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Lost In A Desert World

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

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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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