Chapter 3: Living at Camphill at Kimberton, Early Self-Advocacy
17:24:51:10 - 17:25:18:21
Lisa: So how were you able to do that? How were you able to leave St. Mary's? What happened?
Karen: I started living in Camphill in Kimberton for a while. I used to go there when I was real young like 18. I used to go there a couple times. I didn't stay at St. Mary's all the time but I stayed at Camp Hill for a while on just a trial basis. See what it was like to live in a community.
17:25:20:10 - 17:25:39:23
Lisa: So tell me a little bit about Camphill at Kimberton? What kind of a community was it?
Karen: It was like a place where you would do gardening, landscaping, and stuff like that, cooking, cleaning the house and stuff like that.
17:25:41:15 - 17:26:03:10
Lisa: And was it a community that was diverse or was it a community just for people with disabilities?
Karen: I think that it was just disabilities. I don't know if they were all with disabilities. It could have been a few of them.
Lisa: And how did you come to leave St. Mary's and go to Camphill at Kimberton? Did your parents help you to make that move?
Karen: Yeah they did. They did.
17:26:49:00 - 17:27:18:04
Lisa: Karen, did your parents think that you were going to be able to live independently in the community?
Karen: No. I fooled them. As I got older I fooled them. They didn't think I could do this. They're surprised on what I can do now compared to what I could do when I was younger. Didn't think I could live in the community and stuff like that, they didn't think I could do that. I showed them.
17:27:19:25 - 17:28:17:03
Lisa: While you were living at Camphill at Kimberton, I think in the early eighties maybe around 1982, I know that you met a case manager from Westchester named Mark Freedman and Mark wanted to form a group for people with disabilities.
Lisa: And I'm wondering if you could tell me the name of that group and a little bit about how it got started.
Karen: Speaking for Ourselves. (inaudible) in Westchester and my case manager, Mark was actually director of... like Virginia now she used to be director of case manager and he asked me if I wanted to start this group, Speaking for Ourselves, so I said sure I'll start it with you and I started it with him and I was like one of the first people actually to be the president and stuff like that; like I used to run the meetings.
17:28:19:00 - 17:28:34:29
Lisa: And what was Speaking for Ourselves about? What did the organization want to do?
Karen: They wanted to help people get out of institutions and help people to find where their voices were. They wanted to help people speak for themselves; not always people speak for them.
17:28:38:25 - 17:29:30:14
Lisa: As a person with a disability did you think people were speaking for you a lot in your life?
Karen: My parents didn't let speak for myself. They still do. They still think they can run my life for me but they can't because that's why they say that now self-determination, speak for yourself not let your parents speak for you but my parents still need to speak for me. They still tell me what to do. They (inaudible) tell you what to do. That's what they do. They love to tell you what to do. They constantly tell you what to do. She tells me how to do stuff, she tells me this and that so you know.
Lisa: But Speaking for Ourselves tried to help people find their own voices?
Karen: Mmm. Yep.
17:29:31:10 - 17:30:42:15
Lisa: You were one of the early founders of the group; you and Mark. Can you tell me about some of the other folks who helped to form the group?
Karen: We tried to get people like... we tried to find people in a community. I don't know how they actually started getting a lot of people but maybe a lot of them heard about Speaking for Ourselves and started wanting to come and stuff like that. So a lot of them are maybe like parents that actually maybe had disability and they were actually given a voice to speak and whatever we said in the meetings were allowed to be just for them not... they couldn't go back and they couldn't say anything we had said because we thought they'd tell something and we didn't want them to repeat it. You know like so it's like something like what happened in institutions or whatever you know and stuff like that because a lot of them are out but... they didn't like being in there either so group homes and stuff like that used to come to meetings. They said they don't like the group home, they don't like to be like this so we never used to tell them. You know if we know what you're gonna say we don't do it. You know we don't we don't repeat them. Whatever we say in this meeting stays here.
17:30:44:10 - 17:31:21:20
Lisa: Who were some of the early leaders of the group that you worked with? You were a leader, you were an early president. Who were some of the other folks that you worked with at Speaking for Ourselves?
Karen: Bill Collins, Pamela Barnes (?), Danny Cole, Luanne Carter I think was one of them. There was like a whole bunch of them. I don't remember all of them. Jerome Ianuzzi. The other one that you know - who was it? Jerome Ianuzzi's wife?
Lisa: Carol Ann Ianuzzi?
Karen: Yeah she was one of them. She was one of the people too. She did a lot of that too.
17:31:52:06 - 17:32:19:12
Lisa: Can you tell me about some of those early leaders at Speaking for Ourselves who you worked with and who might've influenced you and inspired your work?
Karen: I thought that Speaking for Ourselves was a good thing for people with disabilities. You know there's a lot of people that won't speak you know we always have a voice for them. There was a couple of them that did not speak.
17:32:20:15 - 17:32:56:16
Lisa: Why didn't they speak?
Karen: They don't know how to talk so... there's a lot of people out there who don't talk so we have to be their voices for them.
Lisa: How do you know what to say on behalf of someone who doesn't communicate in a traditional way?
Karen: I don't know how they actually done it but I think they try and tell you. You know how their expressions are... I would say by their expressions, how they interact.
17:32:57:20 - 17:33:57:05
Lisa: So you were saying that people from group homes would often come to Speaking for Ourselves meetings and that Speaking for Ourselves gave them the opportunity to tell their stories or share things sometimes for the first time, certainly in a private place where the stories wouldn't get back to anyone else. So I'm wondering what kind of stories people told knowing that they were maybe for their first time in a safe place to tell those stories?
Karen: They used to tell them like that the staff weren't nice to them or something like that. You know what I mean? There's a lot of... they're telling us. They said I don't like living there. I don't think people like to be around so many people. They don't feel comfortable. In any group home you have like four or five people; people like that. I think just like me, one or two for instance but they put a lot of people in group homes. You know? Its what they do.
17:34:44:25 - 17:35:13:21
Lisa: So Karen, Speaking for Ourselves gave its members a safe place to tell their own story, to tell what was happening in their lives.
Lisa: What kind of stories would people tell?
Karen: I really don't remember. I couldn't tell you it's been so long, I don't remember. I don't remember you know a lot of things people used to tell but they used to tell their stories. I don't remember exactly.
17:35:14:15 - 17:35:53:20
Lisa: Would people talk about abuse or problems they were having?
Karen: Probably a lot of problems and abuse. They probably told about a lot of abuse.
Lisa: And how would other members, particular the leaders of the organizations, react when they heard the stories?
Karen: They would tell them that you know... we would tell them to try and - we just tried and help them a little bit trying to say... just like... just do the things they tell you to do or whatever people like be nasty to you don't hit them back. We used to tell them.
17:35:58:20 - 17:36:16:19
Lisa: Was it hard for you to hear the stories of people who were living in institutions or in group homes where they were experiencing abuse and mistreatment?
Karen: It's hard. They don't like to be treated the way that they were treated.
More Interview Chapters
- Early Life
- Education/Living at St. Mary's School
- YOU ARE HERE: Living at Camphill at Kimberton, Early Self-Advocacy
- 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