Chapter 6: Work with the Arc of Chester County, Advocating to End the Use of the 'R' Word
17:55:39:20 - 17:56:34:00
Lisa: 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?
Karen: Let me see. I have Wesley at the ARC. I do activities at the ARC and lots of self-determination; self-determination group.
Lisa: 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?
Karen: Self-advocate Action Team.
17:56:34:15 - 17:57:11:00
Lisa: What does that committee do?
Karen: 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
Lisa: So I want to be clear. Who are the people who don't understand some of the County's policies?
Karen: 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 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.
Lisa: So I want to ask you, who goes too fast?
Karen: The county. They go to county meetings too and this is where we get our information, from the county.
Lisa: And so you think the County doesn't always present information in a way that people with disabilities and families can understand?
Karen: 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
Lisa: 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...
Karen: 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.
Lisa: Why was it important?
Karen: 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.
Lisa: Do you know people who have been called the R word?
Karen: Oh yeah.
18:00:38:26 - 18:01:39:29
Karen: 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.
Lisa: How did that make you feel?
Karen: 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
Lisa: 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.
Karen: Four fifty what?
Lisa: Senate Bill 458.
Karen: 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
Lisa: So you said it takes the R word out of the system. What does that mean?
Karen: 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.
18:03:33:00 - 18:04:23:15
Lisa: 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.
Karen: 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
Lisa: How did you and your fellow self-advocates persuade Senator Dinniman to put that bill forward?
Karen: 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
Karen: 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
Lisa: How did you feel when that passed?
Karen: Good and bad because you had people who didn't want that.
18:05:33:00 - 18:07:25:13
Lisa: So as part of the self-advocate subcommittee what other issues do you and your peers advocate for?
Karen: 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.
Lisa: Kids with disabilities or all kids?
Karen: 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.
Lisa: Who does the luncheon recognize? Who gets the awards?
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
- YOU ARE HERE: 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