Chapter 2: Supporting Peter (son)
23:11:46:12 - 23:12:55:08
Lisa: I'm wondering if you could tell us, Ginny, a little bit about what Peter's specific needs were, and apart from Dick's encouragement, were there any supports or services offered to you at home, to help meet Peter's needs.
Ginny: No, not really. The children's institute Peter was attending -- that's interesting, we didn't have a social worker. We had great family, and wonderful neighbors, but no official supports.
That's interesting. But the home, the children's institute provided wonderful advice, and encouraged me to join the ARC, the Association for Retarded Citizens, in Allegheny County, which is the county surrounding Pittsburgh. We had a very strong chapter, and the minute I got involved with the ARC, that changed my life. So that was really my strongest outside support system, yes.
23:12:55:10 - 23:15:36:27
Lisa: I would like to ask you more about your relationship with the ARC in a little bit, but I know that it's often hard for families to meet the needs of their child with disabilities. Sometimes there's tension in the house, or siblings maybe feel like they're not being afforded the time because so much attention is given to the child with a disability.I wondered if Peter's disability was just a natural part of your family's experience, or was it ever difficult on the family, trying to meet his needs?
Ginny: I was young and very energetic, and so I don't remember -- I believe I served pretty well all three sons. It was with the birth of our fourth son as a baby and a young running around child that I began to feel a little overwhelmed with all of that responsibility. And I hope I did an evenly good job.
My pediatrician said a wonderful thing to me once. He said, you have four sons, and you shouldn't divide your time 25/25 or in quarters; there's going to be one of your four sons who needs you the most, and that son should receive 40 percent of your time. And then he said, and likely that's the least one you want to be with. In other words, it may be a son at that moment not cheerful or not following through their responsibilities, but I thought that was a great parenting advice. It's the son that's making you go, oh my goodness, that needs you.
Peter, we had sitters that helped us, particularly around the mealtime. That helped, and I had a great husband, and he would remind me -- he'd say, you know, Ginny, you have really five of us who need you, and I think he did that mostly when I would get so involved in Peter's care or so involved in the ARC, the work of the ARC, that I needed someone to remind me of the full range of my responsibilities. That is a challenge for families, and any family listening to the Institute of Disability -- Temple's Institute of Disability, this particular film, understands that I hope all of my sons know how much I love them, not just Peter.
23:15:39:06 - 23:19:27:01
Lisa: Thank you. At one point, I know that Peter -- the folks at the home for crippled children.
Ginny: The Children's Institute.
Lisa: Now The Children's Institute, I should say, at one point felt that they had served Peter as well as they could, and you sought to place him in a public school, schools now made accessible thanks to the Right to Education Act, but I'm wondering if you could tell us a bit about your experience with entering him into the public school system.
Ginny: I tried to think, in preparing for this, the day that -- Peter was at the Children's Institute starting January of 1964. My guess, he was there for two years, and then I remember sitting with the social worker connected to the Children's Institute, Helen Patock, who said, now Ginny, I know how attached you and Peter have become, but it's time now for Peter to enter public school, and so my guess is, he might have been five or six, and it just had never occurred to me, and I felt -- she said, well why don't you go and visit, so I can completely see that school. Because for public school then, in my mind now, a brick building, it was a rainy day, and the class that Peter was to join was in the basement of the building, which should have been a clue for me from the beginning, and I entered the room, and the room had the furnace in it. The furnace was there.
There was a screen around the furnace, but that's where the furnace was, and the children were there, and they were making potholders. They were making potholders, and I knew -- the Children's Institute had raised my expectations for Peter's life, and the rights of people like Peter, children and adults like Peter, and I knew that a classroom making potholders was not proper for Peter. Also, the windows to the room were way up high, and because it was raining, they were sort of dripping, they were oozing water.
The whole environment said low expectations. These children, we do not expect much from them, and we're not going to give them very much. I stormed up the stairs and stormed into the principal's office, and announced that I was probably going to be one of his new parents, and that I found that classroom totally inaccessible, and I said -- not just for my son, but for the other boys and girls in that room, and he said words that are burned in my heart.
He said, they don't care. They don't care.
And it was -- that was the beginning -- one of the beginnings of my transformation from being a concerned mother to being an activist.
They don't care.
Of course they do, and of course that means we have to care triple. So that was my introduction to the Pittsburgh Public Schools.
23:19:36:12 - 23:23:34:07
Lisa: Ginny, it wasn't only schools I think that you found inaccessible to Peter and other children and adults with disabilities. I believe your congregation was also maybe not entirely accessible as well, and I wondered if you could tell us about that.
Ginny: Well Lisa, that's an even worse story, because I'm a woman of faith, and we're Christians, and so my husband and I and John and David would go to church every Sunday, and we got a babysitter for Peter. The church hadn't said get a babysitter for Peter, I just never occurred to me that the church would welcome him, and I of course am not very proud of that. But I think again, anybody seeing this interview may understand that certainly in the 1960s, and sometimes now, congregations do not say to parents, where's that wonderful son of yours Peter? People knew I had Peter as one of my sons, because they would see me taking walks with him, or they would see me in the market. So that was wrong on my part.
When our fourth son Bill was born in 1966, a woman said to me, maybe two months after Bill was born, how's that new baby of yours? We have new mattresses in the nursery, the church nursery, and we are hoping you're going to bring Bill to the nursery when you all come to church. And I thought, oh my, the church has skipped over my son Peter. They even knew the baby's new name, Bill. The church has skipped over Peter. And so that then was in a way the birth of my interest in religion and disability. I met with a pastor, I met with the Director of Education, Christian education, and very soon after that, they had found a special education teacher and designated a classroom for Peter and for the other children we expected to recruit to that class.
So it turned out to not be the church's fault, it was totally my fault, and we had put out advertisements in the church bulletin and in the local paper that children were more than welcome of all faiths, welcomed into this class, and I remembered that first Sunday when we brought Peter to that class, and Dick and I were sitting in church, and I snuck away in the second hymn to see how many children had actually arrived. And guess what, Lisa?
Peter was the only child there, and it was just a setback to me, because I thought by telling mothers and fathers that this would be available, they would come automatically. And I realize now that families, when they've had difficulties, when they've had a hard time in school, with other circumstances, they don't just come quickly. They need to know and feel totally comfortable that in fact this church long-term was going to journey with them. They wouldn't just come because it was an ad in the newspaper.
So we then recruited some children from the Children's Institute who were residential children and were children of faith, and so we did have a wonderful class then. But that was the beginning of my interest in the intersection of religion and disability.
23:23:34:10 - 23:24:37:04
Lisa: But you said something that I find very interesting, Ginny, which is the church -- people weren't sure that the church would make a journey with them in supporting their children, and I wonder if you could extend that comment to the community at large. I mean, were communities at that time willing to make journeys with parents?
Ginny: I loved Peter so much and focused so much on him that I probably refused to admit that people were not accepting him. And I was running a big family, and so sometimes in the market there might be another son who was annoyed at me because they couldn't have a certain cereal.
So I don't remember people not welcoming Peter. No I don't. Our neighborhood did, and the places where we traveled did. We were blessed in that. No, we were very blessed.
23:24:38:00 - 23:26:54:08
Lisa: So you've talked about your experience with the public schools as sort of being maybe the birth of your advocacy, or at least the point where you transitioned from a person advocating for your child to advocating for the sons and daughters of other people.
Ginny: And I have to say, it's interesting because we kept Peter in a self-contained class, although the park decision allowed us in '72 to have a more mainstream educational opportunity.
By that time, the Pittsburgh Public Schools had created a very good center called Conroy School, and it was what we then called trainable mentally retarded, offering those terms not being used anymore.
It was very good and forward-looking place where I learned a lot, and felt Peter got a very good education. And Lisa, I think you'll like this story.
When Pete was 15, they had a very good transportation program. Peter had been picked up at our door by a school bus, a small mini bus, and Mike Laws came to me and said, you know Ginny, Peter is ready to take the public bus, which would be a Port Authority bus in Pittsburgh. And I remember saying, Mike, you've asked me to talk to other mothers at Conroy about their son's or daughter's readiness to travel in the mainstream, but not Peter. So it's always -- when it's your own child, you think I can't possibly do it, and Peter took six months, but Peter learned to take the Port Authority bus to downtown Pittsburgh, and then a second bus to Conroy school.
So at age 15, he was traveling in the mainstream, and this is a band with a number of limitations, cognitive and physical limitations. So I just credit the Pittsburgh Public Schools at that time for that program.
About Ginny Thornburgh
Born: 1940, Hastings on Hudson, New York
Director of Interfaith Initiatives, American Association on People with Disabilities
ADA, Arc, Faith, Governor, Parents, Pennhurst, Polk Center