Chapter 8: Reflections on Life, Work
18:11:24:05 - 18:11:49:23
Lisa: Karen I'm going to ask a few last questions, sort of questions that ask you to reflect a little bit on your life.
Lisa: Okay. Firstly are you still a member of Speaking for Ourselves, the organization you helped to found?
Karen: 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
Karen: I'm still involved but I just don't go as much but they do keep me in touch.
Lisa: How's the organization changed since it was founded?
Karen: 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
Lisa: 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?
Karen: 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
Lisa: What issues do you think are important to young self-advocates today or what issues should be important to them?
Karen: 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
Lisa: 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?
Karen: 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
Lisa: Has your life been different from what you might have imagined?
Karen: A lot. A lot.
Lisa; How so?
Karen: 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
Lisa: What do you think it means to be a self-advocate?
Karen: 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
Lisa: When did you first feel like a self-advocate?
Karen: When I got to do stuff for myself, being more concerned in what my actions are.
18:16:26:15 - 18:17:38:04
Lisa: So who inspires you in this movement; this intellectual disability movement?
Karen: 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
Lisa: What are you proudest of in your life?
Lisa: What in your life are you proudest of?
Karen: Proudest of, what does that mean?
Lisa: What makes you feel best about what you've accomplished?
Karen: 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.
18:18:09:05 - 18:18:57:06
Lisa: Is there a person who is the most important person in your life right now?
Karen: 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
Lisa: What was the happiest moment of your life, do you think, so far? When have you been happiest?
Karen: 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
Lisa: What are some of the most important lessons you've learned in your life?
Karen: Learn to speak up for yourself. That's what I learned in my life.
18:19:42:20 - 18:19:50:10
Lisa: Do you have any regrets?
Karen: No. I'm easy going. I like to be, like I said.
18:19:53:00 - 18:20:28:03
Lisa: Are there any words of wisdom that you would pass on to younger self-advocates?
Karen: 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 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
Lisa: 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?
Karen: No, I don't.
Lisa: Okay. Thank you for talking to us.
Karen: You're welcome.
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
- Living in the Community
- Work with the Arc of Chester County, Advocating to End the Use of the 'R' Word
- Waiting List
- YOU ARE HERE: 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