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Lost In A Desert World

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

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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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