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.
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?
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 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.
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 SCHOOL
17:18:37:15 – 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.
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
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?
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-ADVOCACY
17:24:51:10 – 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.
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.
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 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?