Chapter 4: Employment for John, Joe's Advocacy with ARC, Visits to Institutions

07:14:49:05 - 07:19:28:12

Lisa: I know that today certainly the transition from high school to adult life is often very challenging for young folks with disabilities. Was it challenging for John?

Joe: Yes. Yes it was but wasn't a challenge that upset us in any way or John. From the time he was in junior high school, we wanted them to begin to give John some education that would help him to get a job and we would mention it every year and they always throw a bone in the IEP for us but mostly nothing happened from it and uh we managed to get John some job skills by enrolling him in a manpower job where he was a camp counselor for Salvation Army Day Camp, [we] did that on our own. And he did that for three years, I think, which was really a wonderful experience and he also - we were concerned that he, that maybe they were being condescending and having him there to help us out, but I talked with a supervisor and he assured me that John was maybe the best counselor that they had in camp because he was conscientious about what he was doing, more than the other kids. But there was no vocational training for John at all and that went on and on and on and I knew that at 18 he would have the option to graduate, but he had had no job training aside from what we were able to muster up for him so I insisted... by that time there was a bill in the legislature that was going to require transition for kids and I think it was supposed to start by the age of 16 in that bill but we got it down to 14 before they were done with it. And I had a draft copy of that bill so I went to and I dealt with what was one of John's possibly last IEP sessions before he was 18 and said we would be interested in getting some vocational training for John if he stayed in school, and I had a copy of the transition bill in front of me and of course all the other special-ed regs. And so I made a suggestion. Shirley and I had talked this over. We thought John could learn better hands on then he could from just sitting in a classroom and learning about work and they had a General Ed program for all students who were not in academic or business curriculum and that general curriculum, they could go to school for half a day and then go to some job site to get on the job training for half the day and we suggested maybe that would work for somebody like John - and they were reluctant. It had never been done before so they were reluctant to try it. So we finally, at that meeting, got an agreement to have a six week trial of that. They provided a job coach. I was able to get for him additional job coaching from Office of Vocational Rehab because he was 18, and also from the local workshop and it's called ICW Employment Services. They had a supported employment division he graduated then at the age of 21 so his higher education in those years from 18 to 21 but he was still enrolled as a high school student. He had in those three years, about five or six different job experiences. He worked in a nursing home, he worked at a toy factory, at a supermarket, he worked in a voter registration office. He had those experiences and as a result of that whenever he graduated he had actually enough experience that he was able to build a pretty good resume and some of the people he worked for in his trial experience actually tried to hire him but for some reason or another, we turned them down. One of them was a job at Giant Eagle Supermarket and it was in the summertime when things were slow in Indiana and we had no idea whether they would keep him on after that. And the other one was with the County Office of Voter Registration and they actually put him in the budget, but the county commissioners lined him out because of short funding. but in December he got his first job.

One of the problems we had before that period though was the reluctance of people to give John what he needed.

07:20:20:00 - 07:21:58:10

Before he got the vocational training he was bringing math homework which involved mixed numbers and I tried to get them to be more realistic about what he needed to know, like how to read a bus schedule, how to tell time accurately so he could be on the bus schedule on time, how to read a map so he'd know how to get there. Those kind of... how to figure out a tip when you go to a restaurant, how to keep your money separated in your wallet. Those things weren't being taught at all. He kept bringing home his mixed number problems so I solved that because he began to get all of his mixed number problems correct. I bought him a Casio calculator that did fractions and I just believed that assistive technology was where he needed to go. He got his homework done in ten minutes and it was always right and then he had time to do other things. It was wonderful. John grew up so much in those days. He made so many friends. He learned work skills. Actually after the first six -week program they wanted to terminate it because he wasn't doing so well after six weeks but I told them, "Look what do you expect in six weeks? He's still learning something, so let's give him another six weeks. It can't happen overnight." After the second six weeks the same job coach that was critical about his accomplishments in the first six weeks said, "My goodness, he's turned it all around. We need to find new things to teach him." So John had a lot to do with it himself.

07:21:59:05 - 07:22:39:20

Lisa: So to what would you attribute to that success? What about John allowed him to turn it around in six weeks or so?

Joe: He so badly wanted to work. He just wanted it so badly, and I'm sure that almost everybody that hasn't worked would like to work and, once they started working, they'd start feeling better about themselves. They'd start to really feel like they're making a contribution. Just so many reasons employment helps a person, and John felt that. He really began to feel good... and he was able to get a little paycheck even though he was still in school so I think he liked that part of it too, but he made, he made a real effort.

07:22:44:15 - 07:24:42:10

Lisa: So Joe, after John graduated high school, began working, did that free you up a bit more to focus on some of the advocacy work you'd been doing with the ARC or in other areas of the disability community?

Joe: Did it free me up more? Probably not, because I was doing those things on top of everything else to the extent that eventually I suffered exhaustion... from exhaustion. I had to be - I had to back off of everything for a couple of years so but then whenever I got better I went right back to my bad habits of burning the candle of both ends, so probably not. My focus did change a little bit from John, although he still remains, of course, in my primary concern, to other people and even other types of disabilities. But while I was still working at... in my job as a college teacher I continued to focus on helping people with disabilities. In 1992, let's see John had his job in 1993. In 1992 I was the president of the State ARC and so I think it was probably a good thing that John didn't need so much of my attention anymore because I was attracted to so many things that were going on then. There was a big push, for example, in support of employment then and I hired a fellow from Temple University. I can't remember his last name, that's age. His first name was Tim [Vogelsberg]. He chaired my supported employment committee and he was magnificent, and anything was possible as far as he was concerned and I bought into that philosophy. I felt that everybody should have a chance.

07:24:42:11 - 07:26:14:25

Lisa: Is it possibly Tim Vogelsberg?

Joe: Yes! Thank you. I tried to remember his name yesterday so much. Is he still working?

Lisa: I believe out west but I don't know for sure.

Joe: Well, anyway, so I was so focused on supported employment that some of my fellow ARC people thought that I was advocating for the closure of all sheltered workshops, and I wasn't but I visited sheltered workshops when John was approaching the end of his schooling. You know, I even took John with us to see what it was like and see if he would like to be there. John made it very clear to us, and I already knew it wasn't what I wanted for him, but John made it very clear that he would rather stay home than go there. He saw what was happening and they were not doing meaningful work for the most part, and many of them could have been. Now I think it's much better. I think there's a lot less of that going on. So I actually got some pretty vitriolic letters from some people who, in the ARC, who were running sheltered workshops thinking that I was looking to close their workshops. What I was hoping to do was get those people who couldn't get competitive employment out of the workshops to accommodate the waiting list for people trying to get into the workshops but, anyway, if you're going to be an advocate, sometimes you have to take some lumps.

07:26:15:00 - 07:27:05:15

Lisa: Why do you feel parents resisted their children moving to competitive employment?

Joe: I think for the same reasons parents place their children in institutions; the lack of knowledge, the lack of understanding, they fear for their children's safety. In the matter of institutions, there were people who feared for their children's safety without realizing that most of the institutions they were in were extremely unsafe, but in employment it was the same thing. They were afraid they were going to be mocked, made fun of them, all of that, by the bosses. If they made a mistake and lose their self-esteem and of course the reverse is true; you gain self-esteem in employment.

07:27:06:15 - 07:32:35:10

Lisa: You mentioned institutions and I did want to ask about that because certainly in the early nineties when you were serving as president as Pennsylvania's association or Pennsylvania's ARC I'm sure it was called by then.

Joe: Mm-hmm.

Lisa: Certainly throughout the state and in particularly the west ARC was working very hard to either improve conditions in institutions or even close institutions such as Western Center. I was wondering if you had personally visited any of those centers, and what are your recollections of those visits?

Joe: Yes. I'll tell you a couple of things that I did. I went to Embreeville Institution in - near Westchester, and that one was pretty much a done deal. We were pretty sure the state was going to acquiesce and close the institution but the parents were in a uproar, so I went out there and talked to the parent's association, the parents group. Actually Paul Stengel from Montgomery County and I went out there. And Paul was kind of the bad cop and I was the good cop and we let the parents know the institution was going to close, and one of the reasons we wanted to close it so badly was they had an incident there where somebody was pushed down the steps in anger and had a couple of broken legs because of it. We met with the parents group. They were talking about how their children would be unsafe if they were put into the community, but they wanted their children in Embreeville because they felt they were safe there, and they were not. I mean it was just clear that they, they kind of had shutters over their eyes. The other one was at Western Center and I was on something called the Western Center Task Force. Now I wasn't quite president yet, when I had my first visit to Western Center. Charlotte Twaddell was the president [of ARC of PA] and she put me on that task force, and she might have even made me Chair I think. And we went and visited Western Center one spring day during a NCAA basketball tournament, you know, and apparently the people who worked at Western Center were really interested in watching basketball. It was a beautiful spring day. Nobody was outdoors. We were able to easily get into the institution unannounced without being noticed too much at the outset. Of course once we were there, the phones began to ring all over [the]campus, I'm sure, but we found the people in day rooms laying on pallets, staff watching the basketball. Supposedly the residents watching basketball but they didn't seem to be watching basketball. Some of them were lying in their own feces. The stench was horrible. It was just a very, very bad experience to see the way they were treated, and that made me understand something about institutions, how they had evolved. To my way of thinking placing that person in an institution was nothing more than incarcerating them because they had a disability. They may as well go to jail. They had no life. I watched them that day at Western Center eat. They took them into the cafeteria, fed them all in about fifteen minute sessions; three sessions. In and out, in and out, in and out; a couple thousand people fed. Many of them had no teeth, so most of the food was pureed. I've eaten pureed food for one reason or another in my life. I didn't like it at all, and that's what they got as a regular diet because they had no teeth. Found out that in many cases their teeth were pulled instead of being fixed. In those days there were a couple of scandals that occurred at other institutions. Some people were being kept in cages. Some people were being herded with cattle prods to get from one place to the other. At Western Center they had large key rings and they used to use those as like little instruments to move people down the hallways. It was just horrible and I knew that I had do something, that we all at the ARC had to do something to see that this stopped, so we did sue. The task force recommended it. We didn't sue to close it. We sued to improve conditions and sued - in the settlement agreement which eventually we were able to obtain. We insisted that anyone who was residing at Western Center who was capable of living in the community should be moved into the community within a short period of time knowing that full well that that probably meant everybody that lived there because over the years. I've probably visited institutions 40 or 50 times and I don't remember seeing anybody who wouldn't have been better off living in a community near where their hometown was. They could all live in the community. There's no excuse for it.

07:32:37:00 - 07:35:06:00

Lisa: Were you very firmly convinced that all could live in the community? I know that many parents were concerned that their child with significant disabilities might not be better served in the community. Did you feel differently?

Joe: Prior to all of those institutions was Pennhurst in 1972, and they had the same problem. Parents did not want their children to go. They did a study and at the outset they surveyed the parents and 90+ percent of them thought their children would be better off in the institution than in the community and they were afraid for their safety and other concerns; health, bad examples, mistreatment, abuse. Seven years later they did another study. It was a longitudinal [study] of the same parents and now 90+ percent I think it was 98 percent if I'm not mistaken, but I might be off a percent or two, of those parents said their child was better off in the community; much happier, feeling much better about themselves, and they were so happy to see their own children happy so yeah, I mean there was a lot of evidence that we could bring to those parents in Pennhurst and in Western Center but there were still some who were adamant about keeping their child there and you know a lot of people in the ARC that wanted to close couldn't understand these parents but I could because, in those early days, when I told you I was in that horrible funk. I don't even like to share some of the thoughts I had about John. If I had to make a decision say in the 2nd week I might have said yeah, he's bound to be better off. I wasn't thinking rationally. I was thinking as a very wounded human being. I think some of those parents that made those decisions did so under those circumstances and its unfair now to criticize them because they want their child to stay there. They made that decision. They've been satisfied with their children's lives up until this point and now somebody wants to tell them they did something wrong? No they didn't do anything wrong. They just made a choice and they're now trying to stick up for it. It's not that they did anything wrong. It may have not been the right choice but, back in those days, don't forget - there were no community supports either. It's a totally different world now.

07:35:08:00 - 07:37:05:15

Lisa: Again I'm wondering how those two radically different positions could live side by side.

Joe: Well, they really can't. My feeling was, in those days, was that every person in here needs to go and I don't care what their parents think, but the other feeling I had in addition to that feeling was a humongous amount of compassion for those parents - and a lot of my colleagues didn't. I mean they just thought, some of them thought, the parents were out of their gourds, you know, but they weren't. I mean, they did what they thought was right and now they're defending their choice that they made years ago, in spite of the evidence. I know they were looking- not looking at it clearly, but that doesn't mean that they were mean or wanted their kids to be in danger or wanted their kids to live in a terrible place. It doesn't mean that at all. I think you had to have... the ARC and myself as an advocate advocates for people with a disability, not for the parents. We advocate for people with the disability but we can't forget the parent's role. They are the parents of these children, and so we must love them, and must care for them, must have compassion for them even though we're doing something to their children that they don't like - and we must be ready to be sued over it. We must be ready to be castigated over it. {we must be willing to be] called names over it by those parents and still like them anyways because they think they're doing the right thing. They're not bad people.

07:37:06:15 - 07:38:49:25

Lisa: An attorney who was involved with Pennhurst litigation said to us that Pennhurst represented a broken promise to parents. Would you agree with that assessment?

Joe: Yeah, yeah. You know and also, I do believe that there were people who worked in the institutions that did their best. I mean they did everything they could possibly do. It's just a model that doesn't work. I think large conglomerate settings for anything is not probably a good idea because when you have certain people who are in supervisory positions, after a while they stop thinking of the people they're working with as people and they think of them more as bodies than as people. They get, develop what I called the herding instinct, herding: H-E-R-D-I-N-G. They herd people along, you know? The cattle prods and the key chains because that's what you do whenever you have a large group. You can't just tell them all to move because they won't all move anyways so you herd them along. It's inhumane but some of the people that work there - - and even now... I visit nursing homes now. That's my new... that's my new, my new stroke. I see the same thing. I see people who work in those places doing the best with what they got. Lots of compassion, lot of caring but some of them are not doing the right things because they just don't think they can or are overworked. They don't have enough hours in the day to do the right thing.

07:38:51:25 - 07:40:56:15

Lisa: You mentioned that you're visiting nursing homes. Is that in relationship to your work in the disability community or something different?

Joe: It's something different because my father was in a nursing home for six and a half years after a massive stroke. He couldn't even swallow water. He couldn't help to even change [his] position in a chair. He couldn't, he could offer no help. My mother-in-law was there too because in her last five years she became paranoid and frightened 24/7, so she needed 24/7 care. And we did it, as long as we could, but we could no longer afford the 11-7 shift and we had to put her there, and we knew that there needed to be some changes made and we've seen some changes occur in the nursing home business. So no, it's not related to the disabilities, however, there are some similarities, not similarities, some real strong linkages. Sometimes when we go to the nursing home we are amazed at the gifts that people in those nursing homes can give us. Even though they are bed ridden they are examples to us from day one of patience, of perseverance, of endurance, of kindness, and it's just a very, just a different thing that the workings of the person with the disabilities although they too have those very same qualities. They have gifts and we don't recognize it. When I leave the nursing home on Tuesdays, Tuesday afternoons, often times I'm given the farewell, "God bless you", and I always say, "Well he just has because just witnessing what I see there is a blessing to see." I get that same feeling when I see a child with a disability grow into a man and get a job and get to work and be proud of himself. God blessed me for helping that happen? No, no. I'm already blessed.

07:41:37:00 - 07:43:41:25

Lisa: As a leader of the ARC in a time that was very divisive, how was your leadership able to influence members of the ARC? Were you able to help people find common ground for instance?

Joe: That's one of the things that I've been given credit for is that I've been a great mediator and I think some of it has to do with trying to mediate the arguments my own children had as I was trying to raise [them]. Sometimes it's been with five teenagers at one time. Yeah, I just - I can't get down on people, you know? If like they have the opposite view from me, I'm not going to say they're no good. I'm going to say "I love you" anyway. Let's get together and work this out and I... there were some extremely confrontational meetings in the ARC during my presidency where we were pushing for supported unemployment, inclusion in the schools, and the closing of institutions and there were camps on both sides of all of those issues where we had to get together and meet in the... one thing you have to understand is back in those days the board of directors of the ARC of Pennsylvania was about seventy strong. Every chapter in the ARC sat on that board in addition to regional vice-presidents and then with the executive committee and board officers. When we had a board meeting it was, we weren't always there, maybe it was only fifty but it could have been as many as seventy-some. So you have all sorts of diverse viewpoints and you only have a limited time to discuss things. I think one of the things I brought to the table having been a teacher and having to talk to large groups many times uh was the ability to listen and know when to cut off debate and try to get us to get to common ground and do so without any animosity after we gotten there. I think that was one of the things I brought to the table but even more than me there was a president after me, Ed Titterton was his name, I think. I think I gave you his name. Ed Titterton who had my mediation skills beat by a ton. But yeah those days that kind of skill was important.

07:43:52:00 - 07:46:51:25

Lisa: How did you learn how to be an advocate?

Joe: At the ARC. There were people in the ARC who were my teachers. Some of them unknowingly and some of them consciously mentored me. Bill West who was the Executive Director at the time, he was an ardent advocate and he didn't care what he had to go through and what he had to put other people through to get what he needed for our people, and I loved him for that. Of course it wasn't too realistic most of the time when you're dealing in political it doesn't happen that way but Bill, he wouldn't give up an inch. He knew his people were wonderful people and that they needed some help and he was going to get it for them. So he taught me something about sticking to it and never turning your back on the goal, and I loved him for that, and there were other people that taught me things about patience, about how to be strong. When I was president there was a woman who I admired so much, Teddie Leiden, who made it her business to write to me every week and she would tell me what I did that she didn't like - but she always told me what I did that she liked too, you know? It was always something at least a little bone at the end of her letter that she would give to me to make me not lose hope in my ability to learn, but she taught me so much in those letters and gave me so much confidence. Charlotte Twaddell who was there during a difficult time taught me a lot about relying on other people to do things and giving them their head to do what she wanted them to do and not interfering. She just gave it to you and you did it, and that was fine, and she taught me to have courage to do that too with some of my committees. So and people were so hardened. It was their life. I mean Marty Murray who was in Philadelphia, worked in developing community services for people. I think he gave his life to the cause. He died kind of unexpectedly. He was fairly old but still he still seemed to have a lot of energy, and one day he was gone. Marty gave it all, gave it his all, and I could go on and on. There's just so many of them and today there are people; Marsha Blanco here in Pittsburgh. What a mentor she was to me. She told me how much she respected me but the fact was I knew that she had much more knowledge than me so I picked her brain on almost every issue. And out east there were people like Paul Stengle and some other people who I relied on. People who are still active today and still working today; so many people like that.

07:47:22:00 - 07:48:43:00

Lisa: You described the board as being seventy plus people at any given time. How were they able to accomplish so much despite all these differences?

Joe: I really believe we loved each other. We were in the same boat and we loved each other, and we loved the cause, and we weren't going to let differences between us scuttle our ship. We were going to still go forward. I really believe that's what held us together. It wasn't... It was nothing more than the love we had for our kids that held us together, really ,because it gave us those feelings. We're going to love you because you and I are thinking about the same thing. We want our kids to succeed no matter how it was. I remember meetings where we would be arguing vociferously and after the meeting we'd go out and hug each other and have a drink with each other and chatting and be the best of friends. We had that ability and I think it was the cause that gave it to us. Now it is not that way anymore. We have a streamlined board of directors now and I think it's much more efficient, but we had a lot of fun in my day.