Chapter 4: Self-Advocates Address Safety Issues, Institutions
17:36:22:15 - 17:36:46:02
Lisa: Did personal safety become an important issue for members?
Karen: Hmm-Mmm. Try to be safe. People try and do something to you, don't tell them. You tell the staff that people are like hurting you or something.
Lisa: And did you get involved in trainings for members about teaching people how to be safe?
17:36:46:08 - 17:37:28:10
Lisa: And what would those trainings be like?
Karen: Well if you ever got abused then there was an abuse program. Nancy Nowell, do you know her? She had an abuse program. We used to go to her you know and we used to have a program where we'd talk about people who were abused because as a child I was abused. People take advantage of you. I've had that problem when I was younger and I actually told Nancy and then we started this group and we used to go out and talk about that to people with handicap disabilities.
17:37:46:10 - 17:38:52:18
Lisa: Karen you were talking about personal safety and that was an important issue for lots of the members of Speaking for Ourselves. Can you tell me a little bit about how you, as one of Speaking for Ourselves leaders, help people address those issues? Did you do workshops or trainings?
Karen: We used to do like conferences for people, teach them how to maybe like teach them... we started a conference on jobs and transportation was always a big issue for people because people couldn't get anywhere. That was a main issue for people with disabilities. They didn't like going - They wanted to go somewhere and they couldn't go anywhere. That was what their main issue was about. People don't want to work in a workshop. They want to be on their own. They wanna learn to do stuff their selves. And people don't like doing that.
17:38:58:00 - 17:39:34:12
Lisa: So some of the issues that were important for Speaking for Ourselves; you said transportation, you mentioned jobs...
Karen: Yeah, a lot of them don't like living in... they didn't like being in a sheltered workshop. They don't like that.
Lisa: What was wrong with the sheltered workshop for folks?
Karen: They wanted to like go and get their own jobs like have people help them get a job. They like to be out in the community and do jobs their selves. That's what they liked about it.
17:39:36:15 - 17:40:00:02
Lisa: And another issue that was important was a personal; safety issue?
Karen: Try to be safe.
Lisa: Yeah why was that important to you to try to help other members be safe?
Karen: I just felt I wanted to help other people besides myself. It's like I wanted to do that. I felt I wanted to have people have a voice. I wanted people to have a voice.
17:40:03:10 - 17:41:05:19
Lisa: I'm wondering if you remember one of the presidents of Speaking for Ourselves, a man named Roland Johnson.
Karen: Yes. Roland Johnson is very popular.
Lisa: I know that Roland was very determined to close institutions as were many members of Speaking for Ourselves. Speaking for Ourselves, under Roland's direction, started its close the doors campaign.
Karen: Yeah. They wanted to stop them and that's what I started doing, I started helping him a lot more. He really wanted to close institutions because he was in Pennhurst himself and he didn't like living in Pennhurst. There's a book out there called Desert Storm, have you seen it? I don't have the book right now but he didn't like living in institutions. He didn't like the way people were treated and I think he really wanted... that was one of his (inaudible) voice before that, I remember him saying that he wanted to, you know, he was very, very involved.
17:41:06:00 - 17:41:43:20
Lisa: Were you involved as well?
Lisa: Were you involved in the close the doors campaign as well?
Karen: Yes because I actually was on... when Mark used to have a lot of board meetings I was always on the board for Mark. I was actually on the board when Roland Johnson was on the board. I was on there with Steve Dorsey, Debbie Robinson and all those guys. I use to travel away to camp. I used to travel like to the meeting (inaudible) meeting. I had a job there all the time. So I was on the board and I knew what they were talking about.
17:41:45:15 - 17:42:28:05
Lisa: So what was it like to try to persuade government officials, advocates, systems...
Karen: It was hard because they won't listen to us and still they don't listen to us. They don't listen to us. We could tell them that, we can tell personally like you know like the director, whatever you call them... the legislators they won't listen to you. They still don't. You know they just don't - I think advocates should have what they want and they'll give it to them. It's very much what our issues were. That's what our issues were.
17:42:30:20 - 17:43:22:04
Lisa: So you and a lot of the folks that you mentioned, Roland, Debbie, Steve Dorsey, Luanne Carter, so many folks at Speaking for Ourselves worked really hard on some of the big issues. Was it all hard work? Were you able to have any fun?
Karen: Yeah we were. We did conferences together. You know we did a lot of conferences together. They used to be everywhere; the Sheraton, somewhere in Philadelphia. They were all over. You know people like coming to conferences and doing stuff like that.
Karen: They like seeing all their friends. A lot of people met. You meet a lot of new people, you know? That's what Speaking for Ourselves was. You got to meet new people. That's what they like doing.
17:43:23:05 - 17:44:21:17
Lisa: Do you have a favorite memory from your work at Speaking for Ourselves back in the early days?
Karen: Roland. He was a very great (?) leader.
Lisa: Tell me a little more about him. What was his.. what was he like?
Karen: He would always tell you that you have a right to speak up for yourself. You have a right to do what you want to do. He would always tell you don't ever quit, just speak for yourselves. You have a right to speak for yourselves. And that's what he liked doing. He always told us that. You know, stop fooling around and speak for yourself. That's what he used to tell us. It was very hard when he died because he used to ... he used to go campaign a lot. He used to go to Washington. He used to go to all those places you know. That's what he liked doing.
Lisa: He used to say who's in charge?
Karen: Yep he used to say that; who's in charge? I'm in charge he says... you're you know...
17:44:23:10 - 17:45:06:18
Lisa: How did he change your life?
Karen: He told me to always speak for myself and don't let people speak for you. And I always told him I wasn't gonna do it. I told him I quit for a while and then came back. He says no you're not quitting Karen. I said yes I am. I was just getting - just getting bored you know after a while but I came back and started over again. He told me no you're not stopping, you're going to keep on going. You know I quit for a year and then I came back. I promised him after he died I said I'd help him out. I said I'd still be there for him. It's hard.
Lisa: It's hard to say no to Roland.
Karen: It's hard to say no to Roland, you're right.
More Interview Chapters
- Early Life
- Education/Living at St. Mary's School
- Living at Camphill at Kimberton, Early Self-Advocacy
- YOU ARE HERE: Self-Advocates Address Safety Issues, Institutions
- Living in the Community
- Work with the Arc of Chester County, Advocating to End the Use of the 'R' Word
- Waiting List
- Reflections on Life, Work
About Karen Hayes
Self-advocate, Self-determination Board Member, Arc of Chester County
ARC, Chester County, Institutions, Pennhurst, "R" word campaign, Self-advocacy, Speaking For Ourselves