Remembering Willowbrook

By Stephanie Holland

A recent article, Forgetting not an option: Horrors at Willowbrook State School remembered at annual CSI lecture caught my eye for two reasons:

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 first heard the name Willobrook as a graduate student in the Disability Studies program at Syracuse University. During a course taught by Steven J. Taylor, we looked at disability in different media. It was a tremendous course, taught by a very skilled professor, researcher, and community advocate. Thinking back on it, I remember my own poor performance as a student. It was one of my worst. Watching this video makes the emotional and physical reactions I had to the content come rushing back. I’m completely aware of WHY I couldn’t bring my A game to this course. (Trigger warning: This video is painful to watch for anyone, but parents of children with an intellectual disability will find it almost unbearable.)

This three minute clip of scenes is just the tip of the iceberg when it comes to what went on at Willowbrook.
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.

I think that at the state institution for the mentally retarded, and I think that particularly at Willowbrook, we have a situation that borders on a snake pit,

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

In some ways, Dan Barry can be compared to Geraldo Rivera. The New York Times author brought similar atrocities to the attention of the public in his recent expose. What Geraldo did to expose institutionalization gone wrong, Barry has done for sheltered workshops.

Again, I’m left with more questions than answers. Did NO ONE realize what was going on here? Where were the families for all this time? Did people really think this was “normal” and okay?

Now What?

The theme of this year’s lecture was “Forgetting is Not an Option: Tragedies and Triumphs of American Deinstitutionalization.”

In a chapter called “Institutions are Dying But are Not Dead Yet,” (Deinstitutionalization and People with Intellectual Disabilities: In and Out of Institutions, 2005) Dr. Taylor talks about how the continuum of services is out of date and fallen out of favor.

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.

This chapter is well written and gives compelling evidence of a system that started out being a road map to move away from segregation – but has turned into an excuse for continued exclusion.

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.