The essence of what I was taught was this: we've come a long way. Along that way we've learned about ethics, and the importance of protecting people who participate in research projects. In other words, we've gotten better at caring about people. I thought psychologists were so smart--so ethical. The world back then was dark, unethical, and filled with horrors. The world now was filled with compassion, thoughtfulness, and ethical behaviors.
At the same time I was learning this, Forest Haven Developmental Center (sometimes called Fuller State School and Hospital or Patuxent Mental Hospital) was shut down by the Federal Government after the center was successfully sued. This was not the first lawsuit: one was filed in 1978 about poor conditions and then another in the 1980s. I was so wrong about the world being filled with compassion, thoughtfulness, and ethical behaviors.
Who was in Forest Haven? Elroy was one resident. He grew up in Forrest Haven and was given a home in the community when the center was shut down. Here is what the Washington Post wrote about him in 1999 in an expose about the still damaged system for caring with people who have developmental disabilities:
Elroy lives here. Tiny, half-blind, mentally retarded, 39-year-old Elroy. To find him, go past the counselor flirting on the phone. Past the broken chairs, the roach-dappled kitchen and the housemates whose neglect in this group home has been chronicled for a decade in the files of city agencies. Head upstairs to Elroy's single bed.
"You're in good hands," reads the Allstate Insurance poster tacked above his mattress -- the mattress where the sexual predator would catch him sleeping. Catch him easily: The door between their rooms had fallen from its hinges. Catch him relentlessly -- so relentlessly that Elroy tried to commit suicide by running blindly into a busy Southeast Washington street.
These days, reconciled to living, Elroy has fashioned ways to cope. He keeps private amulets against a misery he doesn't fully grasp. There's the leatherette Bible he can't read; the Norman Rockwell calendar of family scenes he hasn't known.
And there's his strategy of groping his way down to the bare-bulbed basement again and again to wash the sheets from his violated bed, as if Tide could cleanse defilement. "God is a friend of mine," he says. But absent divine intervention, "you just gotta do what they say." Just got to add soap powder, and more soap powder, turn the dial to hot. "Gotta not let the worries pluck your nerves."
Here are a few images of what is left of this former state-of-the-art facility for the treatment of children and adolescents with developmental disabilities (and some children who were just discarded and thrown away by their parents for no apparent reason).
I'd like to say that we've learned a lot since 1991 when this facility was shut down. In some ways we have. In the mid-1990s I spent some time working in upstate New York in a supervised apartment program for people with developmental disabilities that was exemplary. I learned some powerful lessons--lessons that have deeply influenced my work. Those lessons involve deeply appreciating the right of everyone--regardless of ability or disability--to make an informed choice and have the dignity of risk.
Sadly, we have a lot left to learn. One need only to look here in Massachusetts at the Judge Rotenberg Center for evidence of the work that needs to be done. In 2006 the Boston Globe released a report that detailed:
- JRC employs a general use of Level III aversive behavioral interventions (electric shock devices, restraint chairs) to students with a broad range of disabilities, many without a clear history of self-injurious behaviors.
- JRC employs a general use of Level III aversive behavioral interventions to students for behaviors that are not aggressive, health dangerous or destructive, such as nagging, swearing and failing to maintain a neat appearance.
- The Contingent Food Program (withholding food as a behavioral conditioning tool) and Specialized Food Program may impose unnecessary risks affecting the normal growth and development and overall nutritional/health status of students subjected to this aversive behavior intervention
In The Noonday Demon, Andrew Solomon writes "Most demons--most forms of anguish--rely on the cover of night; to see them clearly is to defeat them". Mistreatment is one demon that we can scatter with sunlight. We have a lot more to learn about how to care for those who are most vulnerable. We need to do better. We need to let the sunlight in.