on my feet all day, and I was getting kind of tired and worn out. So I went to him and I said, "It's time for me to change over for another job." "Why?" he said, "Why? Why are you changing over your job? I understand what you got. I'm pleased, I'm happy to have you here to work for me." "But Ed, I have to change over to another job." And the job that I changed over - I love that job so much; they treat me like a person - with dignity. Carrol Reckard and her husband Willie watches out for me. She has her head down but she really works hand in hand with me to deal with that. I never forget: from Elwwyn when they heard that I had AIDS - let me tell you - when they heard that I had HIV, they said, "Well, I don't think we can serve you. I don't think you can stay here, because we don't know how to deal with it." They was ready to throw me out in the street. And I said, "They're are people supposed to help me? To serve me? And they're getting money to help me and they're trying to pitch me out in the street?" And I think this happens in... It might not be happening all the programs... People are in the mental health field, mental retardation field: that people don't need to be treated that way. "If you can't have AIDS, we can't take care of you." That's wrong. That's wrong. People need to understand that they special people, people that needs care for, need to understand. You have a thousand people living in this Philadelphia area who sleeping down in the subway. They probably have AIDS and they don't know it. People need to go and get tested for HIV. People need to understand that this is very serious. With this close, I think, Nancy's going to share some of that with you. Because my 'lectric friend is running out here. I'm glad that you all came to hear; I hope that you heard something; I hope that you are got something out of this little bit. If anything that you want to ax me, you can do so. But I would prefer me her talk together, hand in hand, because she understands; she knows the backgrounds of me and she knows a lot of things that I don't know. I'm being honest!......
You know me: I'm always on time; I like to get things on time, have smooth on time so things can go smoothly. Can I put this mike up a little? I would like to get things started. I'm going to ax the people from out there to please come in so we can get started. I know it's not ten o'clock yet but we want to be on time. I would ax no one to be moving around while I'm on the podi... While I'm up here; nobody's to move around. I must say that as your master of ceremony today - we have good things in store for you. I know there's still more people coming in... Also we have a special guest today. Is Bob Perski around? Can he come to the podium, please? Bob Perski? We would like to get started; it's almost ten o'clock. I don't know about your watch, my watch says five of ten. And we want to get started. I want you guys to say, out there in the audience, "Welcome!" Shake hands with your co-workers. And welcome to our twelfth, eleventh year conference. I am still looking for Bob Perski. Is Bob Perski in this building? Would you all quiet down please! [another voice: Quiet! Quiet! Shh!] Bob Perski? (Nancy, is Bob Perski out there?) I want you all to say with me, "Good morning!" How are you? Are you going to have a good day today? Well, well, I want you to shake hands with your partners. And say, "How are you doing today?" With that introduction, we're going to start off. Jerome, Judy Gran come in please. We're going to recognize people here today. I'd like to tell you, first of all... If you take out your program for today, if you got your book, if you got your folders, please take out your program today. And the first one is the agenda... I would like to say at this time and introduce at this time some county representators and some state representators. And we are very happy to have our state representators from each county, representing each county individually. First of all we want to give thanks to our, to our moderator(?) for today, for this afternoon, will be taken part of the moderator for this afternoon. I'm up here this morning, and I will be back with you this afternoon again. Our moderator is on my left side, for this afternoon, and Zach is on, is going to be the interpretator. Sign. For today. Zach. This is Zach. Everybody, say, "Zach." I want you to say, "Good morning, Nancy Thaler." [Deputy Secretary for Mental Retardation for the Commonwealth of Pennsylvania - K.W.] I want you to say good morning to Nancy Thaler's husband, he's going to lead us into - not yet - but he's going to lead us into a song and Debbie Robinson is going to help to lead you into the song. It gives me the pleasure to introduce to my friend and my colleagues... I been knowing Bob Perski for a long, long time. Bob Perski has been a founder and a helper, for supporter, of Speaking for Ourselves... (I'm looking for a Bob Perski book...) Bob Perski writes books about people, different people, and their lifes, and equal justice and that's what he's for. This book, that you can buy off of us, half price - I don't know how much is the half price, but I got told that this book is a half price. And you can buy this book by Bob Perski. He's a very good, strong man and he believes in things that we believe in. By getting people out of institutions and standing up for people's rights and standing up for the justice - one of the persons had went to prison... I think I'd better let him tell you that on him. Now, Bob Perski's been working in an institution, volunteer in an institution... And here he is... I'm going to give him a... while you give a good welcome, a round of applause for Bob Perski. Bob is going to speak for ten minutes. And if you look on the side, on the page, you can pull out the page on Bob Perski, what he does. Thank you.
[Bob Perski speaks...]
Now, okay, thank you. Now I would like to present Karl Williams and Debbie Robinson is going to lead you into a Speaking for Ourselves song.
[The song: "Speaking For Ourselves"...]
I am not going to let Karen Snyder get away from us just quick. [Secretary of the Department of Public Welfare for the Commonwealth of Pennsylvania - K.W.] She is a very, very understanding person. And her first time here, being here with Speaking for Ourselves. We're the ones who's got her here... had got her here to understand about Speaking for Ourselves. I think she knows that already. But in her own words she might have tell us something about what Speaking for Ourselves do. We don't want her to be sit 'tentively - we want her to come and be part of us with Speaking for Ourselves. She has a big top job on her - she is Nancy Thaler's boss. She used to work for the Pennsylvania State ARC in the State of Pennsylvania. And helping before Bob Casey... to try to close institutions. She is fighting in your behalf of speaking out for ourselves. And she is a dear lady to us - to have her here, this morning, to be with us, today. And it is my pleasure to, to have her stand up, and Karen Snyder, to let everybody know who Karen Snyder is. She's the director of MH/MR in Harrisburg. I have been to her conference and she has taught me something; she knows a whole lot of things and we appreciate you for coming today, being part of us. I hope that you could stay around for the whole day. Debbie's going to take her around and show her college while she's here. Thank you. With that we're going to move on. Now we're going to go to classrooms. Now listen up! Listen up, that what I'm going to say. Everybody have a colored dot on your name tag? That's the colored dot that you will, that's the class that you will be in. The first class. Don't move anywhere - not yet! Sit down - not yet!
[Further directions and people move out...]
[Debbie Robinson's introduction.]
Thank you. Thank you, Debbie. I'm glad to be here today. I'm very glad to be here at all this three days. Today we're gonna talk about: How to be in control; who's in control. I want to know - raising hands - who are in control. Are you in control? Are staff in control? Well, I understand that you need to be in control, and some of them are not in control because staff tells you what to do; advisors tell you what to do and staff tells you what to do. I don't believe that you are in control over your life. And there's some people out of state needs to understand that you are - the people are - 'posed to be in control of your life: how to set up, how to do things, how to make people understand you, how to make people love you and care for you. I come back in Pennsylvania, I speak in front of a hundred people in Philadelphia. My name is Roland Johnson and I'm glad to being here for welcome you here. Control means being in self-control. Who's in charge over you. Are you in charge? Is staff in charge? But who's in charge? Well, some people tell me that sometimes staff is in control, that you don't be in control over your life. And doing things in your workshops or in day program and in where you live - staff in control. I want to know who is telling you what to do. If you're telling yourself what to do or are you letting staff tell you what to do. I can't hear you! You're supposed to be in charge, right? I can't hear you! Who's in charge? All right. Are the workshop people in charge? How about people getting the jobs? How do you go to your supervisor or your staff, that you want to get a real job and work in community and on real jobs? How do you do that? Can anyone tell me how you do that?
[Voice.]
You go to your people whenever you want?
[Voice.]
You tell them what you want. But do they listen?
[Voice.]
Are they supposed to be serving you? I think that they sometimes want to take control. And people are not supposed to be taking in 'trol; staff is not taking in control.. If this is supposed to be a movement - I think that you supposed to be in how to tell them what you want done. And how to do things. And how to tell them Get off my back; let me be in charge; let me have in control over my life! I don't know how to put it this way, but I understand that there are a lot of people sometimes are not in control over their life; are not saying to themselves and saying to staff, "I want to be in charge of my own life. I want to be in charge." Can you say that? With me? I want to be in charge over my own life. Not you telling me what to do. I want to be in charge of my own life. And I have a lot of people tell us that sometimes people just don't listen. There're people out there doesn't really listen to you. I know in Pennsylvania they don't listen very hard, very nicely. So we have to waken people up and make people understand that we are in control of our own life and tell us what to do. Cause when I was in Pennhurst, Pennhurst State School, I had people who controlled my life. I had people control me and tell me what to do, tell me when to get up, tell me when to go to bed, tell me what not to do: If you don't go to work, if you don't do the things that you're supposed to do, then your privileges will be taken away from you. How many people be in a situation like that? Show of hands. Quite a few. Quite a few of you have been in situations like that, just like me. How many people have been in programs that tells you: You can't do such-and-such a thing; you can't do it here, not here, not in here. Show of hands. Good. And the only way to break that barrier is to tell people that you are in control. You are in control over your own life and in your own ways. And tell people - be honest and be sincere - and say that: I am in control over my life; not you tell us what to do and how to control your money and how to control who's in control. And that's what I go around the country saying: Who is in control? I been at London, England 'bout three years ago and I said the same thing and I got the very round of applause, clapping: Who's in control? Because sometimes people think that you can't do it, you can't do the things that you're 'posed to do. They don't trust you enough. If you be honest enough that they might trust you, if you do the things that you're supposed to do. I mean every day that you live in your program, that they're not supposed to tell you how to make changes come. How to make people listen to you? Listen - listen: is two different things. Listen and telling somebody what to do is two different things. And it's hard to listen to, to understand people. I'm not going to take up too much of your time. I'm gonna just say: Thank you for this, for me to come here and speak. I'm want to give honor to Patrick Worth [Founder of People First, Canada - K.W.] for allowing me to come here and speak to you and for all this week. Thank you very much.
...As I was saying, I'm from Speaking For Ourselves and I do a lot of things with Speaking For Ourselves. We try to get people out of institutions and stuff like that. We go sit on PAC (Planning Advisory Committee: a group consisting of consumers, parents, providers, advocates, and state and county government officials which adivises the Office of Mental Retardation of the Commonwealth of Pennsylvania on policy matters - K.W.], the DD Council [Developmental Disabilities Council - K.W.], the Steering Council [Roland was elected to help organize a national self-advocacy organization - K.W.], and a lot of different types of committees I sit on. And the reason for that is just to give my opinions about people being in institutions. I was in an institution before at Pennhurst, because I had some problems with my mother and my mother couldn't handle me at the time any more and so I was under a court case designed to go to Pennhurst. Looking for a way at Pennhurst... Running away from home... Running away from my mother at home...
[S.B.: Can I say something about some other things around I guess, Speaking For Ourselves. I didn't get to completely introduce you. You've been a very active member there for maybe about nine or ten years; you've been the past president of the Philadelphia chapter, past president of the Speaking For Ourselves Board. Roland's been very active as he said speaking in the communities. He doesn't talk about this, but he's met President Bush. You gave him an award. You went to the ADA signing in Washington.]
Me and Debbie Robinson watched the president signed the ADA.
[S.B: And you've spoken in London...]
I went to London three years ago and spoke there with three thousand people there and spoke about how to get a chapter going there in their country. And they wanted to hear me so much that everybody stood up and gave me a round of applause. (He laughs.)
It takes me a while to get started to talk about how people being in institutions... I was in an institution at Pennhurst. Pennhurst was horrible; it was very very very horrible there. Looking at the situation there: people used to be being hit there. I was put there under the age of ten years...
[S.B asks questions and Roland responds... Conditions at Pennhurst when he was there.]
It's horrible to talk about something like this, people being in institutions. With the lot of patients there that they had there at Pennhurst, I think it was kind of hard for them to manage a lot of people with handicap disabilities... Have you ever been out to Pennhurst? Have you heard of an institution like Pennhurst? Byberry State Hospital? Embreeville? Have you? Well that's some of the things that goes on in an institution. And this is why I keep discussing about people being in institutions, because things can go wrong, things can happen to them, and people can be hurt and be injured and different things. Like little kids can be very abused - sexual abuse. They was some sexual abuse going on out on D-4; there was some very crime, bad bad behavior pattern; and attendants didn't do anything about it. You go and tell the attendant; the attendant says, "I have nothing to do with it." Their hands was tied. So, what happens is that you tell the head supervisor and all she would do is write up conduct reports and send it in to L college and you had to go over there and meet the superintendent the next morning...
What made it a bad experiennce? If you went out there today and seen Pennhurst today, and if they had people today up there, you would say to yourself, "Do I want my son and daughter there? Is this how they treat you? In filth and roaches crawling down on the walls and bugs and mouses running in the wards. It was horrible. I don't think that the superintendant had anything to do with it; he had his hands tied. I think the people that managed the money didn't look at the place very well - what needed to be done; what needed to be fixed up; and what needed to be taken care of. It was not a good management care. I can sit here today and tell you and keep telling you: It was not the way it should be. Now in the hospital it was management care very well. Very well. But the wards was not management care, was not taken care of very well. It would be just horrible. If you walk on one of the wards... If Pennhurst been still open, you would walk on the ward today and seen, you would say to yourself, "Is this how they treat these clients and these patients? Unsanitry. Unfilthy. Beds unchangeable. People used to sleep not three or four covers, but they used to be bed wetting and sleep in their own filth. And low grade clients used to be throwing soil at you. That was sickness. Some of the patients used to be tied to the benches - all day long in shackles, all day long in shackles, in restraints, all day long. Whoever want to be in restraints all day long and can't free themselves? It was awful sight to see. And this is how come that people didn't take a good look. I know a parent used to fuss at Pennhurst about Pennhurst about the horrible conditions that they have up there. That the conditions was very horrible. It was not like any other institution. I can't 'xplain any other way, but it was horrible, a horrible place. Like an animal in a zoo, locked up twenty-four hours; that's an awful thing to do; you can't do that with clients, with patients.
[S.B. asks how he got out of Pennhurst.] I think that the important thing is to know that when you work around with people with disabilities that they sometimes they hard to get to know you - you got to know them very well. It's very hard for a person, if you bring them in your office, or talk to them, if you find out that somebody is very upset due cause they just came out of an institution, had been placed in the community. Sometimes they don'y get to know you very well; and sometimes they do get frightened. Fears sometimes - I must instill this in you - because when I first came back out in the community I was scared for a little while. And after that it moved off and I wasn't scared no more. There are people that do get very very scared; sometimes they don't like to get near you sometimes...
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