Chapter 4: Self-Advocacy and Advocating for Others
13:22:33:20 - 13:23:02:10
Q. Do you remember when you first became aware of idea of Self-Advocacy?
A. I… When I first started with Self-Advocacy…uhm, I was still doing trainings through the Partnership with Jeanine Schultz, she's a really nice lady and she really knows her stuff.
13:23:14:10 - 13:23:39:15
Q. Maybe you could start by telling me what the Partnership is?
A. The Partnership is a…an organization that does training with…materials that are for families that have sons and daughters…uhm, with disabilities.
13:23:40:25 - 13:24:10:15
Q. And what kind of training do you provide?
A. Like how to understand the workings of the images of MH/MR department…I mean, system. Uhm…how the PUNS work, and the waiver system, the waiting…the process of the waiting list.
13:24:12:25 - 13:24:31:15
Q. I imagine those topics those systems are very complicated and hard for families to understand, how do you help them to understand those complicated systems?
A. The more you give them the knowledge the easier it will be to remember.
13:24:34:05 - 13:25:19:20
Q. How did you begin to work with the Partnership, who recruited you to do the training?
A. I was in the sheltered workshop in Wilkinsburg, and then uhm…what happen was I said, "There's got to be something I can do to get out of here"…I mean there. And uh, I found out about this thing called the Partnership and I thought this ought to be fun thing to get involved in.
13:25:21:25 - 13:26:03:05
Q. I want to go back to something you just said that was so interesting. You said you were working in a workshop, but you wanted to get out there. Can you describe, for people who don't know what a workshop, is what your workshop was like and why you wanted to leave?
A. What a sheltered workshop is it's like…uhm…they do various subcontracts…and the volume of contract work was very low…and even today it's getting lower and lower.
13:26:05:10 - 13:26:26:15
Q. So, for folks who are working at a workshop and the volume of work is low, what do they do with their days?
A. They have a thing called "supports" where individuals can read, write and mingle.
13:26:31:00 - 13:26:58:20
Q. Are people well paid for working in the workshops?
A. When they're working, yes… But, the pay is very low. Some of the contracts are every two weeks you get like $2 or $3 every two weeks.
13:27:02:15 - 13:28:21:15
Q. That's certainly not a living wage.
A. That's true.
Q. So, why did you want to leave the workshop, particularly?
A. When I was Wilkinsburg I felt that things weren't going as well as it should…and the more I said anything about it they were ready to get rid…to let me go anyway, so I gave them a head start…myself a head start so they wouldn't have to. I wanted to be at another sheltered workshop at the strip district, but know I'm in the process of getting out of there…taking baby-steps to do so.
13:28:26:25 - 13:29:19:24
Q. What do you think it will take for you to leave that workshop?
A. I don't think it would take long…the more I speak up and speak my mind, miracles do happen, and besides now that the people are getting off the waiting list and coming into the sheltered workshops it's going to cause over crowding…just some of the clients might have to be pulled out, and I hope to be the first.
13:29:22:05 - 13:30:00:20
Q. When you're pulled out what will you do next?
A. I'll still be doing my work with Advocacy and the Partnership, and still keep making…there's many ways to make money, you can freelance, you can stay with the Partnership and… ACHIEVA and get a fresh start in life.
13:30:33:05 - 13:31:11:00
Q. So Larry, I want to go back to what you were telling us about working for the partnership, uhm, you talked about being invited to do training, what was it like the first time you stood-up in front of a room and had to train people about this very complicated service system?
A. I loved it.
Q. What did you love about it?
A. Having all the people asking questions and being able to answer them right away…I did real well.
Q. So, tell me when you first became involved with the self-advocate organization and what the first organization was that you became involved with?
A. The first was "Speaking for Ourselves"…that was a group downtown on Smithfield Street.
13:31:40:20 - 13:32:04:05
Q. And how did you learn about the group?
A. Through ACHIEVA…and when it was still Arc Allegheny.
Q. Do you remember when that was?
A. That was…early in the '90s.
13:32:06:15 - 13:32:35:05
Q. Had you ever met a self-advocate before you went to that group?
A. I think I have.
Q. Can you tell me about the first self-advocacy meeting that you attended?
A. Uh…one was…there were so many…I would say that everyone was my favorite.
13:32:37:00 - 13:32:58:15
Q. Can you tell me about some of the people you met there?
A. Uhm…people with disabilities mingling with them finding out how they…live their lives…and learned a lot.
13:33:00:05 - 13:33:25:10
Q. Did you hear stories from people that lived very different lives than the life you led?
Q. Were there any stories that come to mind that made it particular impression on you?
A. I think stories about the history of the movement got me interested even more.
13:33:28:15 - 13:34:07:25
Q. Speaking for Ourselves, uhm…did a lot of advocacy around lots of different issues, and I'm wondering when you were a part of the group what issues were important to the group at that time?
A. I would think that a…the people that…the people that I've met and knowing that I'm…and let them know that I'm there…if they have any questions.
13:34:42:05 - 13:35:12:10
Q. I know that in the '80s and in '90s when you were part of "Speaking for Ourselves" one of the big issues was their "Close the Doors" campaign.
Q. Can you tell me what that campaign was?
A. Uh…that was when people were being taken out of institutions and brought out into the community.
13:35:15:00 - 13:35:33:20
Q. Did you meet people through "Speaking for Ourselves" that had been in institutions?
Q. What was it like for you to hear those stories?
A. They were heartwarming and interesting.
13:36:28:25 - 13:36:56:00
Q. How did it feel for you to be advocating not only for the issues that were important to you, but also for issues that affected other people with disabilities?
A. I think the work that I do makes them know they are not alone in the world, and have them feel better about themselves.
13:36:59:10 - 13:37:19:10
Q. What did your family think about your work as a self-advocate?
A. They loved it.
Q. Was there a time when they came to hear you present or speak?
Q. What was that like for you?
A. It was nice.
13:37:22:05 - 13:38:05:20
Q. I know you started your self-advocacy work as a member of "Speaking for Ourselves" are you still a member of that organization?
A. I was with "Speaking for Ourselves" until uhm… I think it was around the early '90s when I started with the Partnership…I'm on my either 7th or 8th year with the Partnership, and I'm enjoying the ride.
13:38:07:25 - 13:38:38:00
Q. Are you still a member of "Speaking for Ourselves"?
A. No I'm not…right now I'm an assistant trainer for "Self-Advocates United as 1" and I'm also a member of their board, and I still do Partnership trainings.
13:38:50:28 - 13:39:25:20
Q. What are some of the issues that "Self-Advocates United as 1" have been working on?
A. Trying to secure a good future…either financially or personally.
Q. And, how do you think people with disabilities can do that?
A. With a lot of knowledge and a lot of support.
About Larry Kubey
Board membership, Community, Disability Rights Network, Equality, The Partnership, 'R' word, SAU1, Self-advocacy, Speaking For Ourselves, Workshops