Strengths and Challenges, inclusion and Segregation
In the absence of federal legislation about inclusive education and meaningful employment, Ann talks about the many efforts made to be free of limitations, restrictions, and segregation that prevailed in delivery systems during Jay’s lifetime.
In 1974, the school would not take him, because they said – because he had an intellectual disability. That was before the federal legislation that gives all children the right to an education. Not having the school bus stop at our house, which was very painful to see every child in the neighborhood getting on the school bus.
We worked with the superintendent of schools, and he told us that if we would write a grant and get money for a teacher – and when I say "we," my husband and myself – if we could find six or seven other children with similar significant support needs, and if we could recommend a teacher, then he would do us "the favor" of having the custodian clean out the storage room in the administration building – space in the administration building without any other children in the building. We started and we did it and eventually, that class moved to a typical elementary school. And eventually, the students in that class began to attend at least part of the school day, general education.
But the most devastating – when you said, you know, heartbreak – I can still remember the feelings. When he graduated from high school, the only adult program that was available was a very segregated, sheltered workshop, and Jay hated it. He, Jay, experienced an intellectual disability but also autism and a bipolar disorder, and so he had very complicated support needs. He knew the difference in dignity and no dignity, and in this workshop and group home, where there was no dignity, he very much rebelled.
Before this happened, his younger sister, who at that time was about in third or fourth grade, went to see him, to visit him in the group home after he had been there a week or so, and she came home and was very angry. She said, "Mom, you wouldn't want to live there. I wouldn't want to live there. Why is it okay for Jay to live there?"
He chose the one person that was in the group home whose family had the power to get Jay kicked out faster than anybody else could have. He started hitting and choking the son of a state legislator, and that was a very short ticket for Jay to be expelled from the only program. But when we were meeting with the director, and he was telling my husband and me that Jay was no longer able to come to the program, and we were eager to tell him we were withdrawing Jay.
We wanted to withdraw Jay before he expelled Jay. We told him that we were going to start a small nonprofit and that we were going to offer supported living and supported work and that Jay would have an opportunity for a life with dignity. And he said, "What are you going to do when you fail?" But I was really speechless, because we didn't know what we were gonna do. And we knew what he was saying is, he was the only program in town; we would come back and beg him to let Jay back in.
"What are you gonna do when you fail? You're gonna come back and ask for me to get you back into this program." And my husband said, "We're not going to fail. We're going to succeed. And that's not a threat. It's a promise." And then we left.
We were free from shackles of the system, but we didn't know how to put together what was going to be needed for Jay to flourish. That started a fire of building inclusive communities for not just children to go to school, but for adults to live and work and recreate and have a wonderful life in the community. And I'm so thankful that that came about in Jay's life.