Chapter 5: Advocacy

15:15:14:10 - 15:18:09:00

Lisa: You're talking about some of your advocacy work. Did you and Harry consider yourselves to be partners in advocacy?

Janet: Yeah. Um, yes because as I was trying to get out of the institution, Harry was a member of the Open Doors for the Handicapped. In the late '70s Access was born and I was a part of that with him and in attending care I was with the adults when they went after in the '90s and also, um, Harry and I were advocates for getting lifts on the buses and also the ADA thing. But Harry had to quit after he, after he got sick in '83 and I kind of took over for him. But he always said to people, after I got the business, you know anything that Janet wants, she goes after, she gets it and he said you can't keep her down and she'll find a way to do it or have people do it for her. And that's why now I'm a successful advocate because I belong to so many committees and boards and I'm happy with that. It's like being rich, without the money. And the other committees, I do belong now is the City County Task Force on disabilities for people and I think I got that one backwards but that's okay. I'm on the Consumer Health Coalition and I'm Vice President of CLASS. It's no longer UCP CLASS, it's just CLASS and I'm their Vice President.

15:18:09:25 - 15:20:27:00

Lisa: So, Janet, by serving on committees and boards what do you think you've been able to contribute or what have you been able to do to benefit other folks with disabilities?

Janet: I help them see that they can have what I have, I just went after it, in a nice way, and I showed how to get things and I inspired them, I guess, say why are you sitting there, go after it. Show them what you can do, tell them what you need, there are services out there. And I think my being a voice for the ones who can't really speak up too much and they hear me and now I'm seeing the younger folks trying to step up because if they don't keep our fight up they're gonna lose it. And now we're in the process of doing this film for the disability movement, they can preserve the history of it. Tell them were you come from, which I have. You know, being institutionalized, being my own motivator to get out and showing the world no I'm not retarded and seeing what I can do, I always think about a lady. I don't know if she's still around but she told me, just that she was telling some other ladies, just imagine if Janet wasn't a disabled would have been the biggest leader now or would she still be cooped up in the institution.

15:20:32:20 - 15:21:23:10

Lisa: Janet, I wanted to ask you, firstly, how long you and Harry were married?

Janet: 27 years and he's been gone eight years and I seem to do okay cause people were worried about that, but I'm not worried about it because I have foresight and I have a good relationship with my God and I just try to do what's right. And even though some battles you can win and some battles you can't but then again, its human nature.

15:21:25:10 - 15:21:39:25

Lisa: Janet, are your parents still alive?

Janet: No. Um, my mother died I think about 8 years ago, my dad died in 2010.

15:21:41:00 - 15:23:29:15

Lisa: They certainly lived long enough to see you become a great success in your life and work. Did they ever tell you that they were proud of you?

Janet: Only my mom. My dad and I did not have that relationship. Um, my mother did but she ended up having Alzheimer's and my mom's sister had it and my grandmother had it but I asked my uncle before he passed, um, he saw me in February, I think , in '08 and, it might've been '07, and he was proud of what I've done and so was my co-, his daughter and her daughter. I don't think my mom really realized what I had done in my life. I don't think she really realized that. My dad, I guess he was sort of proud of me, for the last five years of his life I had no contact with him because he couldn't hear me and I didn't, I had a hard time talking with him anyway, so. To me it's okay.

15:23:30:10 - 15:23:58:15

Lisa: Were you able to continue your relationship with your sisters?

Janet: No. The one sister I hadn't spoke to in about, really spoke to her in about 25 years and the other one, when my dad passed I thought we could start something but that never really materialized.

15:23:58:20 - 15:25:45:15

Lisa: So, Janet, which relationships are most important in your life today?

Janet: My friends and the people I hang out with and the ones that take care of me cause I have a live in and I have 12 hours of help every day and I always tell them you take care of me, make me look good, make sure I'm okay and I can help other people to raise awareness, to speak to people and tell them that yeah, we're all different but yet we're all the same. We want to live our lives to the fullest, we want to be like other people and I, even though I was born with my disability I don't think, I know I have it but I just deal with it and go on from there and act like I'm normal, which I am, in one way I am. It is ___ cause I think I learned to live with mine and now I'm learning to help people with their, to live with their own disabilities, that there is life after the initial disability sets in you can work with it.

15:25:46:05 - 15:28:13:20

Lisa: Janet, I would love to hear your perspective on something. Today, well, the people who've been living in the community, people with disabilities, for many, many years, 40 years, 50 years depending on who you talk to. Um, but having a physical address in the community isn't the same as being part of the community.

Janet: Yes.

Lisa: Do you think that people with disabilities, living in the community today are often isolated or are they successful in become parts of their community?

Janet: Some are, some are isolated because they choose to. Some are not, they're very outgoing like I am and they want to be a part of their community and right now what is tough is, especially when you have a mixed community with younger and seniors, especially when they have disabilities, especially mental disabilities cause they look like they're fine and they're not but it's awfully hard to work with seniors and the younger generation. It's hard because seniors remember how they did it, the young ones are trying to fit in but it's awfully hard but the ones that are starting to be advocates they are now gonna carry on what we had started and continue to keep ___cause I said I'm gonna retire at 60. They said, Janet, you're too valuable, you're not gonna' retire. And guess what, I'm here to stay as long as I can do it.

15:28:14:15 - 15:29:36:25

Lisa: Janet, what do you think are some of the biggest challenges facing the disability community right now?

Janet: Um, keeping services, that's the biggest challenge and also the other big challenge, if you become disabled will the monies be there for the services cause the younger generation now has to come up with solutions like we did in our day. Like I had to learn from another generation who had to with the Legislatures, I'm doing that now and hopefully the next generation coming up, 25 year old, the 30 years, really try to keep the services they have now because money is hard to come by now like it was back then.

15:29:37:10 - 15:32:17:15

Lisa: What will happen if people lose those services or if they're drastically cut back?

Janet: It already has started, they're going back into nursing homes, going back into institutions and it's very hard to get out, so. They will lose everything if they don't come together and say what they want and show what they need because you need to work with Legislatures, with government people, the people who run the programs, you need to tell their story, tell your personal story. That's what you need to do and come up with solutions. Don't be radical because then they'll look down on you. Just come up and talk with them. It's okay to rally but you have to rally in numbers because that's what I've been doing, going to Harrisburg and saying my little piece or my little chant and people were listening. And I had one lady says, I heard you on radio or I seen you on TV and today I heard someone say I've always wanted to meet you because you are a positive person and I said I only want to live my life as normal as I can and I just find out what to do, how to do it and I'm trying to stay out of a nursing home or an institution. That is my fight, and it's hard. And the future, from what I hear, is gonna be rocky because if people don't get the right kind of help through the attending care or get jobs where they can make money to help take care of their own needs then we're gonna step back 50 years and I don't want to see that happen.