- It brought back memories from when I first heard about the beginnings of deinstitutionalization, and
- I've recently been writing about how I see the similarities between deinstitutionalization and the affect that the Rhode Island decision will have on sheltered workshops.
I feel physically ill
I remember feeling completely and utterly depressed during the length of this course. The readings were bad enough, but to actually see the images of children and adults in this situation was immobilizing for me. Dr. Taylor even added personal accounts which made it more REAL. Even now I’m nauseous and my head hurts. I could not then, and still can't, understand how this happens.
One of the questions that took over my mind and blocked out my ability to be an intelligent student was how parents and family members could allow this to take place? I have no doubt that professionals convinced naive parents that institutionalization was in their child and family’s best interest. I’ve experienced that kind of pressure from well-meaning professionals first hand and know what it’s like. What I couldn’t wrap my head around was why it was allowed to continue. Did families NEVER visit their children once they were placed there? If they did, were they led to believe that the patients' behavior was a result of the disability rather than the inhuman conditions in which they were forced to live? What about the people that worked there? Several have said since that it was awful. Were they all so afraid of losing their jobs that they couldn’t speak out?
Seeing that Robert Kennedy condemned the place and still nothing was done for years just makes it even more incomprehensible to me.
and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. Both need a tremendous overhauling. I'm not saying that those who are the attendants there, or who run the institutions, are at fault – I think all of us are at fault and I think it's just long overdue that something be done about it.
The 'Boys' In The Bunkhouse
The theme of this year's lecture was "Forgetting is Not an Option: Tragedies and Triumphs of American Deinstitutionalization."
When viewed from this perspective, it follows that people with severe disabilities will require the most restrictive and segregated settings. Herein lies the flaw: segregation and integration on the one hand, and intensity of services on the other, are separate dimensions. Any health-related, educational or habilitative service that can theoretically be provided in a segregated setting can be provided in an integrated setting.
My problem, as always, is how to go from the theoretical imperative to the reality of life as a parent.
Yes, we agree that we want things to change. We want our children to be accepted in the community and have the best life possible.
We also want them to get the help they need and to be safe. We don't want to think about the possibility that our children could have ended up at Willowbrook or Henry's Turkey Service. (There but for the Grace of God, go I)
The undeniable truth is - we're not there yet as a society - or these horrendous examples of abuse wouldn't continue to exist.
These and other horror stories from segregation can and should move us to action. The problem remains: How? And should people have their lives and routines abruptly disrupted in the name of progress for all? Is that the only way forward or are their better ways to move toward the ideal?
I don't know the answers but I will keep asking the questions.