Of course he does not remember. He was only 13 months old when the lawsuit was filed; but it has never been a secret. He knows that his older brother, who has multiple and severe developmental disabilities, lived for a while in a large state institution, and he knows that his Dad and I joined nine other parents and filed a suit in federal court that challenged the state of Oklahoma to develop a system of community services to replace institutional care.
Federal court—that is how our recent discussion got started. My son Ryan is now a high school student studying United States government. I was helping him review for a test over the chapter on the judiciary system when he suddenly asked, “You and Dad filed suit in federal court didn't you? Tell me about it.”
What ensued was a lesson in government. and, I quickly realized, a lesson in perseverance. I drew upon what Ryan had studied that semester, and we discussed the Supreme Court decision Brown v. Board of Education of Topeka. I explained how this decision, which ended school desegregation, paved the way for his brother, Doug, to go to school. Legislation extending the right to attend school to children with disabilities was passed in 1975, the year before Doug entered first grade. This was crucial for Doug, but also for us as parents. We finally had some help in meeting his complex needs and we met other parents.
I reminded Ryan that he studied the civil rights movement during the semester. We talked about discrimination, and I explained how the civil rights movement spawned the disability rights movement. As our parent group attended training sessions on advocacy and met adults with disabilities involved in advocacy efforts, we learned that we could improve the existing service delivery system and work to create additional services. These skills served us well until our children began to enter adolescence.
Then we needed more help. Their physical size, fragile health, and behavior problems exacerbated the stress we were experiencing. We had school programs, but little else—babysitting, respite care, and summer camps were hazy dreams. Marriages suffered, siblings suffered. We asked for services to support our families and for services to help our sons and daughters as they entered adulthood. We were told that we could apply for Hissom, the state institution in our area. We said no.
We were not dismayed. We had a track record of successful advocacy; this was just a new challenge. We wrote letters, we met with administrators, we met with legislators, we consulted with advocates from other states. Still, one by one our sons and daughters entered Hissom. There were no other choices.
We wrote more letters; we had more meetings. We were Everready bunnies. We kept going and going with individual tasks, coming together once a week for mutual support and to compare progress. We had a new name, Homeward Bound, because that is where we wanted our sons and daughters to be, at home with us or living in their own homes in the community. We believed we would succeed in persuading the state to develop a system of community-based services. We did not.
Ryan's next lesson took us back to the beginning of that semester and the beginning of our nation. What we wanted for our sons and daughters was what the Declaration of Independence promises: life, liberty, and the pursuit of happiness. We filed suit in federal court. We did not want this fight. We felt like David taking on Goliath, but there was nothing left to lose.
In fact, we won. The doors of Hissom closed forever in 1994, and a broad system of community services was established.
Finally I said, “Ryan, we will talk about this tomorrow. You have learned quite a lot tonight about our government and how it can work to protect the least powerful members of our society, but you have not yet learned what you need to know to do well on your test.”
As promised, the next evening we talked again. This time I had visual aids. I showed him a special education textbook that cited our case as a landmark decision in disability rights. I also have the July 4, 1988, issue of Newsweek in which the parents of Homeward Bound were named American Heroes.
He asked me what meant the most to me about this achievement. Three things stand out. The first is that Doug is doing very, very well living in the community. His daily life is the prize for all our efforts. Second, by helping Doug we also helped others. Former Hissom residents simply said “Thank you for my life,” and parents of former Hissom residents said “I had no idea how much better life could be.” Finally, just this week, the mother of a young son with severe disabilities shared with me that her family had just been approved to receive support services—the kind of services designed to prevent institutionalization.
Ryan concluded our session by saying, “You and Dad and your friends did a really great thing.” Hey, I guess we did.
Author: Judy O. Berry, Department of Psychology, The University of Tulsa, 600 S. College, Tulsa, OK 74104. email@example.com