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Lost In A Desert World

Creator: Roland Johnson (author)
Date: 1994
Source: Available at selected libraries


Lost in a Desert World is the autobiography of Roland Johnson as told to Karl Williams, a songwriter and novelist. Johnson spent much of his childhood at Pennsylvania's Pennhurst State School and Hospital for the Mentally Retarded. He became a leader of the self-advocacy movement and was president of Speaking For Ourselves, an civil rights organization run by people with developmental disabilities. At Pennhurst, Johnson endured all sorts of abuses, including sexual abuse. After Pennhurst, Johnson went on to become a respected public speaker and helped to redefine the public meanings of disability. He died in 1994.

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After that long ride up there, it was just horrible. That was very scary. Very, very frightening. I was crying that I would never see them again, my family or sisters. We went out into this great big institution that I didn't know anything about.


I saw Pennhurst for the first time. Where you come down on the main road you see this big thing up at Pennhurst, the water tower, coming in to Pennhurst. Things looked different to me -- because it wasn't like a house that I lived in. I'm out here in this gray institution with three thousand people that live in it. It was just something that I didn't like. They had a playground there as you come to a dead end. And the office.


They admit me on the hospital ward. It looked to me it was all right. I was on the hospital ward before they discharge you from the hospital and put you on the ward. It looked pretty good to me. They fed me very good, filled my plate up with a lot of food. It smelled like a hospital, like a regular hospital; it didn't smell like it had a strong odor. It had beds, lots of beds and lots of nurses and different wards for the little kids and for older people. And cribs that had babies that was sent there at Pennhurst. I didn't know first thing about the place; didn't know where I was going or what I was doing there. But I knew what I was sent there for -- to be out of my mother's head.


Well, I was on the hospital ward. They interview your mother -- my mother -- and they axed my mother some questions. I wasn't there; I was getting undressed to be on the ward. I didn't know what she was saying; I don't know what took place. All I knew -- they took me back in the hospital ward and my mother was talking to Mrs. Clark.


But once I was there things got very overwhelmed to me. I stayed there for a week and ten days. They did some tests, psychological evaleration and stuff like that. The doctor keep axing questions. It was so much overwhelming that there's this great big ward with all these people; I'm used to my mother and father, my sisters. Never was used to all these other people around. It was just something. I was just crying, with tears. I cried that, "My mommy's gone; my daddy's gone. I will never see my sisters again or my brother or anybody. I'm here for life."


I thought that, "Here I am. I'm here and there's nothing that nobody can do. Nobody can do anything about it. I put myself there; I got myself into all this mischief and trouble and that's why I was here, to try to better myself." Maybe I had a lot of guilt in me. And that's why I was sent there. I had a lot of bad memories -- things that I used to do, things I used to take. And if I didn't take them, I would be still living with my mother instead of at Pennhurst. If I wish back, if I wished that I could do it over again, maybe that possibility that I wouldn't have control over myself, that I might have to do it all over again, stealing and taking things and eating my mother out of the house. . .I guess it was just a thing that I could not think of. . .I put a thing down back in my memories: I would not do that any more; if I came out of Pennhurst, I would not do it, not eat my mother out of the house any more; I'd change.


I cried when my mother left; I cried before she left and after she left. And I cried when I left out -- when they transferred me to the ward, to D-4.


It was very high function ward. All different patients, light, colored, all mixed. No women -- women's used to be up on the hill. And the boys'd be on the boys' side, down the hill. It was about a hundred people on the ward. All the beds on one side; there was a bedroom on that side, bedroom on that side, windows in the middle -- attendants' windows -- the staff offices in between the bedrooms.


Everybody had a locker; the attendant had a key to open up the lockers; nobody could have their own keys. Attendants would mark the clothes with your name in it, so when they sent the clothes out to the laundry they know this is your clothes, they're nobody else's clothes. Anything that you get for Christmas they would lock 'em up in the locker.


In the day room they had a TV; that's all that was there -- just TV and bench. No toys. Only toys in school.


It sounded like vibrations: crazy people was going out of their heads, out of their wits. It just sound like people that need to belong there. It sound to me, in my personal feeling, that people was just doing things that should not have happened. So that's what it sound like; it sounded like -- fear; that something not right. It was just scary -- a frightened, scary place.


The floor was waxed and polished every day and they would run to move all the benches and mop the floors and strip the floor and lay new wax down. And we would help to move the benches back in the dayroom after the floor's been waxed. They would take the machine and go over it and polish the floor and the bedrooms.


I used to stand in line, waiting for a toothbrush. They had green and striped clothes -- state clothes. We used to get shoes from Graterford Prison. I was afraid that somebody would steal some good personal things that I had, that they would just take that out of under my nose.

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I went around with groups. We had to go outside or we went down across the subway. The subway was underground; we would walk through there when it snowed, rained. We would walk through underground, the subway, to the dining room. It was a big, big subway; it was hard for me to figure it out; all the buildings was connected.


They had a dairy. The truck used to come early in the morning to pick up the milk and have it homogenized. I saw it around six o'clock when I was going over to the dining room. It would stop at the kitchen and they would pick up something from there. Trucks would bring coal; they would wave -weigh -- K.W.- it before they take it down there to the powerhouse, the generator with all the steam.


I was afraid of these grown men -- these was not workers; these was actually patients on the ward. We would be sitting on the long benches after we come in from the dining room hall or come home after school; we would come back and we would be watching TV. We had a black and white; we didn't have a colored one. I used to watch the American Bandstand after school. And I seen these people doing things to these other children and I say, "I hope this don't happen to me." And I just was scared; I was frightened.


I believe that the workers had their hands tied. It was only three attendants on the ward at that time; there was be about a hundred and twenty-two patients. The attendants had their hands full. They was overloaded with work, taking care of the residents and making sure the residents get the places where they're supposed to go.


It was just a terrible thing to see. The doctors would make the rounds on the ward and the nurses too. And the supervisor would make the rounds, but this didn't take place until when the other shifts was changing over.


I didn't like it at all. Boys used to call me names and laugh at me. It was some of my age, but not much. People would be following you around and axing you for things and stuff like that.


I got scared at around the nighttime. All this stuff happened late at night. Lot of people was sleeping. And they'd be boys with these grown people and they would be waking up other people, their friends, getting them out of bed. I thought that they was going to do that to me. And they did and I couldn't do nothing about it.


At that time I was sexual abused.


It was very bad. Grown people laid me down on the floor and nowhere to break away from them and tell them, "No, you can't do this."


It was grown patients, higher functioning patients. They had sexual with little kids. And no one would help. This would all happen when the attendants wasn't looking. Some of the attendants was sleeping, wasn't aware of what's going on. And they would have sex with me. And they did all kinds of things to me. They did awful things to me. It was very scary. It was very, very painful.


My family didn't visit, not right away. I was ashamed of people using me when I was a little boy. I don't know. . .It was just very hard to talk about. I tried to talk to my father about it, but he was very busy; I just couldn't talk to him. I did try tell my mother, but I don't think she could do much about it. She would tell me, "If they bother you again, you just tell somebody. Go and tell somebody." And every time I tell somebody, they do the same thing over after the attendants leave. She talked to the supervisor when she came to visit me: "I heard there's some problems with my son. . ." and "Could you help him? He tells me that boys is picking on him and doing things with him." The supervisor didn't do anything. They talked to my mother that it didn't happen. It did happen.


But I wasn't disappointed; I can pick up things when not even looking; I can feel something. I pick up scents -- like someone is coming towards me or something, getting ready to hit me or something -- I can pick up a scent. My mother wasn't a person that would know anybody that she could go to; she had no control over that.


My first teacher treated us nice. That's how I remember. There was lots of kids, lots of boys and girls. We used to work on how to learn to write our letters, ABC's, and how to spell, how to print, write your name and stuff like that; sing songs -- "The wipers on the bus goes 'swish, swish, swish'. . .Tic, tac, toe. . .When the leaves turn colors in the autumn, red, orange, gold, and brown. . ."


I went to homemaking, and sewing, and cooking. They teached us how to bake a cake and pies. I learned about wood shop: I made tables, coffee tables, bird houses, a wagon, a child's desk table, stuff like that. We'd sew pants; I made a dress, a shirt.


Some would go in at ten o'clock; some would go at one o'clock. I was protected from school, because people was around. They would not go to hit me and stuff like that.


I had a friend. He used to get me scared. He used to say, "If you don't watch yourself here, they will write a little note and send you to a bad ward, and they will keep you on the ward and put you in the sweat box, put you in shackles and restraint jackets. . ." and all this kind of stuff.

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I said, "Ah, c'mon. Don't tell me that;" I said, "C'mon, you're not frightening. . ."


He said, "Yep, that's what they'll do. If you don't listen, that's what they'll do."


I said, "No, it's not true."


He was right.


There was people on the punishment ward all the time. They would be writing conduct reports and they would be sent to the punishment ward.


I was on punishment wards M-l, U-2, K-l, V-2, K-2, 1-2. The numbers had to do with what floor the unit was on. . .physical handicaps -- they couldn't feed themself, they couldn't go to the bathroom themself, they couldn't bathe themself, they couldn't move anywhere. . .


That didn't happen right away. It took me til I got used to it -- Pennhurst. And that's when people would get me upset and call me names -- "You're stupid. You're crazy" and all that kind of stuff. Patients would say that. I don't know what they would say that to me for; I had no idea. It didn't make me feel good. That make me mad because they would call me like "Dummy. . .Dopey. . .Don't know nothing. . ." -- and so I got mad. I tried to tell somebody to make them stop, but they wouldn't make them stop. And I got upset and I cracked one of the windows out. They punished me on the ward for breaking the window. I was a person that had to be always breaking up windows when I would get upset. It was people bothering me, calling names. "You'll never learn; you're crazy; you're an idiot; you're stupid! You don't need to be on this ward; you need to be put on some other ward." So I would just bust out windows.


So they would write up conduct reports and put me on a punishment ward -- just lock me up in there and make me scrub down walls for a week; doing all kinds of things -- scrubbing soiled benches.


The reason why that it was locked, they had low grades, that they would not get out. They had one college for the low grade. . .They had different colleges -cottages -- K.W.-, different wards for different. . .They had wards for the bright ones and then they wards for the lower ones.


That's the words that they was mentioned at Pennhurst, so that's the word that I have to use. They don't say them any more because they're outside now, they're out in the community; they don't hear them words any more.


If you had spent your time up there, you wouldn't like it. You wouldn't like it. If you was in my shoe, you would cry.


The low grade ward: it was filthy and dirty -- holes in the walls, holes in the floor. Walls would be cracking open; clients would eat the paste, the chalk off the wall, the tile off the wall. They would just eat it. And the only way to keep them from eating it would be put them in restraints, tie them to the benches. And that's what I seen one day.


To tell you the truth, Pennhurst smelled like a doghouse. It just smell like feces. Rats crawling, roaches crawling all over; this was on the low grade wards. Holes in the wall, big holes in the floors. It was awful to see. You would cry to see people living in that kind of filth. Horrible. Feces and pee on the floor, flies coming in the windows. It was a lot of wards with lower function -- the C functions, they used to call 'em. I don't know what that is, but it's something to do their mobility; they can't address themselves. The real, real low.


I remember they'd call me "screwballs" and "retarded" and stuff like that: "What are you doing here, you retarded person. You look scary." And I got very, very, very angry and crashed out windows. I got beated with mop handles. I had to scrub beds for punishment.


It wasn't all bad. We went to church -- a yellow bus took us out, the choir, to sing at another church. They had a gymnasium; they would ax the choir to come and surrender a selection of church singing. I would go along with them. I didn't sing with the choir, but I used to help Reverend Yost lighting candles on the altar (they really call them altar boys) -- he put me on the list to go. I was proud about getting on the bus and going to church. He showed religion movies in the summer. And then I would light the candles for the Protestant church on Sunday afternoon. The Catholics would have church in the morning and we would have church in the afternoon. I used to set up the rooms at the school building. Sister Bernadette used to come, the Catholic sister, and have classes every Tuesday. We had -- the Protestants had -- a Bible School down on one of the wards.


I was in Boy Scouts. And then we used to play up there at Royersford and Spring City and Pottstown when I was a Boy Scout. We used to march. Our Boy Scout uniform would be Troop 91.


They had a band for Labor Day and May Day and they had a May Queen. This was fun: we would get dressed up on whatever day that May Day would fall on; somebody would be dressed as the May Queen -- one of the girls, with a crown -- and we would dance around the Maypole. And then we would have tumblers -- we would dress in white uniforms -- white pants, white shirts -- and we would tumble. That was fun to do. Mrs. Moyer, that's the principal, she would have a big box up in the attic and every year after May Day was over we would have to put all our clothes up in the big box in the attic.

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There was a baseball league from the different wards. Dave Miller would make up schedules; he was head of the recreation department. We won some championships. Trophies would sit over in the administration building. We had no access to it. They'd just sit in there. I hit a home run.


They used to show movies every Friday on a big projector in the auditorium. When you come down over the hill on the boys side, there would be a big gym room and the auditorium. That's where the Catholics had their church in the morning and the Protestants had their church in the afternoon. And that's where during the weekdays we had gym. It was a big auditorium; they had a great big, wide, electric movie screen and a real movie projector. We would get the movies, 'cause I used to work in the storeroom area. They would bring the movie reels in on a truck from Philadelphia. There was no popcorn -- there was nowhere they could make popcorn there.


Everybody had a joke for each other. We was just laughing about jokes and making jokes. It was always funny. There was just things that people laugh about. It was just a joke that would say, "Oh, there's that so-and-so person. Look at that person walking silly!" They wasn't really acting silly. It was just cracking jokes. I mean that the higher function was making jokes. It was always funny. But it didn't help me to get out of there. All I remember, that there was a lot of people that I knew, up there, way back ago. Many many years ago.


We used to play checkers and we used to play records and have a dance at the gym and every Christmas a party. The lower functions would go first and then the higher functions would go last. They would have Halloween parties -- I dressed up as a nurse for Halloween. A big Thanksgiving dinner for everybody.


They had swings down on the playground and every time it would snow we used to go sledding. They would put a rope on the truck and pull us up the hill. Yeah, I had a lot of fun.


They had ice-skating. I never ice skate -- I'm not going to break my legs. They used to teach us to roller skate in gym; you used to get a chair and roller around the auditorium. I fell down sometimes, but they'd put a chair in front of me, and I used to push the chair going on around the floor and I learned that way how to skate. Once a month we would go up on a yellow bus to Pottstown to Ringing Rocks, skating. That was fun; that was very fun, skating.


And then I had a penpal buddy. He used to write me a letter every other month. I found somebody to read it to me -- my school-teacher. I never know the person's name; it had their address on it, but I didn't know where they lived. In the letter it said, "Dear Roland, I hope that you are feeling fine today. I am writing to see how you are doing. I know that life is not too cool for you, but I hope that you will get out some day. And I'm sending you. . ." They would be sending me cards -- birthday cards and stuff. They used to send me a Christmas package. I didn't know where it came from. It didn't come from my mother; it didn't come from my father. And I would get an Easter card and they would send Easter eggs.


We used to have Easter egg hunts. We had picnics in different months -- a Memorial Day picnic and a Fourth of July picnic and a Labor Day picnic on the grounds. Some families came, I remember. We got on the Spring City fire truck, the one that squirts water and people would get wet. It was very nice. They drove us around on hayrides. We had an open house every May.


At Christmas someone would get dressed up as Santa Claus and go to the low grades wards and give out candy and sing Christmas carols. I know, I was punish on one of the wards.


I was punished on the ward and I seen what other patients had to go through. And they had to lie about it. That when their parents would come to see them staff would say, "Well, we didn't do that."


Staff would tell you, "And if you go and tell your parents that we did it, we will find out and we will write a little note and put you on another ward." And they'll put you in a hole, a sweat box. And they would beat you up there, if you told your parents that this was happening. I was so frightened.


And not only just me. There was other clients being abused, getting hit over with the mop. And this is not patients doing this. This is staff. I saw it with my own very eyes.


But I didn't get hit with a broomstick, a broom handle. It was other people got hit. Patients would get hit. These was patients that could not take care of themselves, they couldn't talk for themselves, they was like low function -- they would get hit. I don't know why. Don't ax me -- I don't know what in the world they would hit them up for, the reason. So, I was pretty nervous, being on a punishment ward. That's when I thought that things wasn't right for me. I was very scared, very frightened, very like -- suicidal. Why I was there at Pennhurst? I was going suicidal of myself; take my life. But something said, "You don't want to do that; you got a lot to offer." And I didn't. So I had a lot of frightened, scary moments.

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I was bad; I had my bad behaviors up there too. There was some things that I used to do, like striking at the attendants, hitting back at the attendants. I used to. They would make me upset. I would smash a window.


Dr. P. used to suture me up when I bust out the windows; he used to put sutures in me; he was really strict. Somebody got me upset. The mark's not there now. They would suture my wrists, 'cause if they didn't suture that I would bleed to death. I would just smash the window; it would cut my wrists. I remember that every time I used to be punished for something, being on a low grade ward, cleaning up soil, patient feces and stuff.


I would say I'm a person that was lost and lonely and just in a desert world. And no one to talk to. Just out there in a big institution all by myself. All lonely. That's how I'd 'scribe it. I thought I would be there forever. I was kinda thinking that on that issue -- that I would be there, if I didn't stop doing the things that I used to do, I would be there for a long time.


My mother used to come and visit me when the car was working; if the car was broke she couldn't come. She would write letters to me; one of the teachers at school used to read me the letters. My sisters came -- LaVerne came, Bertha May came, Bootsie came. I would spend a pretty good day with them, a whole day, just walk around on the grounds and go to the canteen. We would be having a conversation, just walking around.


My mother said she couldn't believe how skinny I got. I was real thin. "Boy, you amaze me," she says. I went home 'round Christmas and Easter every year. And that would make me feel good. I would stay a couple weeks. My mother said that, "Gee, you talk almost like a white person. Where you get all this 'Thank you' and 'No, thank you' and stuff like that. Boy, they must have taught you something." I tried to tell them what it was like, when I came home for a home visit. But it was horrible to talk about. It was a horrible place, very horrible. I couldn't talk too much any more. It was hard, but I had to go back, finish out my sentence, until they tell me I could go.


In the summertime I saw this young boy get thrown out the window. I saw it 'cause I was in the day room. On some of these low grade wards they had these kind of screens that you can't push out, that you lock with a key. Now this was on a bright ward; they didn't have screens in the window. It happened like three-to-eleven shift; the staff was coming on -- the change of staff; the attendant was doing something. This other person threw him out the window, pushed the person outside the window, all the way out, when the attendants was not looking. I saw that happened. I didn't think that boy would live. There was a solid, a hard solid ground where this person got thrown out the window -- broke his leg and broke his hip. I think that it was just an awful sight to see. I cried 'bout it. We went and told the attendant -- but what more did they do; the damage happened. And they rushed him up into the hospital, got his leg in a cast, and put him in a traction: they put your legs up in the air with rope.


Anybody was bad, if anybody got caught doing something, they get put on a punishment ward and they would stay there til the end of their punishment, for a week, maybe two weeks. I was on the worst punishment ward and I had to do the scrubbing: scrub the benches and scrub cribs and scrub the walls down.


It was horrible. I saw people get knocked -- just hitting them with brooms and mop handles. Their heads would be cut open; they would send them to the hospital with their heads split open; blood would be bleeding; mouth would be all swollen up. And I cried; I really did -- because they couldn't fight for themself. It was horrible.


I wonder why did this go on, why did kept happening? And from the time that I was up there, it still went on; things didn't change any.


Where I was living they would be hitting too -- them big strong boys. It wasn't the attendants that did it; it was the patients: Charles R., Eddie T., and Eddie S., and other people. They would hit them over the head with mop handles and brooms -- whatever they could get their hands on; they would hit them. I never got hit; I got out of that; I hid in the bedroom underneath all the beds down in the rows. They chasing everybody else around; they couldn't catch me. I was very scared. They hit everybody else but they couldn't get me.


They would be going to the hospital with cut heads and sores on the backs and Dr. W. would come around: "What's all these patients being hit for?" And Dr. W. would write out prescriptions for nerve relaxers and Thorazines and stuff like that. The medicine cabinet would be open -- they would have medicine cabinets open, wide open -- and somebody got themselves a bottle of Thorazines, liquid Thorazine, and drunk a whole bottle and got very sick and they put him in the hospital -- they was trying to pump the stuff out of him -- and he died the next day. Lord knows where the attendants was at.

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Shorty McVeigh knew what was going on. He knew. But there's only so much that he could do. He used to like me a lot; he used to take me around to make rounds with him. I think I was his favorite. Not that it was favoritism -- he had another person that used to go off, get upset, and he used to take him around too on the wards, so that would kind of help him a little and after a while he got used to it and he kept kind of quiet.


Well, I was tired of going on punishment wards, scrubbing cribs and cleaning up mildew and scrubbing benches and stuff. I used to just scrub cribs all day. I got tired of it.


But Shorty McVeigh used to take me around on the wards every time he would make the rounds. He said, "If you don't stop doing this, you will never get out of here. You will always be on punishment wards." He said that, "Your behavior wasn't too cool." I listened.


Yeah, Shorty McVeigh was like a companion, a friend, that I could talk to, that could understand things about a person; he could really seek out things -- what was going on. He was a supervisor. He'd sit down and talk with me, talk about different things, things you should not do, things you should not have done.


"You should not go on a punishment ward. You're too smart for that. Don't make me put you on a punishment ward."


Well, it learned to me this was my doing; this was my behavior; that I was placed in there just to show me to stop; to cut out my behavior. Shorty. . .Shorty McVeigh. I liked that. I was acting like a child. Shorty McVeigh helped me with this.


And I stopped it. He coaxed me and said, "That's not nice, to break windows and do things like that. You doing harm to yourself, instead of helping yourself to get better." So he talked to me and tried to encourage me; he took me around in the wards with him while he was making rounds. And I stopped.


It took me a long time. I was trying to avoid things when I was there. But it's kinda hard to avoid things, because you hear a lots of things. You try not to let it bother you, but sometimes in the inside of you it builds up anxiety; that tension builds up, that you want to go after somebody. They're saying things to you or about you; they're doing that. But all the time Shorty McVeigh would say, "You can't do that. Don't do it. It's not worth it. You'll get punished for it. It's not worth it. Just let it go."


It took for a while -- months and months and months; years and years -- till it changed; till I said, "This is it. I'm tired of it." So then I behaved myself and didn't do it no more. I decided myself.


I remember we had a very big snowstorm and Shorty McVeigh used to made us go out and shovel snow, make the paths. "Well, maybe I'll take you for a ride in the car somewhere." That's what he used to do. He would take me to his house and show me his big garden. He had a nice garden up there; he didn't live too far from Pennhurst. He showed me around and he brought me back.


At the time he passed, I did not go to his funeral because things was very upsetting to me. There was other people, other patients, that went to his funeral. But I didn't go. I could've gone; I decided not to.


Well, I stopped being afraid as I got older. Things was looking up for me, that I was going out and going home and getting out of Pennhurst and being with my mother. And all of a sudden it just stopped -- just like that.


I used to go to the dentist; the routine was like once a year; they cleaned my teeth and I had a lot of cavities filled. And I had teeth broked -- cracked. That happened in the patients' cafeteria. One of the persons threw a stool because he was upset and cracked my tooth. He wasn't upset at me; he was just upset in general. And I had to go to the dentist. I had nosebleeds that would just start; I went to the 'spenser to make it stop. And I remember fighting. A little boy would always call me names -- "knucklehead" -- and I would call him "stupid." That boy beat me up; I beat him up. My lip got cut and they had to suture it up. I told them I fell down steps, so I won't have to go on the punishment.


I had a very bad cold, very bad cold, I hadda be admitted in the hospital. I had chest X-rays; I had a fever, a cold or something in the lungs.


And my ears would be ringing, just be ringing. I don't know what for. The doctors say there's nothing you can do about that. They still ring.


They used to spray people with bug juice -- what's it called -- wintergreen, for the little bugs that crawls around -- lice. They spray you for it. We stand in long lines and they sprayed us in the locker room. They put it on your penis. And you had to suffer with it. And that stuff burnt. That's what they did. And then we all had to take a shower after they sprayed. And then anybody got caught doing anything would get more punishment.


Shorty McVeigh's wife used to work at the laboratory. She was the vampire! (I didn't call her that.) She used to take blood and then she used to work at the morgue room. She knew me. She used to draw blood from me all the time. She would take the blood all the time because I had gonorrhea, syphilis. It was from other boys having sex with me. They kept me on the hospital ward about six weeks on penicillin, til I got rid of it. It was a couple times. Those boys wanted me to have sex with them. Eddie T. the most; he got caught messing around with some girl, a crippled girl, and the parents sued Pennhurst. Eddie T. tried to help her out of the chair so she could have sex with him; broke the inside her, her vagina, and they sent him to court for doing that. He had to go to jail; I don't know what happened after that; we didn't see him no more.

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I had a friend, long time ago, but he got killed. He got killed on a second floor landing.


He was a good friend of mine and we used to talk about the good old days. Back way, way back before -- he would tell me about things happening way back ago, before I came. He used to talk about Mr. William P., the superintendent. He was the bad guy. He would send people to the punishment wards and they got hit over the head with clubs, with bats, and broom handles; he didn't care. He was long gone when I heard about it. It used to be rough up there. Yeah, he was a friend of mine. Me and him used to go up to Pottstown together. And something happened and he got killed. This friend of mine got hanged, he was tied up and hanged. They found the rope around his neck. They used him, he was abused, sexual abused. They tied him up, with his hands down, back of his arms, his feet all tied up, a mouth gag. He tried to holler for help. Nobody really came to his rescue. And next day he was dead -- the rope was so tight, they couldn't revive him. I don't know from the day how it happened.


It was not an attendant; it was probably one of the patients up there.


They found him the next evening, found him dead. Twenty-four hours the man was dead, deceased. And nobody knew about it until a nurse made her rounds down on each floor and came up on that deceased, dead man.


Mrs. B. came above us and she said, "I smell something strange." She went down on the back fire escapes. And so they found that body.


And that's when they did the investigating of Pennhurst. That's when they took a very serious look at that. That's when first came open up the case about Pennhurst. And I think that is a very helpful thing that they did to try to move, to look into that direction, and to try to fill that gap to look to see what can be done.


They had the State Police in up there. They talked with other residents. I didn't see it, but I heard it. They didn't talk to me, 'cause I was working in the 'tendants' cafeteria.


Then Dr. Potkonski came along, Leopold Potkonski. He kind of changed things. He knew what was going on, because he worked down at Norristown State Hospital. He was the Superintendent down there. He kind of tried to phase out people that was doing these things. But it still kept going on. It still happened. It was no change. He was just probably one person to do, to handle the whole loads of these places. But it's kind of silly to come with these places, to be institutionalized. I believe that I don't feel like no one should be even in an institution.


I remember the first ward that I worked on. I was about seventeen or eighteen. It was snowing; they had a few staff persons on M-1, but they didn't have enough staff persons to cover that ward. When it was cold and snow they didn't have staff -- one of the staff had to work overtime; they couldn't get another staff to change shift. And we had to sleep there when there was no staff.


I remember he said that, "Roland is my workboy this week." There'd be eight or seven people worked on a ward, but we never got paid for it. The staff person just watched, just watched, the head staff person. Patients used to do all the work.


They helped to change the babies. So we had to bathe them and wash them and brush their teeth and stuff like that. Now these are people that could not able to take care of themselves. These people who had low grades used to wet the floors and I had to clean them up; I had to get in the showers with them and give them baths. Somebody had to do it. I would get in the shower; they might even be messing on themselves. I felt sorry for them; they couldn't help themselves. That's the first job that I had at Pennhurst.


And then they placed me somewhere else. From M-1 I used to work at the U-2, helping feed patients up there. The trucks would come around, the food trucks, to every ward except the bright boys, to all the low grade wards. The patients that used to work in the dining room, they used to take the food trucks out; filled them up with soup and mashed potatoes -- whatever they had.


There was people I used to take care of, lot of people; I don't know their names, but I had my hands full. It was a nice thing to do. That felt like you're helping somebody else that they can't not be helped. I was pleased to do that. People could not feed themselves.


Whatever they need me to do: when they was short, I helped. I used to feed the babies. I used to work up on the hospital ward. They had little babies with big heads; one child, one guy, one fellow had a big head; he couldn't move; we had to turn his head over, turn him sideways -- so he wouldn't get sores on his back -- and change diapers, change the sheets, and feed them with a spoon. It was pretty hard to feed 'em. But we fed 'em. They was laying down; some of 'em could sit up, and some of 'em couldn't.


I saw a patient got burnt in the hot water in the tub during the day all over his body. The water was hot and they didn't do the temperature. They had the doctors look at him and they sent him over to the dispenser. And they put some salve on him and bandages. It was terrible. And somebody died. I remember they rolled the person out in the hallway and the doctor pronounced them dead.

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I worked in the barber shop; they showed me how to use the 'lectric clippers. I was going around the colleges cutting hair, shaving patients' faces -- those who couldn't shave themself. I had a apron and a shirt and a pocket where you put the comb and scissors. They would have the razors on the ward. I had to hold people, lower function ones who couldn't keep still. Not all, but some of them just couldn't keep their hair combed; we cut their hair down to we call it crew cuts.


I remember I was going around the colleges, the wards, cutting hair and shaving, and it came on a special news bulletin on the TV that Dr. Martin Luther King got shot in Memphis. People was sad out there; they was very very upset that he got shot; they was crying, the patients was crying. I was crying too, 'cause he was trying to help people -- poor people, black and white -- out: to be equal. He fought for civil rights. They didn't let a colored lady sit up front and I guess that's how it came about.


And I moved from the barbershop over to the storeroom; we used to get supplies ready to go on colleges -- chewing tobacco, smokin' tobacco, shoes. Trucks would come in with big boxes of cereals, frozen vegetables, and we would shoot them down into the kitchen, would put them in the freezer, and the dry stuff, like sugar, we would store them in the storage area.


I had bosses there; they was 'tendants. I liked to work with anybody that worked; I didn't have a special choice who I wanted to work with.


I was answering the phones and taking messages; picking up little kids from the hospital and bringing them to school. I assisted the gym teacher in the summer time, taking kids to summer school and day camp and activities. They had a printing press, a greenhouse; I didn't used to work there, but on the farm. They had a farm. Shorty McVeigh took us down there. We used to pick string beans, red beets, carrots, cabbage, sweet potatoes, corn on the cob, potatoes, broccoli, asparagus, greens, and put 'em in the basket. We used to bring baskets full of tomatoes to the kitchen. A farmer guy used to drive the tractor. They had nine, ten acres. They used to grow their own vegetables. And they used to have ponies -- just to pet them. I used to work in the patients' dining room; I used to run the dishwasher and clean things off the tables. After people would leave the dining room, we would collect the dishes and spoons and silverwares, and put them in that dish room, and we would wash the dishes.


I was doing other things up there. I used to work in the laundry. We get to go on the truck around the colleges and pick up the dirty soiled linen and take 'em to the laundry. And then I used to work the back of the washing machine, where they washed dirty linen -- the sheets and towels and night pajamas -- and put them in the big washing machines. We used to put things in the dryer and take them out and sort them and put them in a hamper bag, and take the sheets and put them there on the other side, so they can be run through the big machines, starched, and then folded up. That give me some things to do; keep me busy; to get me ready for being on the rehabilitation.


And then from the laundry they transferred me to the staff cafeteria. They had a woman there that takes care of job placement. She figured where I was going to work. That was just getting me ready to go out on the outside, preparing you for the outside. She transferred me into the staff cafeteria. I used to run the dishwasher over there. That felt good, because I was getting good food in there. The patients would get horrible food: had eyes in the potatoes, half-cooked, steamed. And attendants would get very good food than the patients. In the attendants' cafeteria their food would get fried -- well cooked; their food was cooked thoroughly.


We would eat first and then we would open up twenty-five after eleven and go through until two. And that's how I used to learn how to do all this getting the salad and making food. I used to get up at five o'clock in the morning to get ready to go to work. I would start to work in the in the attendants' cafeteria around about quarter of seven. And I had to have the cafeteria clean by 'leven o'clock to get ready for lunch. And that was a big 'sponsibility. We used to put all the chairs up on the tables so we can mop the floor and buff the floor; then we would cover all the tables with tablecloths.


I would have to be at work at a certain time and work the whole day through til at night. And when I get finish, I used to walk around on the grounds, just walk around, up and down, back and forth, where the superintendent lived. Up the hill, halfway up the girls' county -colony -- K.W.-, and down the hill, down the boys' side. We used to just walk up and down the road, back and forth, up and down there.


I even worked as a messenger at Pennhurst, taking messages back and forth. I liked running errands the best; it was really fun to do that.


I got to know the switchboard operator; I used to take the time sheets down to the administration building -- the teachers' payroll. That was where the superintendent's office is. And this is where they did the hearing tests and psychological evaleration. Nobody lived there. All the offices would be closed Saturdays and Sundays. I learned by looking at the letters; they had the letters outside the building: they would tell me that, "Hey, this is the A Building." That's where all different envelopes would go: the records, once-a-month report about the school, and the census, annual report. So I used to take the messenger's envelopes to different places. And answer phones.

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We never got -- nobody I know of -- never got paid, not actually paid money. We got tokens that we would go to the canteen and buy things with the token. Unless you went to the canteen for them or store to get a cup of coffee or doughnuts or whatever -- they would write a piece of paper what they want; we would bring it back to the staff; they would give us a dime or a nickel or a quarter. Never got paid. Nobody got paid. They would work, work, work, work -- never see the check up there. Nothing.


I used to work in the P building. When the visitors used to come, we would wait for them to write out a slip and they would give me a slip to take to the wards and get their sons and dress them. You would have to dress them and bring them back to their family. They had like nightgowns on -- the low ones -- and they had like underwears. We would get them and take them to another ward to get their regular clothes on. I would take the note there and another staff would give them clothes. And we used to get tips. The visitors would give a tip; you could earn some money. That would be like your allowance and you save it up, get a radio or TV or something, if you want it.


When my father retired off his work, I used to get part of his disability money; they would send me a check every month; the Social Security would send it, 'cause I was eligible for part of his Social Security. I was the only person in the family could get it. My mother told me that was because I was the only retarded person in the family that could get it -- disability. He took a heart attack on the job and he couldn't work any more. The doctor told him he couldn't do that heavy work, getting underneath the cars, and breathing that stuff in. I would get a check. They stopped giving tokens and gave me real cash money. They would type my name on the paper and we would get paid every Thursday evening. Not from the job, from SSI; I would request how much I want.


They moved me around. I would work in the mornings: all day in the morning, all day in the evening. There was different jobs. I was too old enough to go to school at that time; I graduated, in other words; and I got older. They would try me on different jobs; get me ready for the outside. Some people had one job and they stayed with their job, I guess, til after they left. They was just trying to get me prepared for the outside. They switched me around to see what type of job I could be suited for. I did well.


Once I walked off the job -- I was so depressed. Oh, I had enough of Pennhurst! Oh, yes. I just walked up and down the corridor on the hospital ward. I had cut myself and they had to suture me. I was just scared, just frightened. That's true. I would be frightened, very very frightened -- what next I would do, what next would they do; what next, what next. I been on every ward that they trained me on; I been on everything -- I did from bathing, washing dishes -- dishwasher -- working in the barbershop, working in the laundry; and I did mostly all the things that they taught me, so there was no need to train me again. I walked off the job because I was just depressed.


They moved me down to Penn Hall 1 and I lived down there for nine months. That's more like getting ready to go on the outside, to live in the community. They teach you how to respect other people. And they told me how to save money and they gave me a town pass. There was no attendants. We was doing it all ourselves, taking care of the house and making sure the house is kept clean. There was attendants come over, used to take a rag and see any dust or any dirt on the dresser, on the window sill. Every time we would get a star for it, for excellent; and if it was dirty, we would get a red star, meaning it wasn't too cool. We had to make sure our clothes was washed. We used to get our food from the dining room; we would put an order in, send a list over to the dining room and we would pick up the food from the dining room.


It was very nice. Nice attendants. We got some hobbies; we made some stuff, turkeys and vases, out of clay and you put 'em in a kiln and we paint 'em and spray 'em. And we'd make ashtrays out of records, melt them like that.


And then I was moved to Rehab 1 up there; it used to be a white house. And they used to train us to cook and make our own beds and go out to work every day. It was teaching you how to be more independent. And it was very nice being on independent without somebody looking over you.


And I got myself better and better and better. Getting better means getting things more sharper like -- I got a sense of what's going on. It took me a long while to think why I was sent there, why I was put there at Pennhurst. I gave my mother so much problem. It took me a long time to understand it. And it dawned on me as to why I'm put there in the first place at Pennhurst: they had nowhere else to put me, so I had to go there. It taught me about my life.


I thought that the doors would be open one day, back open for me to go home again; it might be a day, as I got older, that you might be get out.

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We used to get town passes and go into Pottstown, shopping or watching the movies. I would eat up in Pottstown. There was a diner I used to love so much up there; people used to know us from just going back and just eating. Would be two of us going together.


I had a girl friend, Shirley R. I met her in the school building. She was coming to school and she would stop me for different things. She would stop me in the school yard and she would ax me do I have any money. And I said, "No, not this time." And she said, "When you gonna get some money?" I said, "I don't know." So I said, "When I meet you again, I'll have some money."


And she would ax me: "You want to be my boyfriend?" I said, "Boyfriend? Naa, c'mon -- you're putting me on." And then I just said, "Okay."


And then we dated; we went places -- Pottstown, and stuff like that. I would walk her back and forth to the girls' county. We'd kiss. I'd be kissing her and going around with her.


She used to work in the 'tendants' cafeteria along with me. And I just used to help her out. I used to give her a Christmas present and wrap it up and give it to her. She give me a Christmas present; it was a shirt and gloves. I gave her a radio. And things like that.


And we talked in the school hallway. She would try to get money out of me. She'd ax me, "Do you have any money?" "I don't got no money this time -- maybe next time." She would just keep coming to me about money. And every time I'd bump into her -- "Roland, you have any money? I need to buy something." "Well, I don't have any money this time." And she says, "Oh, please -- you got money." And she kept forcing it out of me. So I gave her ten dollars. Every time I would get paid, I would give her some little bit of money to help her.


And she would be bad in school; she would sit in the principal's office. It was just something. Yeah, she liked me. Me and her used to go skating together, up Pottstown. Well, the girls'd go first and then the boys would go last; we'd meet together up there.


We used to dance together. They had the canteen up there. I used to buy candy and hot dogs and sometimes french fries and hamburgers. I would meet her at the canteen down on the boys' side.


Me and her got along very good, but it was tough for both of us. She would make you laugh, she would; she would make funny jokes. I had nice hair; I had really bushy hair like Michael Jackson when they was small -- bushy hair, long hair -- I left my hair grow. And she would laugh: "Why don't you just get a haircut? Get a haircut?" And everybody would laugh at me. "Oh, look at this; look at this guy; look at this young boy -- he looks like Alfalfa with his hair all crooked up." I think she meant Buckwheat. And she would tease me and her friends would tease me, "Look at that boy." I just got a joke out it. "What are you teasing me for? People's wearing their hair this way." Bush. My hair would just grow out and it was just like bush. My mother come up and see me and she said, "Next time I come up here you better get that hair off." The attendants didn't care -- it was your hair. But sooner or later I hadda got it cut: the barber said, "I couldn't get through all this hair on you with the clippers." I had a comb; I had a part in it and waves.


And we used to be kissing in the hallway in the school. She was a tough one; she was a cookie. I liked the girl. She liked me. I don't know if she just liked me for my money, or what. But I used to talk to her a lot for a year, two years. She would meet these other boys -- I think she was using me, to get money out of me. You know how girls are. Oh, I was about seventeen; she was about eighteen. She'd come into school after I had class; she would meet me in the upstairs hallway. And then the other boys would get jealous. They'd say, "Why was you laughing? Why are you going with him for? He doesn't look right for you! To me, he doesn't look right you going with him. You ought to go with me." I didn't want to get into that, so she stopped seeing me and I stopped seeing her. She would write letters to me. And I would -- 'cause I couldn't write -- I would get somebody to read the letters for me. She says, "I love you and I want you to be my boyfriend." La-la-la. . ."When we get out, if we both get out, we can meet each other," 'cause she lived in Philadelphia. We used to talk about good things -- how we're going to get out: "If you get out before I do, would you give me a call? And if I get out before you, I'll give you a call. And write to me."


Right now, to the day, I don't know where she is. Because I didn't have her address. She was sent there under a court case as a child, sixteen years old she was. She had other sisters; they couldn't get along together. That was about all that she told me. She left first and then I left second. I think she went back to her mother at home. We said that we would call each other, but we never kept up with it. I didn't see her after that. I did say that I would try to stay in contact with her, but it was very hard, to stay in contact with her. She gave me her address and I lost it in the shuffle, because when I left Pennhurst my mother and father came and got me and I lost the book.

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In order to get your town pass it had to be two people. Two people would go together. My name came up and they just gave it to me. I had a friend with me that showed me how to do that. He was walking with me and I was following. We would walk outside and down the road and wait there and the bus would come. You would show your town pass. The bus driver would know us, because people from Pennhurst would go up there every Saturday.


I did run away from Pennhurst couple times. I don't think it was called runaway; I was just going to the store -- a bunch of us used to sneak off the grounds. I remember I snuck away on the railroad track to Royersford; it was real cold -- real low to freezing mark. We walked down to Spring City -- me and some other friend of mine -- bought ice cream, and snuck back before before eleven o'clock, before the other shift came on.


I was lonely at Pennhurst, all the time. I was always wanting someone to come and see me to talk to. I was very, very, very, very lonely. I wonder why I went to Pennhurst, but things came to me while I went to Pennhurst. I never understand it until I was around eighteen. I understand it, when I was at Pennhurst. That's why: because I did some things that I should not have done. It make me sorrowful and grief. It helped me in some areas but it didn't help me in other areas.


Pennhurst didn't meant nothing to me. Pennhurst was me with sorrows and grief. I didn't like it at all.


. . .


That's when I got my life back together. I was confused in a lot of areas, running from one boarding home to another boarding home to another boarding home to another boarding home. I got myself straightened out through North Central: they put me in a CLA -Community Living Arrangement -- K.W.- and Mrs. Willie May Samuels thought that I should be in a day program since I didn't work then. It was a partial hospital day program, a mental health program, like a psychiatric day program to get people to get theirself better and go back out in the community. Well, it helped me to better myself.


The patients they ran it themselves; they set up the program. It was a day program that you had to go every day start from 8:30 to 3:30; you could not sit at home. It was right across on Lehigh Avenue; there was a restaurant downstairs. At the end of the morning meetings we had broke up with small groups and we'd go from ten o'clock to quarter to twelve and we would talk about our problems, emotional problems, or whatever problems that you had on your mind. We would all come back together and eat lunch together. It would be ten people in different groups. The patients would run the morning meetings; they would have questions of whatever they had on their minds. And we would talk out our problems.


I was shy within myself. I was scared when all these people come around. I remember that, being shy. I just forced myself. I talked in the groups and they listened.


Some people would get up and talk about their life story, how they got into the program and how they got in trouble. These were people that had been on drugs, people had emotional problems, alcoholic problems, problems with the family. These are people that could not deal with their life. And that kind of helped me; that kind of put things back to the place.


Agencies was moving around a lot; North Central phrased out and Comprehensive took to over for a while. That's when I heard about Speaking for Ourselves. It was when my life started to change around.




The organization already started when I first heard about Speaking For Ourselves. I was working at Germantown and Lycoming workshop. I was a janitor at that time, outside the workshop. It was a man named Russell Donohue; he had said that there was a conference going on at Valley Forge at the Holiday Inn. He probably got it from a literature that they had. He was telling everybody, so he axed everybody who wanted to go to raise their hands and I raised my hand that I wanted to go. So we made a list and went to the conference on their big van.


The conference was a whole bunch of people that I didn't know. And I heard all these people talking about their life and I remember Domenic Rossi standing up there saying, "We need to get things together; we need people's life changed. It's time to do and not talk about it -- let's do it." And Luann Carter was running the conference; she was the founder of Speaking For Ourselves. They started out real small. They had a small little group -- it was just Mark -Mark Friedman has been advisor to the board of Speaking For Ourselves since its inception. -- K.W.- and some other people -- and it grew and grew -- started in Montgomery County, then Bucks, Delaware, and Philadelphia, and Chester.


That very first conference I was wearing jeans. I was working and I had these dirty old jeans on; they wasn't dirty, but they had spots; I was scrubbing the floor and I was stripping the wax off the floor, the old wax, and putting down fresh wax. I had my work shoes on. And Mark says, "Who's that guy back there? Who's that guy back there, standing up?" I just stood up in the back and said, "We have to make some changes!" in front of a whole lot of people. I was always talking about it, 'bout getting things changed, mak-ing things more better for the clients. Wasn't for me. Was for all the people that have disabilities. I was just thinking about it. And nobody told me to say. I just was thinking about it -- the system needs to be changed. So I just stood up in the back and said, "It should be changed. We're tired of the old system. We're tired of the system that we have now. We need to make things change, to make things happen." And that's when I first met Mark Friedman.

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I went to the night school; I was in a CLA program. They had mental retardation night, Wednesday night school at Girl's High: how to read, how to write, say your letters, ABC's, and stuff like that. And Nancy Nowell -advisor to the Philadelphia Chapter -- K.W.- came to Girl's High. Nancy explained that Speaking For Ourselves was for people with disabilities -- to get their rights, be heard, and speak up with whatever is on their mind. Well, they couldn't find a room to hold their meetings, so they had it at Girls' High, Broad and Olney, downstairs in the classroom, a kitchen like. So I went down.


It was a lot of people; it was very lot of people. I don't know how many that came. And Eleanor Elkins, -an internationally recognized parent advocate -- K.W.- she was there. And Nancy Nowell. I thought for a while that they was running the organization, be-cause Eleanor Elkins has a son that's retarded and I think that she wanted more things better for her son and better for the organization. But I don't think that they was running it; they would want the members to run the organization.


I went for a while. And then I stopped going for a while.


And then they switched it over to Osteopathic Hospital out on City Line Avenue.


And it struck me that these people was saying things for themselves, speaking up for themselves. I knew that they was going to nominate me as president -- I thought of that myself -- because I was the person that was on the ball, had the skills, had the know-how.


And the group voted me as the president of the chapter.


Domenic was the president of the Board of Directors for the whole organization. I would talk to him on the phone. We would talk about how would I get my chapter more involved, to make the things happen in the chapter. We talked over hours on the phone; he helped me, I helped him. So that's how I got involved in Speaking for Ourselves.


We had to talk to people at Osteopathic -- could we use their space. Nancy and Mark and me went. We didn't have to ax them for chairs. They said, "You can use whatever's in there. You take the chairs and use them." We put the chairs back like they had them after we left. It was the president's job to appoint somebody to do that; sometimes I would help to do it. It was very pleasant to have us come there. Sometime twenty or thirty people would show.


My job was to make sure cards, notices about the next meeting, got out. Me and Nancy wrote out letters to get people to come. Mark had a computer; we could get the names off the computer, but we had got some more, new people. We had to go out and make ourselves known, that there is an organization that exists, that there is a Speaking For Ourselves. We send members to go out and speak to the county office and the state officials to talk about whatever was on their mind to talk about. And that's how I got to go to these places.


Speaking For Ourselves helped me to be more talkable, more open, and more understanding. At the time I was afraid of people. I was scared of people. I didn't like to share things with people and I didn't think that they would listen to me, whatever I said. I thought that the organization was a very good organization. Speaking For Ourselves was like a friendly organization -- more home-like; it was an organization to come to to express yourself. Speaking For Ourselves had open my eyes to be a better person and try to help other people. There is joy for something for everybody to do, that everybody want to do -- always something involved, that I'm involved with something, constantly something to do, like going to meetings, setting up meetings, going out and talking to people. I like to give more into people, more express to people that Speaking For Ourself is very good and people need to be involved. I just try to help people and give back into the community. It just came naturally.


It wasn't hard for me. They listened pretty good. I knew how to kept order 'cause I'm always pleasant. I was pleasant with them and I said that, "If you want Speaking For Ourselves, you have to do the things that members do: this is Speaking For Ourselves and you have to talk up." And so the people was quiet. I got them talking, got them to talk for themselves, to speak for themselves. I made people get a chance to talk and say whatever they got on their mind. I said, "Would you like to talk -- whatever is on your mind: what happened in your group homes or what happened in your CLA programs. You're here; what you say here stays here -- it'll never go out." That was our policy.


The chapter meetings are just very informal. They talked about jobs: they wanted jobs; they didn't want be in workshops, they wanted to get out on their own, 'cause they don't make too much in workshops. They talked about transportation; transportation was the big issue. Every time we have our chapter meeting, it was "How will we get to our chapter -- we don't have transportation." We had a young girl come in from SEPTA Para-transit and talk about how can we make Para-transit better for people with disability; how could we make transportation better for them. And we talked on and on about different things.

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They would talk about what things going on in their life where they live. It would go on about an hour or so and then we shift it onto another topic. We would talk about, "I wasn't getting along in my CLA, because I was being abused by the system" -- problem solving.


The staff would find out and the director would find out, some kind of way -- you can't help it. "Well, you went and told them people that you did not like it here, so you don't go to that meeting." That's what would happen. So we would be losing our attendance.


It was my job to make sure that everybody get a chance. The thing about it was, they looked up to me, that "There's a man is giving me a chance to talk." They looked up at me. I don't know what they looked up at me for, but they looked up: "There he is." So I said, "Come on, talk. Don't be shy. Talk. That's why we're here for. Talk. Anything that you got on your mind, talk. Talk about it. Whatever you talk about in here, stays here; it will never go out nowhere else." And they talk about problems that they have every day, that they have on their minds.


Some of them talk about they didn't like their home, their living situation; they was not being treated well; the staff overspent their money, took their money. They talked about, "My staff hurt me." I know a guy came to our chapter and he talked almost over an hour, talked about a specific staff person that he didn't like. "I want that staff person moved out. I don't like that staff." It was very hard putting the pieces together. Very hard.


Well, I told him, "If it happens again, you bring it back to the chapter, and we'll. . .we'll fix it for you. We'll get somebody to work on it." And he brought it back and we moved.


I remember telling one of our members, "You know by not joining Speaking For Ourselves, you would not better as you was gotten better today? When you first came to Speaking For Ourselves you was quiet, in your little shell. But when you got used to Speaking For Ourselves, you really talking now; you really expressing yourself; you really coming out of your shell."


And they really did! And that's where it showed me, helped me to understand a lot of things about this organization. They had some power behind the organization.


Nancy axed me, "You might want to come out and look at the Board of Directors." So I came, one Thursday. That's when they had their board meetings, once a month. These was held at Plymouth Meeting Mall. I was still a chapter president. I went to the Board of Directors meetings before I came to be president. And then when that chapter president was ended, then I went to the board. And that's when I guess I got elected as president at the board. I was appointed by the Board of Directors as the President of the Board of Directors of Speaking For Ourselves.


Domenic was the board president before I got to be president. We talked together. Yeah, I went to him; we had several meetings about what should I do. I didn't know nothing about the role of being a president. So Domenic taught me about being a president. The board had a lot of things to do: keep the minutes and keeping people on time. He said to keep order and make sure the records are straight before they audit it and how to do Mark's evaluation once a year. He said, "You got to work with Mark; he's a hard man to work with; you got to hang in there with him; you got to keep him on target on everything." So I took his advice; I kept Mark on the ball. "Come on, Mark, on the ball. Stay off the phone." Domenic meant that Mark just talks a lot and can't concentrate well on a lot of things. He gave me some strong advice. We got Domenic a job as the treasurer, taking care of the books, writing out the checks and stuff.


The board meeting went from six-thirty to nine o'clock. Usual, we would be out of there by nine. But it was just talking about business, what to do. When the first time that I was president I said, "Gee, I don't know if I have the skills to do that."


We was closed out for the summer and when we started back up in September, we only had a few people come to the board and I said to Mark, "Where's all the members? Where are the Board of Directors? Where's everybody at? I'm kind of scared. Did I do something last year that made it something different this September? Are they scared because I'm a black person? Maybe they ain't showing because I'm a black colored person. Maybe that's why they ain't all showing, because I'm black."


He said, "Oh, that's not it. That's not it at all."


"I don't see them; I don't. I'm the president and I'm kinda scared. I don't know."


He said, "Maybe they had something to do; maybe that's why they didn't show."


"Maybe. . .Maybe so."


And I was so nervous, shaking in my boots. That here am I -- I'm in this board meeting, all by myself, and nobody shows up. It was only me and Mark and Nancy and Domenic.


It took me a while to get over that. Mark got me to pay attention of the presidency, to talk to people more and stop being shy. I got over it; I didn't think of that for long. Like I said, I had courage enough to do all this. I said, "We just do this, Mark." And it was faith, my faith: This is going to happen. Sooner or later, this is going to happen. No doubts. It's going to happen.

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Very hard to express -- to see a colored person being something of a leader of a organization like Speaking for Ourselves. Was the first time for a colored person, being a colored president of a board, of taking in charge of something that he never had tooken charge. And this is something that I looked forward to being someday -- the first black colored person that has a handicap disability would help to steer people in the right direction.


We had to call everybody up and tell 'em that it was very serious; that you had to come; there's some things that we have to talk about. I told 'em, "Don't do that again; 'cause this is very important meeting that we have to talk about and we have to get things organized on the board level."


I helped changed things around.


People had been getting up going to the bathroom interrupting the Board of Directors while the meetings was going on. And I said that we could not do this because I can't function while people are going to the bathroom -- that's not how a board of directors should operate, people getting up and going to the bathroom and running around, giggling, and stuff like that.


I had been to other kinds of meetings in the partial hospitalization day program. It taught me a lot -- how to conduct a meeting, how to select officers, how to focus on different things. And people could not jump up and go to the bathroom, getting up and just being outside in the hall -- that does not work that way. I learned that then.


I talked with Mark about that, that we had to do some changes, or else when people come, they'll say, "Hmph. I don't know about this. I don't know about this board. That don't seem like a board meeting to me, with a lot of people running around up and down." I had told Mark that he couldn't get up and go to the bathroom because people see that and they'll follow him, because that's not being a good example for them. Suppose somebody comes in, somebody from the State, and everybody goes to the bathroom; that wouldn't be fair. Or the President of the United States -- you invited the President -- that wouldn't be nice, running out. So you have to maintain some kind of order in your board of directors meeting.


It was a struggle to make the board understand this. We had to get this in place before my term ran out; if we didn't, it would be the same thing happening as we didn't do this, put this into action. It was very serious. I was very serious about putting this thing into action, getting the board on the right track: stop running to the bathroom and sit and listen. It took two months to get get my act together.


I went home and think, then I call up Mark and I said, "Well, you know, Mark, sometimes I'm thinking I'm too bossy. Maybe people won't believe me all the time; maybe they don't know what I'm saying."


Oh, it was big headache to make this work; it wouldn't work it. Something was gonna fold or they would elected another president.


But we did it. We did it together.


I was the type of person that's strict, very strict -- but pleasant -- to make it run more smoothly. Whatever I said, went. Well, maybe everybody didn't agree with what I said, but some of it slowed down. I taught them what I taught them, what I learned. And they looked up to me as a leader. So that's how things changed.


After two years I got them to settle down. I told them that you have to stay focused on what you're doing and you have to listen to the president. The president's in charge and you have to listen to what's on the agenda. To make a good board leader you have to make people listen and stay focused on what you're talking about. I said, "We're not going to get up and down and run around. We're going to concentrate on the things that it's on the agenda."


Whoever came, that person would think, "Well, hmm. I never seen any board meeting 'ducted that nice. They conducted themselves very nice; it was not emotional." That would help them to understand, that would teach them, it would say to them, "Well, there are handicapped people out there can do things, can 'duct a meeting and can hold conversations, can do more things that other people cannot do."


I talked with Mark after the board meeting, a couple days after. Mark tell me, "People look up to you. You got power. You know how to do this and you got the know-how." Made me feel good inside; made me feel -- well, somebody was supporting me.


And I never forget the day that Patty Sommers -an advisor -- K.W.- says, "You are very tough. I don't know, you're just a tough person." Well I think she like how I conduct the meeting, how I said, "No, you can't do this; no, you can't do that. No, you got Step 1, Step 2, Step 3, Step 4." It was just something. Amaze, how I did it.


A Board president has a lot of things to do, to keep focused on. We're bringing new ideas to the Board. The reports have to be right; policy has to be right; things have to be in order; you have to lay out the things for the Board of Directors.

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My personal life changed a good bit. It helped me very a lot to understand myself, to understand people better, but I still had struggles with it sometimes. It was very, very hard path to follow, to get this together, be committed, and follow through what you're doing. I had to follow my own guidance. People tell me, "You didn't need no guidance because you already had it" -- had guidance. I had a little bit. But it changed a whole lot for me.


It made me a lot busier. Made me go to chapter meetings, make sure that things was running right, running smooth, when I was president, and keeping on tap on Mark, making sure Mark got everything in order, making sure the records was taken care of, reports for the Board and stuff.


I talked to the people at Woodhaven. -a large state-owned dilution -- K.W.- They wanted me to come to their in-service. I told them about what Speaking For Ourselves is all about. I talked about how people abuse the system. I told 'em that we don't need to use shackles, because putting people in restraints does not help the matter, does not help the situation, at all. Throwing them down and holding them down -- it doesn't help. You got to use other methods, other ways, to try to make the client understand the right from wrong. I thought I got my point across to them, to them officials, that these things needed to be straighten out, that people need to be out in a community. Because dollars are spent in an institution -- every head is in an institution, a dollar is spent there and not in the community. And where the dollar should be spent is in the community. The services need to be in the community and not in an institution.


Everybody really applaud and came up and told me that I did very good -- told the things they want to hear. They told me no other person could stand there and say all that.


I went back and talked to people when the closing of the Pennhurst. But I didn't go back there to talk when people was still there; they didn't ax me.


I don't have preparation; I don't have a written paper or nothing in front of me. I just get up and say things that come, what's on my mind. I use things in my head; it just comes; I just use whatever comes out: I got this from the day program. I went out and spoke to some people, and that's how I got to speak more.


Mark does help other people; he lets them think about things themselves, then first he talks to them and then he gets them geared up: "Now remember what you say; make sure you say it plainly and sharper, so people can hear you clearly." He writes stuff out for them -- those who can read.


I was scared when I was first going out and speak in front of people. It's like shy. What would I say to these people? What would I say to the county administrators? It was kind of scary. After I been doing it for a while, and kept doing it, I broke out of that shyness and keep focused on what I'm saying.


At the time I was working at Comar, -a community mental health center -- K.W.- before I went to Eastern College, St. David's. The director there said, "If you want to go, you can go, but you have to let your you boss know." So I let my boss know. I had to get things in writing and let them know two weeks ahead of time and then they let me off. Then I had some vacation time 'cumulated and so they let me take that, half of it.


I remember getting the job at Eastern. We're out looking for a conference site. I told Mark that, "Hey, this is the place that used to be ARA and then they switched it over." They had a new food service company; it was Marriott. So I said, "Hold it, Mark, maybe I can get a job here. Maybe I can get my job back." I liked it so much. So I went in the back and I 'plied for the job and the boss called me the next day, "When could you start?" So I started the next day. I stayed there for five years. Comar didn't want me to leave. I used to do maintenance; this was a day program. But I said I could not put up with that stuff -- things happened to clients there that I seen with my own eyes: staff would hold a person down; it made me so upset; I just feel like I'm back in an institution.


Marriott was very hard to get off because my boss said, "You can't just go being travelling all over the. . . -- because I need you here." After I sat down and told him what I was doing to help people with disability, Ed was very pleased about this. And after that I got time off; he really took a lot of patience and time to work with me.


I have to get up early in the morning to get there at six o'clock. I have to take the bus from my house and get the subway and ride to City Hall and get the train to work. I had to walk pretty far. Took me three and a half hours. When it rained and snowed, it was just a hard struggle to walk in. I'd get home around 'bout nine or quarter to ten at nights. But I liked the place. My boss let me come in early and leave work early to go to board meetings. Ed Collins was understanding. Straightforward: "You have to be here on time. And if you don't, you don't get paid or I'm going to clock you out."

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Somehow, I don't know, I convinced him he had to come to the Montgomery County ARC meeting. I told him, "This is something special." So he came. I got a reward and he heard me giving a good speech about employers hiring people with disabilities. And he was amazed about it. He says, "Gee. I had a good time at the banquet." He never been to anything like that. And he said that he would hire some people with disability. That was good. He said that I showed him that they could work as hard as anybody else had.


After when I came to be president, the first time I travel anywhere to speak it was Erie. They wanted to hear about Speaking for Ourselves -- "How we can get a chapter started out there in Erie Pennsylvania?" So we went and spoke to them. We had to travel on a big plane and then we gotta go on the little plane. And I said the same thing: "How you could get a chapter started is you gotta find a founder, somebody like Luann, that is really want to dedicate themselves to being a founder." They would ax me how was I when I was a child; "How did you get active in Speaking for Ourselves?" and "What made you be part of Speaking for Ourselves?" And I told 'em that Speaking for Ourselves gave me a different outlook, appearance, in life. Yeah, we talked how do they get their people's rights and stuff like that.


I been to Canada. First time I met Bill Worrell and Patrick Worth -the advisor and one of the founders of People First of Canada -- K.W.- they axed me to come out there.


When we went to Boston, I figured that I could travel by myself and learn to see the world, because I like to see little towns riding on the train and see what they look like, different cities and the different towns. It helped me to not be a-scared that there's nobody gonna be with me to show me how to get around. And it just. . .It was a miracle. A miracle happened. Here I am -- travelling by myself! And I can do it! I'm thinking about the other people driving on the van. This is one handicapped person less on the van. I was not afraid. I remember the train conductor told me the stop was the last stop you get off and there you are. I had somebody waiting and she picked me up at the train station with my baggage and stuff and drove me to the hotel.


Experiment. Yeah. I had a lot of experiments to run.


When they axed me to Interserv -a multi-state conference -- K.W.- in Princeton, I was thinking so much, "What is going to come out of this -- all these disabled people. I'm disabled. What do they see in me? What would they see in Steve? -Steve Dorsey, a Speaking For Ourselves Board member -- K.W.- What is this all about?" I was kind of frightened about that. What do they see in us with disabled? What's this all toward? What it boils down to? And it was very, very hard to put the pieces together. It was like a puzzle.


I just thought, "Well, everybody here has a disability; I'm just like anybody else. My disability doesn't hurt anybody, because I'm a slow learner."


Then it was fun to watch, to see what was coming out of that conference. It was just people that had disabled, that they had something on their minds to tell people; they had something to say.


Speaking For Ourselves did an interview project at the arc Rainbow at the workshop. We went in there as a paid consultant. We axed the clients did they like it in the workshop. Some said they did not like it in the workshop.


The person that I interviewed said, "Gee, I could fill out them questionaires."


I said, "Well that's what I'm here for, to help to fill out the questionaires. You can ax me the questions and I'll ax you the questions -- what's on the questionaire."


So I axed him, "Do you think that you would like being in the workshop?"


And he said No, he want a real job.


I think that Denver was the very first time that I flew to any of the professionals' conferences and back. Didn't bother me at all. Meeting all these people after we got off the plane. . .Picked up a rent-a-car and then we went and checked in to our rooms. The next day it felt like that there wasn't no other disabled person here and we're the only disabled person here and fifty thousand TASH -The Association for People With Severe Handicaps -- K.W.- professionals. It feeled like I didn't belong there. I felt like I didn't need to be there. It feel like that, "Gee, what do I have to talk about? What's on my mind to talk about in front of all these people?"


And it just came out: about make sure people getting their rights. We talked about how people with disabilities have different types of disabilities, about how we could make changes. Didn't worry me at all. Nothing worried me. I thought me and Steve brought out good questions and good answers. I think that me and Steve worked hand in hand too.


We went to Oregon and we spoke there how to get the chapters started. We was giving them advice. They was just starting to think about it -- making things happen out there in Oregon. They axed us how did Speaking For Ourselves get started. We told them that Luann Carter was the founder and we had started out small and it grew and it developed a chapter in every county and been successful.

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What inspired people ax me to come -- because they thought that I had something to offer to them. They thought that I was a special person, that went out and did all this. I went to Wisconsin all by myself. They axed me to come and speak and I spoke and they said, "Gee, you talk like a very professional person. I never heard nobody talk as well as you talk." And it 'mazed me.


I would say, "Get people out of institutions. Make sure that people can get their rights. Stand up for the client; stand up for people's rights. Make sure that they get all that they can to better the system. And make sure that does not take place in other places -- CLA's and group homes -- because I been a victim to abuses in places."


I always had something to say. Whatever was on my mind, I would say it.


I would say, "Well, you can't treat clients like this. They have to be treated just. . .equal. They must be treated with fair and dignity. And you can't not have somebody tell them what to do. They have their rights, the clients have their rights too, like other people have, like you." And I kept saying that until I got it through to them. And it was very strong but I said it. And they heard. Even with the County of Mental Health and Mental Retardation. I did that with Steve -Steve Eidelman, Deputy Secretary for Mental Retardation for the Commonwealth of Pennsylvania -- K.W.-, made him understand that these the things you have to listen to. These the things you have to understand with clients. To make you aware of what the clients needs and what the clients want.


Well I have had this idea for a long, long time that I have seen people that mental retardation being treated awful in day programs and in group homes, in CLA's and boarding homes, where people been taken advantage of them. And they was not being treated fairly, the clients. I think they was being taken advantage. And that's how I got that; I think that's where I picked that up.


I think people with disabilities is being treated bad because the system, in itself, do not know how to treat people with disabilities with respect. In order to receive respect you have to give it and not take it. I mean treating people mean. . ."You got to go to bed; you got to go here; you have to come in a certain time, have to be in the house, in the apartment, a certain time. If you not tome in, I'm going to call the police; I'ma send the police after you." I think it's to scare you; I think that get people frightened that they're being watched by the system. And that's not respect at all.


I think if it was worked right, I think the client would be a better; there would not be a lot of people being in psychiatric wards and being put back in institutions. I think if they was treated fairly and people sat down and talked to them in a nice way, they would not have this. I think the system would work good, if had better staff that would understand people they work and serve with them and not to abuse them and hold them down and tell them that they can't do this, they can't do that. If they want friends to come to see, girlfriends, they'll allow to have them. And that's not given to them. Staff would say, "Nope, can't have this; can't have this here. It's our program; you can't do it." So, that's what I mean by that. And that's what happens in these programs. I've been treated that way. And other people's been treated that way in the system. And this is true.


I don't think they are bad people; it was just how they're been trained. And if they was staff had been trained better, maybe they would have a better understanding with the clients and who they work with. I think things would work out smooth, if they was trained better.


I would tell them the same thing I'm telling now: that you can't treat clients cruelty; you can't treat clients nasty. If you treat the clients nasty, quite sure, the clients are going to treat you nasty. And if you want to treat them fair and nice, then the clients will treat you nice. I don't mean that every system in the system is going to work; I'm not saying that there are clients are hard to handle. And you have to use some kind of resources. But not holding down clients and putting them in places that they don't need to be put in. I feel that's very. . .not right. It's not right. No, it's not right. The reason I say that is, it's the same way had been treated in an institution. If a person comes out of an institution, they say, "Well, this is my house. And if this is going to be my house, then I should run it like I should run it and not someone telling me what to do and how to do it." But some people don't have that authorities to say that, tell the staff, "This is my home. You working with me but you only come in and help me. You can't tell me what to do in my place where I stay and sleep." And that has been happening in a lot of them. Where I have been myself, been in that situation.


And sometimes I treat staff, if they didn't treat me well, I would treated them nasty. Not very nasty, but I would get upset. "Because you didn't treat me right, so I'll treat you. . .That's the way you want to be treated. I'll show you how I can act out. And if you don't not support me, I don't want you." So that's how I think the system is getting a little better.

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There was people who treated me with some respect. And I treat them with some respect too. But there was some people you just couldn't get through, like people say. Every time I would have seizures, they think that I would put it on, act 'em. And they said, "Well, he's not really having seizures, just let him go." And it hurt me when they said that. I felt, in myself, "Why does staff say that, if they're supposed to be helping you?" They're supposed to be paid to helping you, to talk things out.


I can 'test for that in people's programs, some programs. I mean I been through all these systems that did not treat me like I wanted to be treated. And the same with boarding homes. They'll tell you, "If you don't act right in my house. . .This is my house, you don't tell me what to do. You do what I tell you to do." And it was very hard to get people to understand that. I mean it's very hard for me to understand why they do that.


Up to this day. . .Like for instance, I was living at Elwyn -a privately operated institution -- K.W.- and I stayed out. You have to be in at a certain time, a curfew time. Ten o'clock is your curfew; you can't be out now more late. So I stayed out late at eleven o'clock, way late, and it was past my curfew. The next day they told me, "How comes you didn't come in ten o'clock. You were supposed to be here at ten. Your curfew hour is that time." And sometimes you forget. And people, they treat you. . .Why's you have to have certain curfew on you? Why they have to be in a certain time? Why can't they stay out from one to two? Why should they have to have all this curfew on them? I know that the system supposed to be looking out for their welfare, but it's kind of hard for clients to understand that.


It looks like to me it's a institution. "If you don't go by my rules here, then you have to move out, find another place. You don't like it here, you find an apartment." But you can still have somebody coming and telling you what to do in your own apartment. It's your apartment and you paid for it. Somebody's coming here and telling you what to do. And should not be that way. It's your apartment. You do what you do in your apartment once you sign that release. That's your apartment; you do whatever you want to in your apartment. As long as you pay your electric bills and keep your laundry and your place clean and stuff like that, you won't run into no problems. So, that's what I think should happen. I'm talking because I've been in that same situation that everyone is.


I think that the name need to be changed. Our members do not like the name, "mental retardation." I think they're scared of that name. Because that means they're dummies; they're stupid persons; something like that. We're trying to get that name changed. I think it's a little distriminated that people call people mental retardation. They could say something else beside "mental retardation." A person has some kind of problems up in there, in their brains. But I don't think they should call it retardation. They should call it something else. Every time I go to conferences, there are people talk about that -- that they don't want that name; they want it changed. But it's the ARC, the family, that wants to keep it that way. What the world'd be like -- it'd be different. It'll be more that we are special people in some ways. But I don't think that other name should be called. We are special because we have a sense of our own; we know who we are; we know what we are doing; we got lots on the ball. You don't treat us like animals; we should be treated like adults.


It's people's struggle today -- how to have an organization of their own. They get denied: people could not think that handicapped people could do this; that they need to be put away somewhere far away from us. That's where discrimination is coming. At one time they had not gave them a chance to express themself. Now things are changing. The government is looking at this in a different way. People are sitting with people with handicaps on boards in government. Before they never did this. This is what Dr. Martin King had really wanted -- people to live happy lifes. The world would be different. And what I mean different -- the world would be more nicer; people would understand us more better. When I say "us," I mean people with all kinds of disabilities; that they can't be discriminated against in this society that we live in. That would make me feel more happy. It would make other people feel better, not being discriminated against.


I was going out of some money and so I got 'em to pay me $300 to pay my bills. And if I'm coming to speak, they're sposed to take me around. In Wisconsin they took me around the city and a famous restaurant where a lot of cowboys, Westerners, where they're dressed up in suits, like old-timers. It was very nice; I never seen anything like that. It was cold and we did some activities while we was there. We went to this big height and it was cold and we rode on a thing that rode back and forth -- I don't know what you call it -- but anyway, it was very nice in the mountains.

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The first trip I went on at London, the People First International Conference, it was a very interesting. Oh, I enjoyed London! I never been to London.


This long ride. . .I'm axed Mark, "We're still on this plane -- how far is it?" 'Cause I usual in bed at this time and I'm still travelling.


And I said, "Mark, when this plane going to touch down?" My eyes was dozing off; I sleeped a little bit on the plane til Mark says, "We're here."


And it touched down at round 'bout quarter to eight, eight fifteen of their time; three o'clock in the morning our time.


And I seen this daybreak.


Anyway, after we got in to London, we had to get our luggage and then we had to stop and get some pounds, their money, because I had travelling checks. And it was kind of hard for me to 'dentify what money from American money. I axed Mark, "What does that mean?" He 'splained it to me. It was kind of hard to 'dentify what is pounds, because I had no schooling about different countries. Well, anyway, when we got into the. . .it wasn't an apartment; it was like a dorms.


They invited me to come to learn more about our side. The next day they had their national meeting. And I got to stand up in front of all the people with disable. And I got up there and said that, "Now listen -- you have to get together. If you want to form a international conference, we have to get it together. This is no Joking matter. We have to concentrate on things that we have to do." That starred 'em up, everybody. I don't know how, don't ax me how I did it, but I did it. Yep.


It was very interesting to see how they accent talk: they talk different than I talk. And it was very powerful things that they said. We talked about how to get a self-advocacy organization started. It was a very powerful thing.


And then we took a tour. Me and Mark went on a bus and Bill Worrell. We went to visit Buckingham Palace and we went to see the Changing of the Guards and we ate in the park for lunch and we had a good time there. Bill Worrell had his self-advocacy group there from Canada -- People First; it was a bunch of us.


It was a week; it went on for a whole week. We talked about some serious things up there. And it was very, very hard to imagine how that would work. Very hard to test that.


At Hershey Mark was saying, "You come down the hall. I has a surprise for you."


"A surprise? What kind of surprise? I don't like surprises." And he told me to put the key in the door.


I opened the door and here's this big living room and with a big bed and the bathroom and the TV in the living room. It looked like for a big shot. I was shocked. I'm only one person. It was for a person that is a big shot, that had a lot of children; or three people could sleep in there.


And I was just, "Me? No, you must be kidding." And he said, "Don't take this to your head."


There's a lot of people take things too serious to their head. But I don't take things seriously to my head.


It was very nice.


I think that was my end of my presidency. That's why they did that.




That's why they gave me that room. It was nothing put past me. I think that that's why that happened. Somebody set that up. Nobody told me. Everybody kept quiet.


It was a very, very good thing to do. It was very, very nice being in a suite at Hershey.


I had to say to myself, "Well, it's time to give other people a chance to be president. Because I can't be president all the time. . ."Giving them the chance to turn the gavel over to somebody else.


It kind of felt hurt inside, but it helped in the long run to give somebody else a chance.


It was very hard to give it up, very very hard to just say, "Well, I had it; I had enough of it" and give somebody else a chance in my shoes.


The board voted on whom will gonna be the next president. Debbie Robinson -- she'll do the job in my place.


It's true I felt pushed out. It's kind of hard to put that together. I have no easy answers.


Debbie took the pattern and she followed the pattern: she was president, as I was president, in the Philadelphia chapter. She followed my lead. She picked up whatever I taught her. She learned what all from me.


And I got voted to a 'xectuive to the Board -- making decisions for the Board.


And then I was elected back to president of Philadelphia.


They axed me to go to Pine Hill at that time to start a chapter in Pine Hill. -A small privately operated institution for people with multiple disabilities, developmental and physical -- K.W.- Bob Walsh -an advisor with Speaking For Ourselves -- K.W.- invited me to come out there.


I went out there and took a look at Pine Hill, and I told Bob that he could not start a chapter in an institution. I better not hear him starting a chapter in an institution.


I talked to them about coming to the chapters, instead of having a chapter in Pine Hill. I told 'em that would not be right to start a chapter in Pine Hill because that if you start one, the staff would run it; the members wouldn't run it; it would be staff running it. It wouldn't be as good as other chapters would be. I told that the members had to come to the chapters and not have a chapter in Pine Hill.

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I think that what would happen that it would not give the clients rights to do things for themself there. Because the staff would do it all for them, not the members themself. And that's been our policy in any chapter -- that no staff was allowed in there while they're having their chapter meeting going on. It's been like that ever since. Because the members didn't like them to sitting in listening to what they're saying. Because like I said earlier they might take it back and tell, "They said something about us" and they will get on them saying that, "Why did you do that?" and they'll get punished for it.


I presented myself as a president.


"I'm Roland Johnson and I'm president at the Philadelphia Chapter; I'm the one that runs the Philadelphia Chapter meeting once a month and I would like to talk to you about our chapter. We meet Monday night once a month at Osteopathic Hospital. We sit around and talk about things, like's on people's minds. Speaking For Ourselves is a help-solve-problems organization. People speaks out, speak up for themselves. And it's un-profit organization."


I coax them to make them understand that this is right to come out of the institution. I told them about my life, how I was in an institution, how I was beated up. I told 'em my life first and then I talked about some of Speaking For Ourselves stories that helped me to understand things. And I would say that this would be a outlet for people to get out and help themselves, talk with themselves, with anything that they have on their mind. I said that this is the way you would get out of institutions -- by coming to the chapters and showing yourself as a partner with Speaking For Ourselves. "We have to be united with one." I told them Speaking For Ourselves would make them feel self-fulfilled at the meetings that we have.


The thinking was behind that was to get people to be part of something that they believe; if they believe, really believed in, the people helping them, they have to be part of Speaking for Ourselves.


They listened to me and they all came. Bob started bringing people out to the Philadelphia Chapter. And then we would work with some people. Betty Brittingham wanted to get out of Pine Hill.


Big controversy over that -- it really went on for two years. That they would come back each month and said, "Somebody is being abused up at Pine Hill." And they did not like it. They was not getting the things that they wanted.


So we went up there and we took a sneak attack -- me and Debbie Robinson and Mark and Nancy and Judy Gran -Speaking For Ourselves' lawyer from PILCOP, Public Interest Law Center of Philadelphia -- K.W.-; we went to see for ourselves if this was really happening.


And it was.


I saw the little babies crying, little infant babies; they was not being cared for right and they was howling and nobody came over to their rescue and they probably want their milk bottle. And we seen -- actually I seen it with my own eyes -- a staff person hit this lady in the bed -- pinched her or something and she was crying. And Norm Baker -an advocate for people with disabilities -- K.W.- went in there and axed her what she was crying about. And it really shocked me. It really brought a lot of the attention to Pine Hill.


It smelled like Pennhurst; it 'mind me of Pennhurst -- the graffiti and the beds, just looked like Pennhurst. It was just a awful sight to see. How can anybody live in that kind of filth? I had tears when I came out of there. It was awful. And this is why we keep saying that we need to get people out of these institutions. Quick. They need to be out now. We need to keep people out of institutions; this is the things that we need to do. We have to face it. 'Fessionals have to face it. That these things are happening. And don't try to deny it. 'Cause it's happening in institutions.


I came out and I didn't like what I saw, so we went back to our chapter and we fussed about it. And then we got somebody to 'vestigate a little more and Judy Gran, our lawyer, 'vestigated and, of course, Norm Baker with his good seeing eye opened his mouth and called Steve -Eidelman -- K.W.- and worried Steve.


And Norm Baker said, "This is happening? It needs to stop. You need to come up here and look at it yourself."


So, that's what happened. I think he got his other people and went up there and looked at it. It went a year, one year, until we got people out of there and into a community and into other places. They got new people to come in and a new director.


Betty Brittingham got out; we helped her get out of Pine Hill and several other people up there. About half are still there. And we're still looking for more people leaving out of there.


And then they had big advocacy, but I did not take part of it: I couldn't get off, I was working out in Eastern College at St. David's. I wanted to be there, but I just couldn't find the time to be there.


I was elected president of the Board again, but I didn't want it no more, 'cause my body couldn't take it. The pressure was too much for me; president's role was too much. I was sick. I had colds, cold after cold, and 'monia. I just couldn't run the president any more. So I had to give it up.

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I didn't do much. I was on the national steering committee; they votes me as a national steering committee in Nashville, to help people where to go, how to set up the next meeting.


I resented President Bush with a plaque, a reward for the ADA.


I was interviewed on CNN.


I lecture with Nancy Nowell -- that was a job for CHC -Coordinated Health Care -- K.W.-


We got people out of Embreevile -- some of them, they're not all out. -A state institution which has now been closed -- K.W.-


I talk to case managers in county offices about how to handle people when people come out of institutions, not to treat them mean or bad, because they can get very violent and you don't want to put them back in the institution; I don't want to see them back in the institution. I told them living in an institution was a horriful place; people beat you up; it was horrible.


I kept on believing and praying and hoping that this book will be written for people's 'sideration, letting people know about my life story. I thought of it -- I said that this book might be written, if I can find someone to help me to write the book. I'm a person that believes that something is going to happen. And it will take place; it will. I had no doubts in my mind that it would not never happen. It will happen.


This book is a story about my life; it's about my whole life story from now to then.


-- The End --


Third International People First Conference, Toronto, June, 1993


-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?




You go to your people whenever you want?




You tell them what you want. But do they listen?




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.

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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."




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 for allowing me to come here and speak to you and for all this week. Thank you very much.

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