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Lost In A Desert World

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

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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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