Chapter 5: Living in the Community
17:45:08:15 - 17:45:36:03
Lisa: 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?
Karen: 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
Lisa: Let me ask the question differently. When you left Camphill at Kimberton, where did you go next?
Karen: Bryan's house. I went to Bryan's House and lived there.
Lisa: Did you try before Bryan's House, did you try life sharing or anything?
Karen: No I did not.
Lisa: You did not, okay.
Karen: I stayed in Bryan's House. Actually they took me in.
Lisa: So what was Bryan's house?
Karen: 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
Karen: 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.
Lisa: What was her name?
17:46:38:25 - 17:46:45:24
Lisa: So Karen you said you had moved sort of, thus far you've lived in about five different houses?
Karen: I did.
17:46:46:05 - 17:47:00:20
Lisa: Was living with your own family ever something you wanted to do again? Was it ever a possibility?
Karen: 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
Lisa: 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?
Karen: 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.
17:47:27:10 - 17:47:31:24
Lisa: This is all the stuff your parents thought you couldn't do?
17:47:32:00 - 17:47:54:14
Lisa: So how did you learn? How did you learn to manage money, pay bills?
Karen: 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
Lisa: What are you good at?
Karen: 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
Lisa: How long did you live at Bryan's house, Karen?
Karen: 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
Lisa: So where are you now?
Lisa: Where do you live now?
Karen: Downingtown with a girl who has Down's syndrome.
Lisa: And how is that situation?
Karen: Fine, we're doing good together.
17:49:15:00 - 17:49:38:02
Lisa: 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?
Karen: 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
Lisa: Do you think it's changed your relationship with them?
Lisa: In what way?
Karen: 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
Lisa: Karen now that your parents see you living independently I'm wondering if that's changed your relationship with them?
Karen: 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.
Lisa: Why do you think that is?
Karen: 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
Lisa: What about your siblings? Now that they see all that you've accomplished has it changed your relationship with them?
Karen: 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
Lisa: Do you wish you had a deeper relationship with your siblings?
Karen: Sometimes I want a relationship. Sometimes I don't.
17:53:58:10 - 17:54:42:25
Lisa: So what do you like about living independently?
Karen: 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
Lisa: Are there hard parts about living independently?
Karen: No. I don't think. I like living independent.
Lisa: So how do you like to spend your free time? You talked about a couple things; library and buses.
Karen: 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 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.
More Interview Chapters
- Early Life
- Education/Living at St. Mary's School
- Living at Camphill at Kimberton, Early Self-Advocacy
- Self-Advocates Address Safety Issues, Institutions
- YOU ARE HERE: 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