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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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