Visionary Voices Interview: Karen Hayes September 27, 2013

CHAPTER ONE: EARLY LIFE

17:10:45:15 – 17:11:18:17

Q: My name is Lisa Sonneborn. I’m interviewing Karen Hayes at the Arc of Chester County on September 26, 20… September 27th, pardon me, 2013. Also present is videographer Paul Van Haute and Karen, do I have your permission to begin the interview? Thank you. First Karen, can you tell me your name and your current occupation?

A: My name is Karen Hayes and I’m not sure what you mean. What does that mean?

17:11:18:20 – 17:11:36:19

Q: What kind of work do you do?

A: I work at the mall. I clean tables and sweep the floors.

Q: Do you do any other kind of work?

A: I’m on the self-determination board of the ARC of Chester County.

17:11:36:25 – 17:12:17:18

Thank you. Karen, we’re going to start our interview by talking a little bit about your early childhood and your family, if that’s okay and firstly I’m wondering if you can tell me when and where you were born.

I was born in Lynchburg, Virginia and I have two brothers and one sister.

And what year were you born?

1954.

Thank you and did you grow up in Lynchburg?

I don’t remember that. I was too young. I don’t think I did. I think my parents traveled a lot because my dad was in the war.

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17:12:41:10 – 17:13:01:24

Q: Karen I’m wondering if you can tell me a little bit about your parents starting with your mom.

A: My mom, when she was young, she was a model. She liked to model and my dad was in the army.

Q: What are their names?

A: My mom’s name is Jacquelyn and my father’s name is Thomas.

17:13:05:20 – 17:13:20:17

Q: You said that your dad was in the army and a little bit earlier you said you moved around a little bit.

A: We did. We did move around a little bit because we were all born in different states so my father liked moved around a lot.

17:13:21:10 – 17:13:39:12

Q: When did you finally move to Pennsylvania?

A: I don’t remember that. I don’t remember any of my childhood so much. Who knows anything about their childhood; it’s very hard. You don’t really know, you know?

17:13:41:10 – 17:14:24:04

Q: Well one thing I’m sure you know about your childhood is whether or not you had siblings?

A: I know I had siblings because I grew up with them so I know that. I know I have brothers and sisters.

Q: Can you describe them for me? Maybe tell me their names and ages?

A: Kathy I think is in her mid-sixties, probably like 63/64. My brother is like maybe 56 maybe I think and my other brother is like maybe 68.

Q: So where do you fall in the birth order?

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A: I fall like in the middle because he’s the youngest boy in the family so.

17:14:24:10 - 17:15:43:21

Q: So Karen can you describe a little bit for me, about your relationship with your parents when you were a child?

A: I guess I was fine with them. Sometimes they went, you know like, I was the only child one with a disability so it was very hard because my sisters and my family didn’t really respond me as a disability because they never used to do any you know like they used to pay me no mind but now they're paying a lot more mind because my parents had a place in Kiowa, South Carolina when they were young cause they used to go down there and they never used to have me down there until when they moved to Naples and I started going down with them. I started going to Naples and being with them for the winter months, you know like during the summer, and December and stuff like that. They used to pay me no mind. They used to always like to go down south because they don’t like the winter. None of my family does.

Q: They're all snowbirds?

A: Yeah. Kathy… Tom doesn’t mind because he’s in Ashford, North Carolina but Kathy goes down there in the winter month but she’s doesn’t mind the winter too much but she likes to go down there too and just be with her.

17:15:46:10 – 17:16:04:12

Q: I know it’s hard to recall a lot of specific details about your early childhood because when you’re that young it’s a little hard to remember the specific details but when you look back would you describe your childhood as a happy one?

Q: Yeah. A happy one.

17:16:05:15 – 17:16:50:10

How would you describe yourself as a child? What kind of child were you?

I think I was a nervous child because like my parents, you know… I would always do something with my sisters but I’d get mad because they were driving me cuckoo. My brother used to be a big fat tease. That’s the way he was. My youngest brother always likes to tease me and always

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get me into trouble. If something happened he would say oh Karen did it. I would say no I didn’t, you did it. He used to tease me a lot. That was my youngest one. He loved to tease me.

17:16:51:25 – 17:16:58:07

Q: Do you have a favorite memory from your childhood?

A: Not really.

17:16:59:05 – 17:17:30:11

Q: Karen you had said you were the only person in your family who was born with a disability and I wondered if you could tell me how would you describe your disability? What is it? How does it affect your day to day life?

A: It doesn’t really affect me on a day to day life because I'm actually not… I get my numbers backwards. I’m not very good arithmetic person so that’s what my disability was but other than that I’m pretty smart.

17:17:33:10 – 17:17:55:06

Q: Was the disability that you describe apparent to your parents’ right away from the time you were born?

A: Probably because I actually thought, I used to get… you know how you used to go to like psychiatrist? I used to have to go to the psychiatrist when I was younger. I don’t know why my parents took me there.

17:17:56:10 – 17:18:09:15

Q: What did the psychiatrist tell your parents about how to best support you?

A: They told me I would never be able to do things for myself. I would never be able to live on my own and that kind of stuff and they were wrong.

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17:18:14:25 – 17:18:37:02

Q: So Karen when your parents heard that from psychiatrists when they said that you would not be able to live on your own how did they react? What did they do?

A: They were surprised. They gave me a lot of medication and stuff like that to try to make me not so nervous but I don’t remember that.

CHAPTER TWO: EDUCATION / LIVING AT ST. MARY’S SCHOOL17:18:37:15 – 17:19:03:25

Q: Did any of the professionals say to your parents that you should be sent to live someplace else?

A: They told me I should live in an institution. They told me I should be in like St. Mary’s or someplace like that, that I was such a slow learner.

What is St. Mary’s?

It’s a Catholic school but I didn’t like it. I hated it.

17:19:28:10 – 17:20:15:09

Q: You were saying that your parents tried to get some support for you by talking to some psychiatrists and I'm wondering what those doctors said to your parents about…

A: I don’t remember. I probably left the room. They took me out of there. I don’t remember. I was too young.

Q: But did they suggest to your parents that you should be sent elsewhere to live?

A. They thought maybe like Pennhurst because I was in the waiting list Pennhurst. I was in the waiting list to go to Pennhurst. I was on the waiting list to go to Pennhurst but I didn’t get there.

17:20:16:10 – 17:20:48:02

Q: Where did you go?

A: St. Mary’s instead.

Q: And tell me a little bit about the kind of place St. Mary’s was.

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A: St. Mary’s was actually run by nuns. They used be nasty to you. They weren’t very nice to you.

Q: Do you remember the day your parents took you to St. Mary’s?

A: Maybe. I think it was in 62.

17:20:49:00 – 17:21:23:11

Q: Do you remember how you felt the day they took you to St. Mary’s?

A: Disappointed. I didn’t really want to go so I thought it was probably for my own good. They said they went last year for a couple weeks but other than that she didn’t like that idea. I’m going to let you go home the first week you got there because a lot of kids go home. They went home on weekends like every other weekend or something like that. They didn’t let me go for the last two. I didn’t want to stay there. I didn’t like it.

17:21:28:00 – 17:21:45:20

Q: You said that you weren’t able to go home every week like some of the other folks.

A: Right, I wasn’t.

Q: Did people come to visit you?

A: I don’t know if they did or not. I don’t remember… I don’t remember very much. I wanted to get out of there. It’s all I wanted to do.

17:21:47:20 – 17:22:09:08

Q: Were you able to make friends while you were at St. Mary’s?

A: I made a lot of friends, yeah. There was a lot of nice girls there. They took them from ages to like from like two to maybe like seven or twelve. They were actually pretty young when I went there; pretty young. A lot of kids were pretty young.

17:22:11:20 – 17:22:31:20

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Q: You said that you were able to go home.

A: Yeah eventually.

Q: How often would you go home?

A: Maybe like every other… go home like every other weekend. Like on holidays and stuff like that and maybe on a weekend that wasn’t on a holiday they’d let you go home.

17:22:32:20 – 17:23:08:02

Q: Were you happy to be at home?

A: Yeah. I would always cry when I got home because I never see anybody. I didn’t like living there.

Q: How did you feel you were treated while you were living there?

A: Not very nice. They wouldn’t treat you very nice.

Q: Can you give me an example of that?

A: They would hit you.

Q: And why would they do that?

A: If you made a mistake they would hit you. I did get hit a couple times.

17:23:10:10 – 17:23:28:28

Q: You had mentioned, Karen, that you had been put on the waiting list for Pennhurst although you never lived there. Did you ever have occasion or a reason to visit Pennhurst?

A: I visited Pennhurst when I used to be in the Olympics; the Special Olympics. I didn’t like what I saw. I didn’t like them; the way they were treated.

17:23:29:10 – 17:23:41:00

Q: What did you see at Pennhurst?

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A: I saw people naked and there was never any toilet paper in the bathrooms and I didn’t like that. I didn’t like to see people treated like that.

17:23:43:10 – 17:24:07:13

Q: So how long did you stay at St. Mary’s?

A: Probably since I was like 25 and then I left. I used to be like off and on basis like on the summer I used to go home with my parents and stuff like that and then I’d come back. I used to work for the sisters.

17:24:07:15 – 17:24:32:04

Q: What kind of work did you do for the sisters?

A: Usually mostly cleaning up the dorms and stuff like that.

Q: Did you stay after you were 18; after you were done with school, did you continue to stay?

A: I stayed until I was 25. I graduated when I was 18 then I stayed on and helped them out a little bit.

17:24:34:04 – 17:24:50:03

Q: While you were helping out at St. Mary’s did you ever think about your future and what you wanted for the rest of your life?

A: I wanted to actually not live there. I wanted to live on my own. That’s what I wanted to do.

CHAPTER THREE: LIVING AT CAMPHILL AT KIMBERTON, EARLY SELF-ADVOCACY17:24:51:10 – 17:25:18:21

Q: So how were you able to do that? How were you able to leave St. Mary’s? What happened?

A: 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.

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17:25:20:10 – 17:25:39:23

Q: So tell me a little bit about Camphill at Kimberton? What kind of a community was it?

A: 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

Q: And was it a community that was diverse or was it a community just for people with disabilities?

A: 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.

Q: 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?

A: Yeah they did. They did.

17:26:49:00 – 17:27:18:04

Q: Karen, did your parents think that you were going to be able to live independently in the community?

A: 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

Q: 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.

A: Right.

Q: And I’m wondering if you could tell me the name of that group and a little bit about how it got started.

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A: 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

Q: And what was Speaking for Ourselves about? What did the organization want to do?

A: 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

Q: As a person with a disability did you think people were speaking for you a lot in your life?

A: 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.

Q: But Speaking for Ourselves tried to help people find their own voices?

A: Mmm. Yep.

17:29:31:10 – 17:30:42:15

Q: 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?

A: 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

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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

Q: 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?

A: 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?

Q: Carol Ann Ianuzzi?

A: 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

Q: 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?

A: 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

Q: Why didn’t they speak?

A: 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.

Q: How do you know what to say on behalf of someone who doesn’t communicate in a traditional way?

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A: 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

Q: 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?

A: 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

Q: So Karen, Speaking for Ourselves gave its members a safe place to tell their own story, to tell what was happening in their lives.

A: Right.

Q: What kind of stories would people tell?

A: 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

Q: Would people talk about abuse or problems they were having?

A: Probably a lot of problems and abuse. They probably told about a lot of abuse.

Q: And how would other members, particular the leaders of the organizations, react when they heard the stories?

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A: 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

Q: 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?

A: It’s hard. They don’t like to be treated the way that they were treated.

CHAPTER FOUR: SELF-ADVOCATES ADDRESS SAFETY ISSUES, INSTITUTIONS

17:36:22:15 – 17:36:46:02

Q: Did personal safety become an important issue for members?

A; 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.

Q: And did you get involved in trainings for members about teaching people how to be safe?

A: Hmm-Mm.

17:36:46:08 – 17:37:28:10

Q: And what would those trainings be like?

A: 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.

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17:37:46:10 – 17:38:52:18

Q: 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?

A: 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

Q: So some of the issues that were important for Speaking for Ourselves; you said transportation, you mentioned jobs…

A: Yeah, a lot of them don’t like living in… they didn’t like being in a sheltered workshop. They don’t like that.

Q: What was wrong with the sheltered workshop for folks?

A: 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

Q: And another issue that was important was a personal; safety issue?

A: Try to be safe.

Q: Yeah why was that important to you to try to help other members be safe?

A: 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.

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17:40:03:10 – 17:41:05:19

Q: I’m wondering if you remember one of the presidents of Speaking for Ourselves, a man named Roland Johnson.

A: Yes. Roland Johnson is very popular.

Q: 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.

A: 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

Q: Were you involved as well?

A: Hmm?

Q: Were you involved in the close the doors campaign as well?

A: 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

Q: So what was it like to try to persuade government officials, advocates, systems…

A: 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

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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

Q: 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?

A: 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.

Q: Why?

A: 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

Q: Do you have a favorite memory from your work at Speaking for Ourselves back in the early days?

A: Roland. He was a very great (?) leader.

Q: Tell me a little more about him. What was his.. what was he like?

A: 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.

Q: He used to say who’s in charge?

A: Yep he used to say that; who’s in charge? I’m in charge he says… you’re you know…

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17:44:23:10 – 17:45:06:18

Q: How did he change your life?

A: 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.

Q: It’s hard to say no to Roland.

A: It’s hard to say no to Roland, you're right.

CHAPTER FIVE: LIVING IN THE COMMUNITY

17:45:08:15 – 17:45:36:03

Q: So Karen you were talking a little bit about finding your own voice through Speaking for Ourselves and helping other people find their voices; what was your own home life like? Were you still at Camphill at Kimberton at that point?

A: No I don’t remember if I was. I don’t think I was. I think I might’ve lived in Bryce at the time. I don’t remember exactly where I was when I started Speaking for Ourselves.

17:45:37:05 – 17:46:28:20

Q: Let me ask the question differently. When you left Camphill at Kimberton, where did you go next?

A: Bryan’s house. I went to Bryan’s House and lived there.

Q: Did you try before Bryan’s House, did you try life sharing or anything?

A: No I did not.

Q: You did not, okay.

A: I stayed in Bryan’s House. Actually they took me in.

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Q: So what was Bryan’s house?

A: Bryan’s house was a place where they took you and fitted you with a roommate and stuff like that and live on your own. I lived with a girl

A: who actually passed away. She died when I lived with her down in Downingtown. So basically I’ve traveled all my lifetime to five different houses with her.

Q: What was her name?

A: Rosa

17:46:38:25 – 17:46:45:24

Q: So Karen you said you had moved sort of, thus far you’ve lived in about five different houses?

A: I did.

17:46:46:05 – 17:47:00:20

Q: Was living with your own family ever something you wanted to do again? Was it ever a possibility?

A: I still want to live with my father and my mom but that’s never going to happen. If something happens to her … I don’t know.

17:47:02:10 – 17:47:26:13

Q: So you were living in Bryan’s house, you had a roommate; how did that work living independently? Did you pay the rent and bills by yourself?

A: I helped pay the bills, I helped pay the rent, I did the cooking. She cooked too. We both did cooking. She didn’t pay the bills. She paid like the electric bill, the phone bill, the cable, you know that kind of stuff.

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17:47:27:10 – 17:47:31:24

Q: This is all the stuff your parents thought you couldn’t do?

A: Right.

17:47:32:00 – 17:47:54:14

Q: So how did you learn? How did you learn to manage money, pay bills?

A: Well I didn’t. She actually sent me helped me, helped me pay the bills, helped me balance my checkbook but I wasn’t very good at it. Like I said I'm not very good in, you know, in a checkbook.

17:47:57:00 - 17:48:17:04

Q: What are you good at?

A: I’m good at like maybe helping support other people, helping get people get their voice. Some are not good at it. I'm not very good but I can read a little bit but not very much.

17:48:19:05 – 17:48:56:22

Q: How long did you live at Bryan’s house, Karen?

A: A long time. I just moved like maybe about two years ago. I lived in Bryan’s house after I lived in that group home way back. They took me out of that group home because a lady used me, tell me to do everything you know like do all our clothes, stay up to midnight and try to go to work in the morning and I couldn’t make it. I lived at Bryan’s… I must’ve moved out of Bryan’s house over two years ago.

17:48:58:00 – 17:49:09:05

Q: So where are you now?

A: Huh?

Q: Where do you live now?

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A: Downingtown with a girl who has Down’s syndrome.

Q: And how is that situation?

A: Fine, we’re doing good together.

17:49:15:00 - 17:49:38:02

Q: So your parents didn’t think you'd be able to live independently. You are living independently. What do they think when they see all that you're accomplishing?

A: They have. They’ve seen a lot I've accomplished. They see that I have a job and stuff like that. you know they're proud of me as a person with a disability.

17:49:38:27 – 17:50:08:28

Q: Do you think it’s changed your relationship with them?

A: Yeah.

Q: In what way?

A: I think they're actually more close to me than they’ve ever been because my parents, they never send me down for Florida in the winter. When they moved to Naples they actually started having me down a lot, you know? You know for like Christmas and whatever so it was kind of hard for them but they got used to it.

17:52:27:20 – 17:53:05:10

Q: Karen now that your parents see you living independently I'm wondering if that’s changed your relationship with them?

A: I feel more close to them now because my dad is like 90 years old so he’s just getting up there in age. They're more close to me now than they’ve ever been.

Q: Why do you think that is?

A: I don’t know. I don’t know. They just feel that they wanted to have me in Florida which is nice.

17:53:07:10 – 17:53:46:28

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Q: What about your siblings? Now that they see all that you’ve accomplished has it changed your relationship with them?

A: I don’t see much of them. Me and my sister, she comes up here like when she comes up here she’ll take me out for lunch. She never used to do that and then she started doing that when my parents are in Florida. She comes up. She’ll do it. A couple times she took me out for lunch. I don’t really talk to my older brother. I talk to my friend Wesley. I can't talk to my brother very much because he’s always never home. He’s hard.

17:53:48:10 – 17:53:56:23

Q: Do you wish you had a deeper relationship with your siblings?

A: Sometimes I want a relationship. Sometimes I don’t.

17:53:58:10 – 17:54:42:25

Q: So what do you like about living independently?

A: They can be, well it can be like doing stuff for myself. I don’t need anybody telling me what to do. Staff don’t tell you what to do, you know what I mean? You can do your own thing and do whatever you want. If you want to take a walk you can do that yourself. If you want to go to the library you can go yourself. You don’t have to ask them to do it. I just like to do stuff for myself. If I want to go take the bus somewhere then I’ll take my bus somewhere. I don’t need their permission to do things like that. That’s why I like living on my own because I can do more stuff myself.

17:54:45:10 – 17:55:26:11

Q: Are there hard parts about living independently?

A: No. I don’t think. I like living independent.

Q: So how do you like to spend your free time? You talked about a couple things; library and buses.

A: Usually I will go maybe like take a walk somewhere or go like I’ll take the bus somewhere if I wanted to go but sometimes I don’t. Something I just go to my room and I just like to be myself

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because I have a TV in my bedroom so I just can go and watch TV if I want to by myself. I close the door. I listen to music when I'm by myself. That’s why I like to be independent.

CHAPTER SIX: WORK WITH THE ARC OF CHESTER COUNTY, ADVOCATING TO END THE USE OF THE ‘R’ WORD

17:55:39:20 – 17:56:34:00

Q: So Karen, I wanted to ask you a little bit about your work with the ARC of Chester County. I know you're very involved and I wondered if you could tell me a little bit about your involvement with the ARC. How do you support what the ARC does?

A: Let me see. I have Wesley at the ARC. I do activities at the ARC and lots of self-determination; self-determination group.

Q: That group has such a long name. I’m going to say it and tell me if I have it right or maybe you can tell me. Is it the Chester County Self-Determination Action Team Self Advocate Sub Committee?

A: Yeah.

Q: Wow.

A: Self-advocate Action Team.

17:56:34:15 – 17:57:11:00

Q: What does that committee do?

A: Well that’s a committee who actually goes to the other meetings like the big ones and then when we don’t understand the staff helps us in the meetings. Sorry… they actually, they help us understand more about what the County says because a lot of them can't understand what the County says because they talk about issues like what the states does and stuff like that. They don’t understand half of it.

17:57:11:10 – 17:58:41:00

Q: So I want to be clear. Who are the people who don’t understand some of the County’s policies?

A: Like a lot of the self-determination self-committee like Joyce Bobbitt and Matthew. A lot of them are in the committee. They don’t understand a lot of policies. So we try to gp back to our

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meetings and we talk about the staff right then. If they need us to talk about something then they’ll find somewhere better because they go too fast. They talk about the money issue, they do all that kind of stuff, you know what I mean? How much is in the budget; it’s kind of hard.

Q: So I want to ask you, who goes too fast?

A: The county. They go to county meetings too and this is where we get our information, from the county.

Q: And so you think the County doesn’t always present information in a way that people with disabilities and families can understand?

A: Right, that’s why we have these meetings and if they want us to talk about say like let’s say like taking away the R word which we told them we wanted to do that so that’s what we did. If we wanted to have something then we go back and we say to them oh we want a pancake breakfast or something like that or whatever, we try and deal with whatever they have us say. We try and go back.

17:58:41:05 – 17:59:52:00

Q: Well you mentioned something I’d like to ask you about which was the R word. I know that the subcommittee led a campaign to…

A: Right. First we started in with Vincent. Vincent Gressa. He wanted to get rid of the R word so he brought it to our attention. In the meeting and the conversation we went to and he said he wanted to get rid of the R word and they disagreed with him and he said we’re doing that campaign like we were asking people to sign saying get rid of the R word and we took it back to - and it was all going over the United States.

Q: Why was it important?

A: Because people don’t want to be called what they are being called. They didn’t like to be called retarded. They didn’t think that was - because some of them were not and they didn’t like to be called that word. They don’t like people to come up to them and say oh you're retarded, you know I mean? They don’t like that kind of stuff. That’s one of the reasons why the R word, they thought it was going too far. That’s what they did. They got rid of the R word.

Q: Do you know people who have been called the R word?

A: Oh yeah.

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18:00:38:26 – 18:01:39:29

A: A lot of them have. A lot of them have been called that. We tell self-determination we don’t like that word. A lot of them are called the R word and sometimes I've been called the R word.

Q: How did that make you feel?

A: I say I'm not retarded. Everywhere I go, even like… kids call me that name. Where did they come up with it? It’s not a bullying word they can say. You're retarded, you know? They all say that. Imagine your kid pops up and says is he retarded? He probably would one day have they been nasty to him or anything like that saying, you know, kids don’t know what to say but you know kids do say that. I don’t think you have to have a handicap or disability just to be… not everybody is the same way.

18:01:43:25 - 18:02:31:22

Q: So Karen, the campaign that you and the subcommittee sponsored here, the Chester County Arc, inspired one of Pennsylvania’s Senators Andrew Dinnerman to introduce Senate Bill 458. What was that bill? Tell me what that was.

A: Four fifty what?

Q: Senate Bill 458.

A: I think that could have been the R word. That was the R word that he took out of the system and we did go over to his office and definitely said are you going to get rid of the R word so he said he was going to do that and so he took pictures and everything. We had pictures with the board of him like on we’re on his board. I think a couple people actually were in that.

18:02:32:15 – 18:03:04:13

Q: So you said it takes the R word out of the system. What does that mean?

A: They took it out of… they are no longer using it. They're using another word. They're trying to keep the R word out but they're trying to make it like, another saying… trying to make, you know. When they can't one day. When they announce their selves at the board they say IDD which means that’s what they announce their selves.

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18:03:33:00 – 18:04:23:15

Q: So Karen, your campaign, the campaign of the subcommittee, of the self-advocate subcommittee of Chester County came to the attention of Senator Andrew Dinniman who introduced Senate Bill 458 which asks our state government to stop using the R word.

A: Right that’s what it was and what happened. The R word is no longer in the system and I think it’s no longer in the upper level either with people throughout the states. I don’t think they're using it anymore. You have to get them to sign that, the governor, to make them stop the R word and I think that’s what they did. I think it’s already been passed everywhere. I don’t think nobody uses it.

18:04:38:10 – 18:04:55:00

Q: How did you and your fellow self-advocates persuade Senator Dinniman to put that bill forward?

A: Well actually we used to have petitions and we used to go around and we went to Andrew Dinniman and we said-- we asked him to sign it.

18:05:05:05 – 18:05:24:01

A: We asked him. We wanted to get a petition and we were telling everybody to sign it to get off the R word. And then we told people to do that so that’s how we did it. That’s how we got rid of the R word because we actually got people to sign petitions and how many petitions we had and that’s what Andrew Dinniman did.

18:05:24:20 – 18:05:29:01

Q: How did you feel when that passed?

A: Good and bad because you had people who didn’t want that.

18:05:33:00 – 18:07:25:13

Q: So as part of the self-advocate subcommittee what other issues do you and your peers advocate for?

A: We’re also trying to get bullying, you know people bullying people. That’s what we’re also trying to get rid of now, people bullying into like, um, in classrooms. People bullying kids.

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Q: Kids with disabilities or all kids?

A: All, people are bullying people. You always hear in Philadelphia when they bully people and we’re to get rid of it. We’re trying to stop that too. That’s all over the United States is people bullying people even here on TV. So we’re trying to get that. We’re trying to… we’re also trying to do stuff like, do things like maybe wash cars or trying to get like… we’re trying to raise money for the ARC too. We’re trying to raise money. We haven’t started that. We’re talking about that but who knows if we’re going to end up doing that. We want to go to conferences. We try to go to conferences when they have them. We talk about those. We also talk about maybe like the Awards Luncheon that’s coming up in November or something like that. We’re trying to raise money. That’s like the pancake breakfast tomorrow so they're raising money for that to get enough money to have the lunch.

Q: Who does the luncheon recognize? Who gets the awards?

A: Disabilities.

CHAPTER SEVEN: WAITING LIST18:07:27:00 – 18:08:21:27

Q: You talked about the subcommittee, the self-advocates subcommittee, as helping other people with disabilities and families understand policy; breaking it down, making it easier to understand.

A: Right.

Q: I’m wondering what the subcommittee thinks about the waiting list and what affect the waiting list is having?

A: We definitely ask them too. We definitely like, we definitely ask the legislators to stop the waiting list. We’ve been doing that too. We don’t think, you know like I said, we’re trying to do that too. We’re trying to stop the waiting list but it’s not happening.

Q: Why?

A: Because we don’t have the money to do it. We should but they don’t want to do it. I don’t think people belong in the institutions but they didn’t have any place to put them. That’s what we’re trying to do, we’re trying to stop that too.

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18:08:22:00 – 18:08:41:16

Q: So what happens to the people on the waiting list?

A: They don’t get the services they need. I think there is even a waiting list for the ARC; for people services. They need services and they're not getting them because people don’t have money and money is a big issue everywhere.

18:08:43:05 – 18:08:51:13

Q: So if people need services and they can't get them, what happens?

A: I don’t know. That I don’t know. That I couldn’t answer.

18:08:52:15 – 18:09:37:05

Q: So because there’s a waiting list, because there’s shortages of money, does that ever cause you concern about your own future and your ability to live independently?

A: I don’t think so. I think it’s not really affecting some people but it’s affecting some. Since I have waiver it’s easier for me but some people don’t have waiver. So a lot of people don’t have waiver and every time you go to the ARC you have to pay for something now because the waivers not paying for it and the County is not paying for it. So basically you’ve got to pay for your own activities. You’ve got to pay private. So now the ARC has gone private everywhere. Everybody has to pay private when they go there.

18:09:57:05 – 18:11:20:20

Q: So is the subcommittee, is the ARC concerned even, that without money people with disabilities might be forced to return to institutional living?

A: We’re hoping that’s not going to happen. We’re trying to not let that happen because I said to the legislators if you don’t have the money, are you going to throw people back in the institution? And they said no that’s not going to happen and it better not happen because I'm going to fight it. As a self-advocate and as a self-determination we will fight it. We don’t want to see people back in institutions but it has happened in a couple places; that people are back in institutions because families can't support their kids especially lot of handicapped disabilities. I mean there’s a lot of different ones out there. There is people with physical disabilities that

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can't do anything for themselves. That’s the hard part. That’s where they're going; institutions and I don’t think that should happen. We’re trying to fight it. We’re definitely trying to fight people. We’re trying to fight our legislators. We’re trying to tell them not to stick anyone in institutions and try to get everybody out but there’s a few open. There’s nobody at Chester County that is actually in an institution right now. It’s all statewide. I don’t think we have any.

CHPATER EIGHT: REFLECTIONS ON LIFE, WORK

18:11:24:05 – 18:11:49:23

Q: Karen I'm going to ask a few last questions, sort of questions that ask you to reflect a little bit on your life.

A: Okay.

Q: Okay. Firstly are you still a member of Speaking for Ourselves, the organization you helped to found?

A: Sort of. Not exactly. I really haven’t been going to much activity. I haven’t been going much to Speaking for Ourselves because it’s very hard to get there.

18:12:21:10 – 18:13:07:18

A: I’m still involved but I just don’t go as much but they do keep me in touch.

Q: How’s the organization changed since it was founded?

A: Well I think it’s hard because actually there’s no funding to support Speaking for Ourselves anymore. I think Debbie is having a hard time. Now she's used to be where she used to be at and now she's near somewhere else. And that’s a problem. And now she’s in Philadelphia isn’t she? They’ve gone back and forth. I don’t think they have board meetings up in Harrisburg anymore like they used to. I think it’s very hard. They're not… there’s no funding.

18:13:09:15 – 18:13:41:03

Q: I also wonder about young self-advocates. Do you think the sort of up and coming generation of self-advocates is willing to continue the fight that you and your fellow self-advocates started?

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A: I think they're trying to. I think it’s hard. They want to do stuff but they just don’t have the money to do it. They try and make money by doing stuff, you know. There are a lot of self-advocates like Camphill (inaudible) are always the ones that more in Speaking for Ourselves now.

18:14:02:10 – 18:14:35:23

Q: What issues do you think are important to young self-advocates today or what issues should be important to them?

A: Their voice. I think a lot of them need their voice. I think people want to speak out more. I don’t know if they're doing it but they're trying. I think a lot of kids want to do stuff and they're like they take public transportation is a very big issue like I said and there’s no busses out there. Chester County is one of the worst for that.

18:14:39:05 – 18:15:09:26

Q: So Karen, you’ve had a pretty long personal journey from being a young child at St. Mary’s to where you are today. How would you describe yourself now?

A: Good. I've come a long way. I've come a long way since my childhood. My parents are really proud. They say you're doing an excellent job, keep up the good work. That’s what they tell me. They tell me.

18:15:11:05 – 18:15:35:16

Q: Has your life been different from what you might have imagined?

A: A lot. A lot.

Q; How so?

A: I feel more relaxed than I've ever been. I can do... I have a job and try to support myself which I am. A lot.

18:15:40:10 – 18:16:10:09

Q: What do you think it means to be a self-advocate?

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A: What does it mean? Self-advocate means to be I would say to support yourself as much as you can. I would think a self-advocate means. Self-advocates can do [anything]. That’s what I think a self-advocate means. I don’t know.

18:16:11:10 – 18:16:23:09

Q: When did you first feel like a self-advocate?

A: When I got to do stuff for myself, being more concerned in what my actions are.

18:16:26:15 – 18:17:38:04

Q: So who inspires you in this movement; this intellectual disability movement?

A: Who inspires me? I would say more your case managers because they say to speak up for yourselves. I think the case managers do a lot because they tell you to speak up for yourself for what you believe in as a self-advocate and people shouldn’t tell you what to do. Like I said my parents always told me what to do. My mom’s like that but I like to be… I don’t like people telling me what to do, you know? I don’t like people telling me how to do things but sometimes they have to. That’s how I feel self-advocates should learn because they don’t want people to tell them what to do and that’s what they do. That’s why it’s more to be independent and learn to do stuff yourself because kids want to do that. They don’t want to be like.. I think that’s what it means.

18:17:38:10 – 18:18:05:01

Q: What are you proudest of in your life?

A: Hmm?

Q: What in your life are you proudest of?

A: Proudest of, what does that mean?

Q: What makes you feel best about what you’ve accomplished?

A: I think I've come a long way in my life. I want people to be proud of me you know? I want people to be like okay this is what she’s accomplished and it’s what she should accomplish.

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18:18:09:05 – 18:18:57:06

Q: Is there a person who is the most important person in your life right now?

A: I think the Arc is. They’re more in my life right now so if anything happens to my family then I can always have a place to be, you know what I mean? So like they support me now you know what I mean? They support me in my life so basically you’ve got to have a place to live if something ever happened to your parents which my parents won't always be alive because they're getting up there in age. I think the ARC is important in my life right now.

18:18:58:00 – 18:19:21:16

Q: What was the happiest moment of your life, do you think, so far? When have you been happiest?

A: I've been happy. I’ve had my moments when I've been sad but other than that I'm happy now. That I can … I’m happy right now, you know? I have friends that are around me.

18:19:25:00 – 18:19:39:13

Q: What are some of the most important lessons you’ve learned in your life?

A: Learn to speak up for yourself. That’s what I learned in my life.

18:19:42:20 – 18:19:50:10

Q: Do you have any regrets?

A: No. I’m easy going. I like to be, like I said.

18:19:53:00 – 18:20:28:03

Q: Are there any words of wisdom that you would pass on to younger self-advocates?

A: I think people should learn to know what people are doing for them. I think Arc is actually a good program, I’d recommend it. I recommend it right now to younger self-advocates. It’s nice

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to have. They teach you cooking and all that and I think you should learn that. I know how to cook because I used to at Camphill.

18:20:30:10 – 18:20:37:28

Q: So Karen those are all the questions that I had for you today but I wonder if there’s anything that you want to add?

A: No, I don’t.

Q: Okay. Thank you for talking to us.

A: You're welcome.

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