Wednesday, September 19, 2012

I Am Spartacus! You Might Be Spartacus, Too

So the Judge Rotenberg Center has been in the news again, this time because of an article in New York magazine about Andre McCollins, a young man from Brooklyn who had been sent there in 2001, when he was sixteen. His mother had sent him there because she thought it looked like a pleasant place, with dedicated and competent staff, where he might learn to control the rage attacks he sometimes had. 

Here's the part of the New York article where she talks about what motivated her to enroll him there; it very much gives the impression she didn't know how brutal the disciplinary regime was going to be:
She called the Board of Education for help finding a new school, and an employee told her about the Rotenberg Center. Stepping inside for the first time, Cheryl [McCollins] was dazzled by the décor. There was nothing institutional about this place; the carpet felt five inches thick. "I thought the place was beautiful," she recalls. "I thought these people really took pride in what they did." She loved that residents lived in lavishly decorated houses -- not dorms. The boys wore button-down shirts and dress pants. And there were surveillance cameras everywhere; she couldn't imagine a better way to ensure that Andre wouldn't be victimized again. 
School officials told her about their program and explained how the electric-shock device worked. The staffers showed her a video, too, of other students who'd been hooked up to the GED ["Graduated Electronic Decelerator," the name for the shock device] and appeared to have been completely transformed by it. "I was so excited," she says. "I was like, 'He's going to be cured? This can really stop all those behaviors, the aggression? And he won't break up my furniture, he won't fight?' 'Yes, this device does it.' I was like, 'Wow! You're kidding! Why didn't anyone tell me about this before?'"  
Twenty months into his stay there, Andre McCollins was strapped down and shocked repeatedly for a period of seven hours. The way punishment at the JRC works, they have a list of "behaviors" targeted for each person. Whenever the person does something on the list, they get a shock. Andre's list apparently included such things as screaming and tensing up his entire body, which he did throughout his seven-hour ordeal.

I have to say now that I really, really identify with Andre, even more than I normally identify with the victim in such cases of abuse of disabled children or dependent adults. Andre and I share several things: we're the same age, both born in the year 1984 (poor, poor Andre, he has seen the inside of Room 101), both diagnosed with a pervasive developmental disorder in early childhood. 

Most importantly, we share a pattern of behavior.

The "full-body tense-up."

Obviously, I'm not Andre and I can't tell you what's going through his head when he tenses up his entire body, but I can tell you what it's like when I do it. 

First, some background: though I can speak fluently, I can really only do it when I'm not doing anything else. If I'm intent on something, I won't answer you if you speak to me. I probably won't even acknowledge you until a few minutes later, or until I can tear myself away from whatever it is I'm doing. Especially if I'm doing something mentally taxing, especially something nonverbal and mentally taxing, like math, I may need to wait a few beats to remember how to speak: what the words are, how to put them together in ways that make sense. 

I don't have to be doing hard or creative work for this problem to arise: physical pain and emotional stress are also mentally taxing, and also effectively put words out of my reach for a while. 

As such, my primary response to fear or pain has never been to vocalize. Most of the time it just doesn't occur to me. I react with my body instead, stiffening my posture, recoiling back and tensing every muscle simultaneously. (Sometimes when I'm in pain I also make a hissing noise, but not always). This is what I do whenever anyone touches me. I have reacted that way to touch since I was a baby: my mom says I used to stiffen up in her arms when she tried to hold me. 

It is, you might imagine, a completely involuntary reflex.

So, when I got to this part of the article (TRIGGER WARNING) ---
Usually after Andre got a shock and was restrained, he'd calm down, but on this day he only got more agitated. The more upset he became, the more he tensed up his body -- and the more he tensed up, the more shocks he received. Between 10 a.m. and about 11 a.m., the workers shocked him fourteen times. Each press of the button delivered a loud, high-pitched alarm -- informing employees the shock had been delivered -- while Andre's cries echoed down the hall.
"No, don't do that!"
"I'm sorry. Sorry. Sorry." 
"I won't do it again."
"No, please."
"Stop! Stop! For real!"
"Help me! Help! Help!"
Employees came and went throughout the morning and into the afternoon. They attached two more electrodes, so Andre had five total: on both arms, both legs, and his torso. Following the usual protocol, they tested the batteries on his shock device; rotated his electrodes so they wouldn't leave marks on his skin; offered him water. They studied his "behavior recording sheet" to figure out exactly what behaviors they were supposed to punish. And they documented each shock with the reason it was given: "Scream" or "Tense Up." 
Hour after hour went by and nobody knelt down next to Andre to try to calm him. Attention was considered a reward -- and a student who's exhibiting "targeted behaviors" is not supposed to receive any. When the staffers did speak to Andre, they were required to follow a script, like a case manager did at 1:25 p.m., when she pressed the button for shock eighteen, then said: "Andre, no full-body tense-ups." If any of the workers thought these shocks were excessive, they kept it to themselves. They all knew that if they didn't shock a student when they were supposed to, the phone in the classroom would ring and there would be a monitor on the line ordering them to press the button. 
--- I felt horror, not only at what they were doing to him, but also because they escalated it whenever he physically reacted to the pain. When you realize that, and let it sink all the way in, you see how easily they could have killed him that day. The perverse logic --- tensing up his body (showing fear and pain) is bad, so we will shock him (make him feel fear and pain) whenever he does it until he stops --- reminds you of other no-win scenarios, like the witch trials where they would determine an accused witch's innocence based on whether she sinks or floats in water. If she floats, she's guilty, and her accusers have grounds to kill her; if she sinks, she was innocent, but she's dead anyway.

By now, you're probably asking, "Why is this woman* going on at such lengths about her feelings, and her weird stiffening-up reflex? What does any of this have to do with Andre McCollins?" 

That's a fair question --- I'm not Andre, and I don't have any better idea than you do what he was thinking or feeling on that day. But because of all the things I do happen to have in common with him, I get a strong sense of "there but for the grace of God random chance go I" from his story.

I also believe there's a very strong tendency for non-disabled people to "other" people like Andre McCollins --- they might be horrified at what happened to him, but at the same time they know how impossible kids like him can be. They're aggressive. Violent. They can't be reasoned with. They're a "they," never a "we." People might think they ought to be treated more gently than they are at the JRC, but they have to be put somewhere, controlled somehow, ... don't they?

That's why I have made this post so personal. I'm not Andre, but I share some things with him, and more than anything I think people need to see articles from people who are like Andre in various ways saying, unambiguously, "THIS IS NOT OKAY. IT WOULD NOT BE OKAY IF YOU DID IT TO ME, AND IT IS NOT OKAY THAT YOU HAVE DONE IT TO HIM." If I come across anything Andre himself has written, I will link to it.

*Bitch, to the uncharitable. Cunt, to the vulgar. Perhaps "mewling quim," if you are Loki.

4 comments:

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glassblowerscat said...

This sounds utterly terrible. Is this really a hope or goal of treating disabled kids--that we can just "hurt" them into behaving in a socially-acceptable way?

It's not really supposed to happen, but the group home I worked in occasionally had boys placed with us who had low IQs and resulting behavioral problems. We always managed to make at least some progress on their behavior without using physical punishment of any kind, which is fortunately against regulations for our kind of facility in Indiana.

In any case, programs that focus on behavior to the exclusion of beliefs, feelings, and thoughts (the three components that influence behavior) are less than ideal and lead to greater recidivism rates, at least among the non-disabled population.

glassblowerscat said...

This sounds utterly terrible. Is this really a hope or goal of treating disabled kids--that we can just "hurt" them into behaving in a socially-acceptable way?

It's not really supposed to happen, but the group home I worked in occasionally had boys placed with us who had low IQs and resulting behavioral problems. We always managed to make at least some progress on their behavior without using physical punishment of any kind, which is fortunately against regulations for our kind of facility in Indiana.

In any case, programs that focus on behavior to the exclusion of beliefs, feelings, and thoughts (the three components that influence behavior) are less than ideal and lead to greater recidivism rates, at least among the non-disabled population.

Lindsay said...

Hi, glassblowerscat - the JRC is probably one of the worst, if not THE worst, institution in the country. It really is a mystery to me why it hasn't been shut down long ago.

(I do think that the power dynamics at work there, and the tendency to objectify the kids who are sent there, ARE problems with institutional culture in general --- another autistic woman, Amanda Forest Vivian, has worked with developmentally disabled people in various settings, including a group home, and she felt really conflicted about it because of the way the institutions are set up. I'm going to link some of her posts that I think are especially on point here.)

So, I guess what I'm saying is, the JRC is an extreme example of something that troubles me about the culture of institutions in general. It seems to be there, like an undertow, pulling even the kindest, most empathetic, most conscientious people out to sea. Maybe all it is is power: having near-absolute power over another person's life, and NOT having unlimited time, energy, and knowledge to make sure you're always doing what's best for the person or what the person wants.

Anyway, I'm always glad to hear from people in support professions who do try their best to treat the people in their care like people.