Chapter Eight: Dee Reflects on Life and Work

08:17:09:19 - 08:18:19:17 Lisa: How would you describe yourself?

Dee: Well, I guess I'm full of passion and energy, and a desire to make a difference, but to help. I'm sure by some I'm seen as controversial, and someone who likes to confront, I guess is the best way to put it, but I'm certainly quite different than who I really am, but certainly this is what I have become, and it's hard to put a stop to me, because I feel so -- I feel so wedded to what we do, and I feel that it has made a difference for many people's lives, and that it's been important, and I thank god that I've been given the opportunity to do it.

08:18:21:00 - 08:21:27:02 Lisa: When did you first feel like an advocate?

Dee: Well, it certainly was -- I guess the first time I felt like an advocate is when I had to advocate for Gina. But there was an incident that happened, if you talk about feeling like you're an advocate and you actually got the result, there was a time when I was very concerned about some things that were happening at the school that she was going at, and I decided -- and I don't know why, because I was like a young mom. I really didn't have any knowledge about how to do something like this, but I happened to just have a letter with all the board members' names on it, and at the time, one name that stuck out to me was Milton Schapp, who was on the board. He was running for governor. So I just decided, having not had much success with the executive director of the agency that Gina was at, to pick up the phone and figure out who was on his staff, and the gentleman called me back, and I explained to him I was very disturbed by some things that I had seen, and he said, you know, Milton Schapp's running for governor, and I said exactly, and he said, well why would he be interested in what you have to say, or why would he care about this? And I said, well first of all, because his name's on this list as a board member, and he said, yeah, but he's running for governor, so he's not that much involved. And I said, well, I said if enough people are angry about this, I said if he is running for governor, it may be the 50 votes or the 500 votes or the 5,000 votes of those moms, dads, brothers, and sisters and aunts and uncles that will keep him out. The next day, Milton Schapp was down at that school, and took care of all the concerns that I had. And you know, I guess I had so much success that first time around that I figured I could keep it up. I know I don't always win, but -- yeah. So I think that that drove me on to doing it. And as I said, when I was a little girl, helping my sister one time when there was an issue on the street, where we tried to get -- just to get a street closed from one end, so that children couldn't get hurt on the street anymore, and we stood out there with signs, and I must have been about 12 or 13, but we got that street sign, and so I guess without realizing it, those things were making an impact on me, and I realized that you can speak out, and that there was power, and that people like Leona came into my life and kept inspiring me to continue doing that kind of thing. Because together we do have great power. We don't realize it as just, you know, average people that together, collectively, we have great power.

08:21:28:19 - 08:22:09:12 Lisa: Dee, how would you like to be remembered, do you think?

Dee: I guess that I've made a difference. I just -- I always say to even the folks that work for us at Vision that none of us are important, we're really not. It's the work that we do that's important, and that the synergy that we create, doing it together, and I don't think any of us need to be remembered for ourselves, because it isn't about ourselves, it is about what we've been able to accomplish together. That's the only thing that's important.

08:22:11:21 - 08:25:24:10 Lisa: Do you have any regrets?

Dee: No, not many. I think about it sometimes, about regrets, because do I have regrets? I don't think so. Sometimes I look back and I think, could I have done something differently? There are many times, I'm sure, when I examine how I did something, especially if I didn't succeed, if I had done it a different way, would it have made a difference? And I think it has, it has influenced me, as I do that to sometimes learn to speak softly and carry a big stick, rather than show the stick first and have a loud mouth. So I think it has influenced me, because I do spend a lot -- I take very personally what I do, especially in how it affects other people, and there's been many times when I sat at tables, advocating for self-advocates who had no families, and I would be banging on that table to get what they needed. And after, when I left, I worried that I left an awful lot of angry people behind with that person, and did I really do them a favor? So I think you do -- you can't do this kind of work and take it seriously without considering sometime the way you do it. But all in all, with all my reputations -- good, bad, and indifferent -- I have to say, I don't have too many regrets, other than how I might have personally not been able to do enough. In fact, I'll tell you another little story. This mom had come to me a couple times. She was trying to move her daughter. She had a daughter with significant disabilities. She was a single mom, and she really was having a hard time with the agency getting her moved, and this was, as I said, a young woman with significant disabilities. And finally I said to her, well let's meet together with them. I'll go with you, and we went, and we met with a roomful of people from the provider agency, you know, who were banging on the table and saying why they couldn't do what she wanted, which seemed to me pretty simple, to move somebody who, first of all, was living in a house where there were steps, when she really had difficulty using them, and with people who were a bit abusive, and she was very vulnerable. But you know, sometimes you can't figure all that out with them, but -- and so in the end, when we walked out of the meeting, it was dark and we walked back to the parking lot together, and she started to cry. And I said, oh I'm so sorry, I failed you. I said I wasn't able to get you what you wanted, and I said, I feel so bad. And she said, that's not why I'm crying. And I said, well why are you crying? She said, because it's the first time somebody's stood with me. And you know, I mean, they're the things sometimes that make the difference. It's not necessarily that we win the battle or that we get you everything you want, but that we stood by your side, and I think that that's what a lot of the families who work at vision do, and a lot of the self-advocates do with each other, is if nothing else, we stand by each other's side. And that's the thing that makes the biggest difference.

08:25:26:09 - 08:27:53:11 Lisa: Dee, you've talked about this as a civil rights movement, this movement on behalf of people with intellectual disabilities, and by people with intellectual disabilities. Would you consider yourself a leader in this movement?

Dee: An insignificant one. I really do feel I'm insignificant. I mean, when you think of some of the people, the Gunner Dybwads and the Tom Gilhools and the Eleanor Elkins, you know, I'm just another little, you know, clog in the wheel that makes it go round. Not really, I don't consider myself to be -- I might have made a big reputation for myself, but I don't really consider myself to be of any real significance. There's so many people in this country who have fought the civil rights movement beyond my wildest dreams. I remember many years ago, I was trying to get Gina into the office of vocational rehabilitation services, and the guy who was the head, I had gone to a meeting where he was at, and he was saying how everybody could get services, and the law said that, and I stood up and I read him a letter that said that Gina wasn't eligible to go, because of her significant disabilities. And he was certainly annoyed by my presence in the audience, and then I followed him to Harrisburg, and the next time he stood up it was in a meeting with a lot of people from the state, and I read the same letter again. And you know, he acknowledged me when he came out of the meeting, but several months later, he called me on the phone. He said, you know, you're making a reputation for yourself all over this state. He said, you're nothing but a little troublemaker. And I said, really? And he said, yeah. And I said, well you know, I think that's what they called Martin Luther King, Ghandi, and Jesus Christ. And although I'm not worthy to stand in their shadow, I just consider what you said to me a compliment. And I do believe that you need those people who are willing to be the troublemakers, to keep shaking those cages, and so we're not the status quo. So you can't be afraid when people, you know, confront you and tell you how awful you are because you stand up for what you believe in, and I think that still happens every day to people in the civil rights movement, you know, your troublemakers.

08:28:04:02 - 08:29:03:29 What are you proudest of?

Dee: I think I'm very proud of Visions, and Visions for Equality has given us an opportunity to really let a lot of families bloom, and to watch them and self-advocates, we've helped a lot of the self-advocates get on their feet, and to watch us be able to just build, you know, our little armies that keep fighting the fight each day, is -- besides my family, of course my greatest accomplishments are my children and my grandchildren, and I love them dearly. But certainly having had the opportunity to help people to grow, and to be able to do this, then build what we have built in a little bit of time, just a handful of people, you know, we've been able to change the world, a little bit.

Lisa: Thank you, Dee.