Wednesday, February 2, 2011

On the Inside

Stanley Milgram
As many do, I thought I new everything in college. It was 1991 and I was in the middle of my undergraduate education. Among other things, I was learning about the ethics of psychology. I remember hearing stories of stuff way back when--Stanley Milgram and his experiments about power and obedience, Phillip Zimbardo's Stanford Prison experiment, and John Watson's study with little Albert.

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
To my knowledge, the JRC hasn't changed. Regardless of whether their techniques work--or don't--are these ways in which we want to treat another human being? Are these ways in which we want to offer care to the hurt, lost, and forgotten?

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.


  1. I am going to comment here, a painful comment for me. My son, was born in 1975. When he entered school in 1980, there were problems. The school had a problem with everything it seemed that Bobby did. From walking home and throwing snowballs at other kids and houses to constantly disrupting (they said) the class by raising his hand all the time. They kept flunking him, cause he couldnt color within the lines. That was kindergarten, and only the beginning of my problems for him. As he kept falling behind, they told me the his 'behavior has got to be modified before learning can take place' and those words just echo through me. They eventually put him in a behavior type setting school with all kids that were on drugs, in gangs, etc.
    By now, I had him tested and he had what is now recognized as ADHD. We started him on meds, but Bobby was already lost to the drug world from being around his friends in the behavior school. I fought to get him back into the regular school system with a lawyer and yes, he got into a regular high school. That did not last long, for they 'threw him out'. "We have 30 kids in this class and dont have time for the one who doesnt belong here'. That is what I heard. They expelled him from High School, he fell prey to the streets. There was no one, no place for him. I had put him in several rehabs, hospitals, rehab, but his soul was lost. I hated the school system for doing this to him or worst I hated my self for letting this happen to him. He died of a drug overdose in 2005. God rest his soul. He is now at peace. Had the ADHD been recognized and treated much earlier than it was, maybe just maybe he could of had a chance. God bless you son for all you went through.

  2. Thanks, Mary, for commenting and sharing such a painful memory. I'm so deeply sorry for your loss--and think that the both of you did the best you could with the tools you had on hand.

  3. The point I was trying to share with you was the point that no one cares about the the people in society that 'are different'. For whatever reason, they just dont care. Many of those early institutions were just a dumping ground for these poor souls. I I am sure, if we cared about them and found what each and every problem was, there would be a fix, and they would or could be functioning human beings. As for my son, after I hired a lawyer to fight the school system to get him back to regular school, the lawyer obtained all his school records. We found that way back in first grade, the school teacher who tested him said and reported he had ADHD. Yet, no one, no one, told me or did they try to help him. You know why? Because they did not recognize that, they couldnt deal with that. It was only after it was too late that I had him tested and was told by a psychiatrist that he was ADHD years later. Why did they hide this from me? Why couldnt they deal with this? Cause they didnt have time for that one child who was different. Just like the mental institutions who got all the people who were different, because society didnt have time for them. So true, and my son and I lived it. My hope is now, now that we know so much more, that we care so much more. That we care enough not to let this happen to another child or adult.