Chapter 3: Ginny's Advocacy in Pennsylvania

23:27:32:15 - 23:30:39:04

Lisa: You have mentioned your fondness for the ARC and how important the ARC is to you.

Ginny: Yes.

Lisa: What did it mean to you as a parent when you first became involved?

Ginny: It meant the world, Lisa. Because I was not then just thinking about Peter's rights and opportunities, when I began to think about what the law stated, and what the needs of other parents and children were, and it just opened my eyes up to a whole field of advocacy that I had not known before, and again, the Allegheny County ARC, which is now called Achieva, a superior program, and I became a close friend of Bob Nelkin's.

Bob Nelkin was the main advocate at that time, and his particular interests were children and adults who were institutionalized. They were then called state schools and hospitals, and then they became known later as centers in Western Pennsylvania, we had Western Center, Polk Center. Of course, many of your viewers known Pennhurst and in the middle of the state, Ebensburg, Crescent. Probably, I'm going to guess, nine or ten institutions where men and women and children who had the word, then mental retardation, we of course say intellectual disability, lived and received their program.

And so Bob was the one who first took me out into review and see what institutional care was like, and we had -- there were two other moms I traveled with, Jean Isherwood and Barb Cystic.

Bob Nelkin was the driver and we would go to inspect, make unannounced visits to these centers, and our moral obligation was that there were people from Allegheny County, our county, living there and being served there, and we would hear of abuses, we would hear of a lack of programming, and we were following up on that. Bob trained us well.

He didn't speak, he was expecting the mothers -- we were mother bears, and it was our job to explain why we were there to the superintendent, and what we expected to see. We had heard troubles on Unit Four, we had heard problems on Unit 20. We wanted to see the quality of care being offered to children, and Bob taught us that we had no right to visit unless we in fact improved the quality of care for those children and adults. Just going in and interrupting program would be wrong, but if we in fact could make a difference, then we had a right to do that.

23:30:52:22 - 23:35:25:08

Lisa: So Ginny, we were talking about your involvement with the Allegheny ARC, and your visits to state centers, making sure that people, residents of Allegheny, who were -- residents of the centers, my apologies, were receiving appropriate support and care.

But you didn't always see appropriate supports and care on your visits, and I wonder if you could tell us a little bit about some of those visits and some of the conditions you found.

Ginny: You remind me of a discussion, or a confrontation we had with a superintendent who said, well are you more interested in safety, or are you more interested in program?

And one of us, I'm not sure it was my voice, might have been one of the other mother bears, said "That is an immoral question". The men and women and children who live here have a right to both safety and program. So we were learning, we were learning not only what the regulations in Pennsylvania specified about what kind of program occurred, but we were learning about very, very dismal and unsafe conditions.

I'll tell you about one of them.

Western State School and Hospital, Western Center is very near Allegheny County, and that was the first center I visited when I began to be an activist and then an advocate for Achieva.

And I had visited several times, but this particular occasion we were investigating, because a resident had choked on a piece of gristle, the meat that had been served this person for dinner, and incidentally, it had been required by the Department of Health that it be a pureed meal, and this was a piece of gristled meat that this person had choked on and had to be hospitalized for.

We came in immediately and were able to grab the tray -- not that particular person's tray but a similar tray -- from the kitchen, and take it with us after we did some investigating about that particular situation, and take it with us, and then three days later, we testified -- Allegheny ARC Achieva -- testified in the Senate hearing about that situation. We were able to draw enough attention to that person who actually died, and that situation which was so wrong that additional staff were authorized for Western Center, 40 additional staff. Now, I can't tell you that the whole place was safer, but through our advocacy improvements were made.

The second center that was very important to me in Western Pennsylvania was Polk, which is way up north near Erie.

The town is P-O-L-K, but all of us who know people there call it Poke, as if it were P-O-K-E, and that -- I'm guessing there were -- excuse me, Lisa. I'm guessing there were 4,000 men and women and children living there at that time that we began to visit. We began to visit because we got reports from parents, from staff, about unsafe and poor programming conditions, and one of the moms I traveled with had a daughter who was actually in the children's unit, so we would go with her and of course visit her, her daughter. I have so many memories burned into me from that place. I'll share two of them.

23:35:33:07 - 23:39:26:28

One is that the toilets that the men used had no toilet seat. They were just open toilets, and there was no screening for a person. So you looked in to the men's bathroom and there were maybe 18 toilets lined up, with no privacy at all. And that type of situation is so wrong, you and I talk about dignity and respect as that which is afforded any human being, to not be able to have a toilet seat and to not have privacy when you're using the bathroom is unthinkable.

And another similar situation, a men's dormitory with 10 beds, and the beds were pushed together four by four by four, so that if you were in one of those beds, there was another man beside you and another man touching your head. And if you were caught in homosexual activities you were punished. You had to push a scrubber, and the scrubber was a wide broom with a heavy weight on it, so that was your punishment if you were caught in a homosexual activity when four beds were pushed together as closely as they could be.

Unthinkable, Lisa, and that's what we encountered at Polk State School and Hospital, Polk Center.

I know you and I have, in preparation for this interview, talked about another unthinkable situation at Polk, which is that people were buried, people who had no family, were buried under a grave marker, a headstone, that had a number, 573, 222, a number. It didn't even say rest in peace.

Now if a family member then claimed the body of somebody who died, that person would then be buried in the community, but many people did not have family members and were buried in this cemetery, and the time I visited, there were 1,400 graves marked by a number. And somehow, that for me was just as bad as the toilets that had no seats and no privacy. For every one of us is known by god and named by god and for us to not be remembered by name and the date of our birth and the date of our death was unthinkable.

And so that became a major cause for me, a personal cause, and a whole bunch of people agreed, and people donated money to that effort, and eventually when my husband Dick was Governor of Pennsylvania, that cemetery was rededicated and all 1,400 graves were now named and had the date of birth and death of the man or woman or child. So I was learning -- I was learning about what is right and wrong in life, and that we can as citizens do something about it.

23:39:28:19 - 23:47:56:21

Lisa: Ginny, it's so difficult to comprehend, particularly in a post-Holocaust society, that we would assign a number to an individual, and you describe abuses and neglect, even bad conditions that people were living in. We've heard stories that are even worse from institutional days. Is there a person or people you would hold accountable for these kinds of conditions?

Ginny: That's a proper question, Lisa, reminding you and the viewers of this interview that my husband Dick Thornburgh became our governor in 1979, 1979 to 1986, and Dick of course loved Peter Thornburgh as much as a man can love a son, and had been beside me in many of my activities.

It was a system that was evil, it was not, in most instances, individual people who were evil.

I don't think they had role models, I don't think the people doing what was in adequate had another model or another expectation. The expectations were low. These were people with intellectual disabilities, and they couldn't live at a very high level. That was always the -- if we can keep them clean and dry and from hurting themselves, we had done a good day's work.

But I've never blamed even the superintendents for the care that they offered, although, having said that, at Polk, one day we made an unannounced visit because we had heard that there were cages being used to constrain people, and we walked in on a cage that a young man was in, a man who was active, very, very active. I'm not denying that, but the cage was so small he could not stand or lie. It was that small, and we immediately called Helene Wolkemoth, who was -- obviously we spoke to the superintendent, we called the Secretary of Public Welfare who (inaudible) and she either the very next day or the day after, I don't recall how quickly, came, saw the cages, and fired the superintendent. So in that case, again, our advocacy was helpful.

But to even think that a hyperactive young man was receiving program and safety with that is unthinkable. And that was Polk.

Another center that may interest you, Lisa, is Ebensburg. Lots of reports we would receive from Ebensburg Center, that's in Central Pennsylvania. Now I remember a day going to Ebensburg, and being in a room that was tiled, and unfortunately the Commonwealth Pennsylvania often used sort of green, a medical green or a tan that had some green in it. This room was tiled on the wall and tiled on the floor, and there might have been 20, 25, maybe 20 men, young men, very active men, in that room. But they weren't walking around, they were all sitting at the edge of the room, with their legs out in front of them and the person -- the program person who looked like a prison guard, was walking around each -- in front of each one, walking the circle around these men, twirling his keychain, which had I'm guessing ten, 20 keys on it, twirling it in what I would call a menacing way, and from that experience, it was again overwhelming experience to us.

We began to think of these kinds of rooms as rooms that had a hose-down mentality. So how do you clean up after these men have gone into another program area? Well, probably there are some feces and urine on the floor or on the walls, so that became your environment, the very walls told people who they were, and what was expected of them, and we would see that time and again, where we would see instead of where people traditionally normally live, with wallpaper and walls and carpet and chairs, we would see rooms where low expectations were delivered.

That same day, we interviewed that man. Again, that man, I can't call him evil, although clearly what he was doing was evil. We interviewed him. He had passed the test for a state job.

I don't know the name of the test. He had hoped to work in forestry in the state parks.

There were no openings for him, and so he had applied for this job at Ebensburg Center and had gotten the Center. So it was not fair to him to ask him to do a job -- I assume he had some training, but people knew what that room looked like. So maybe he was at fault for agreeing to take that job, but they're all levels of fault, and it was a system that was wrong, it was a system that was wrong.

And again, we're reverting to my beloved husband Dick.

When he became governor, and he then hired Jennifer Howse to be the person in charge of services to people with intellectual disability throughout Pennsylvania, and that interview would have been in '79, 1979, and Jennifer said to Dick, "I'll take the job under one condition", and Dick said, sure Jennifer, what's that? And she said, "as long as we can close Pennhurst". So that's an exciting thing, where you have somebody coming forward with a program idea that was right and good and needed, and Dick said, we'll do it. And it occurred.

23:48:25:00 - 23:50:40:15

Lisa: Ginny, there were so many changes happening in the '60s, '70s, even into the '80s, in terms of advocacy in the disability community. It almost seemed like a golden age of advocacy.

I wonder what your reflections are about that time.

Ginny: It was hard work. I never thought of it as golden. It was very hard work. We learned from each other, we strengthened each other. We as parent advocates learned so much, and you know that learning and that advocacy helped us heal; instead of just concentrating on our own son or daughter or brother, we were able to see other people, and that was a very strong healing process. I see people advocating now in just as strenuous ways. They may not be looking at institutions with six, five, four, 3,000 people in them, but you know, as a mother, as a parent, as an advocate, you never rest. You never rest.

There is always -- even though my son is living on his own in a very good situation, I never rest.

I'm always alert that I need to be there for him, and I need to be looking around the corners for things. So I think we gave birth to advocacy in Pennsylvania, but it goes on now wonderfully.

Actually, advocating for people in the community, in group homes, in supervised apartments, in houses -- very strenuous and important activity. In some ways, harder than if everybody's in a congregate institution where you walk in one door and everybody's within four or five buildings.

Now advocate -- I don't think of it as a golden age, we just made it an important part of the work that is done to guarantee safety and program, to guarantee respect and dignity.