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Jun

Disability simulations are not the only kind that don’t work.

Posted by ballastexistenz  Published in Abuse, Analogies, Aversives, Behavior Mod, Blogs, Degradation, Disability, Ethics, Institutions, JRC, Kidnapping, Medicalization, Power, Solitary Confinement, Torture

“I can understand how you feel,” said the staff person as she was busy strapping me to a bed, and I was busy struggling. “During our trainings, we had to get strapped down for five minutes. It was really scary.” I think this was intended to calm me down. Needless to say it didn’t.

Disability simulations have long been viewed by the disability community as inaccurate and damaging, promoting horrible views of disability that don’t match actually being disabled.  I would argue that a reverse effect is true with disability-torture simulations:  People get an idea that it’s much better than it really is.  The only way someone could understand how that would feel, would be this:

Without any warning, to have someone break into their home and find them (or find them taking a walk, or pull over their car, or get them at work, etc), grab them, subdue any struggling, and strap them to a board, where they are then put into a van. The van drives to a place with many, many locks on the doors. They are “admitted” and not given a chance to speak for themselves, and when they do speak, whatever they say is treated as nonsense or meaningless. They are told what to do at all hours of the day, their every movement, even potentially eye movement, is pathologized, and they are made to witness other bewildered people like them being tortured, especially if the other people fight back or stop responding to their environment the way their captors want them to. Punish all possible responses to the environment, and punish responses to punishment.

Either at random during the course of the day, or as soon as they do something that appears “non-compliant,” have ten people jump on top of them, pin them to the ground, and then carry them into a little room with straps all over the bed, and then strap them down. Tell them they will not get out of the little room until they finish struggling and crying out. Tell them they may never get out of the place at all until they show signs of believing that who they are is sick and that in order to get well they must become or at least strongly emulate something they will never be, and above all stop reacting to confinement as confinement. If they begin fighting for breath, tell them that if they can struggle that much, they can breathe just fine. Tell them they’ll be out in certain periods of time, and then extend those periods arbitrarily. Tell them “You’ll be out in ten minutes,” and then wait four hours. If they ask why it’s taken four hours, tell them “Oh, you’re not quiet, that’ll be another ten minutes.” Repeat for days. Contradict everything they see as reality, get them convinced that nothing they perceive is real is actually real. Shame them for their ordinary acts of defiance in these circumstances, tell them that it must just be for attention because obviously resisting is pointless.

That is a simulation that would truly mimic the effects of institutionalization, and give the entire context in which restraint is experienced. Simply strapping someone to a bed in a controlled exercise entirely among staff is not the same and will never be the same. Of course, the simulation I describe above would be considered unethical. Which makes me really wonder why it becomes “ethical” when it’s done to people who aren’t staff.

On Kevin Leitch’s blog, a staff person at the Judge Rotenberg Center is talking about how they’ve tried the skin shock device on themselves. This apparently is a point in favor of the ethics of using it.

However, that’s not a real simulation either. Here’s the real simulation:

Go through the entire above scenario, preferably several times. If the person survives, transfer them to a new location. In that location, have someone strap a device to their bodies, above any protests of theirs if necessary. Any time they do some particular action, zap them with said device. If they don’t get it, zap them harder. Periodically, tie them down and tell them they’ll be zapped several times within the next hour, but they won’t know when. Let them know that they’ll be there, and be getting zapped, at least until they stop whatever the undesired behaviors are. Be sure to be fairly arbitrary, at times, about which behaviors are prohibited and zap-worthy. Do not permit them to take the device off. For extra bonus points, talk to them in a foreign language that they have no knowledge of any languages even related to it.

Until someone goes through that simulation, especially without even being told that it’s only a simulation, I’m not going to trust a word they say about knowing what it’s like to receive strong aversives. It’s like saying that you understand the sleep deprivation involved in formal torture situations because you’ve been sleep-deprived while studying for tests. Just… no. Not even close.

4 comments

9

May

Extreme measures, and then some.

Posted by ballastexistenz  Published in Abuse, Aversives, Behavior Mod, Blogs, Death, Degradation, Disability, Institutions, Integration, JRC, Medicalization, Murder, Neglect, Outside Perceptions, Politics, Power, Prejudice, Segregation, Services, Solitary Confinement, Special ed, Torture

an institution, looking somewhat like a low-rise office building

Mike Stanton has written a blog entry about the latest atrocities at the Judge Rotenberg Center.

Meanwhile, I’m wondering, how do we stop things like this in general, not just at the JRC? (None of the pictures on this page, if you are wondering, are of the JRC or any other institution that is named on this page.)

The things that happen at the Judge Rotenberg Center are medieval, to put it mildly. But one thing they are not is unique. The torture of disabled children and adults is commonplace. Judge Rotenberg Center is a place that flaunts what it does, which is why it receives so much publicity. Not everywhere writes it down, not everywhere tries to justify it, lots of places just do things like this.

an institution, looking somewhat like a prison

Things I have, personally, either experienced or been direct witness to, in places that showed no outward sign (to people who weren’t intimately involved in it) of being anything like this at all:

  • Children being forced to eat their own vomit.
  • Preferred method of transportation for autistic people being “grab them by the arm and yank hard, restrain if they resist”.
  • Deaths of disabled people within the facility dismissed as unimportant and “they were better off that way”.
  • Repeated, hard hitting that only let up when you did what they wanted.
  • an institution, looking like a nondescript wooden building

  • Drugging you to the point of near unconsciousness and then screaming in your ear or blasting loud music or tapes in your ears in order to prevent you from falling asleep.
  • Basketholds and other similar dangerous techniques.
  • Mechanical restraints.
  • Using mechanical restraints in ways that cut off circulation, caused near-dislocation of joints, or caused excruciating pain.
  • Taking advantage of deadly situations in order to “fail to rescue” people if they did not become compliant, in ways where nobody would be held responsible for any death that did occur.
  • Punishment for purely physical things such as movement disorders, seizures, constipation, reflux, and atypical perception.
  • an institution, looking like an office building or an inn or something

  • Using struggle or reaction to extreme provocation as excuse for abuse.
  • Failing to give necessary and routine medical treatment.
  • Withholding of food for punishment purposes.
  • Restraining people in ways that suffocate and then laughing about it.

That is just off the top of my head. I could probably fill pages with exact descriptions.

And that is only the most physical aspects of captivity and torture, the most easily described. I would rather experience all of those combined, again, than experience some of the other things that went on.

an institution, looking like a tall office building

  • Pathologizing every action or inaction you could possibly take including thoughts and emotions.
  • Standing over you. While you are tied down and have no way of moving much of your body at all, even to turn your head. And then putting their faces right up next to yours and making the most derisive and degrading comments they can come up with. And then taunting you if you try to look through them or look away.
  • Breaking up any two or more people who showed any remote amount of affection or friendship with each other overtly. In fact, pathologizing friendship and human connection and publicly mocking people for having friends or lovers.
  • Making people beg like dogs for things like clean socks, coffee, water, or cigarettes.
  • Standing by and watching and doing nothing (or, for that matter, laughing) while sexual assault occurs.
  • Treating all of the standard, documented reactions to confinement (sitting doing nothing, trying to break all the rules, attacking your captors, etc) as if they are stupid, melodramatic, attention-seeking, naughty, and childish. In fact, taking anything suggesting the fact that you know you are a captive, as stupid, melodramatic, attention-seeking, naughty, and childish.
  • an institution, looking like a schoolyard

  • Treating you as if you are something disgusting and not really a person to begin with. This is hard to describe. It’s like people look at you as if you’re a piece of moldy vomit only with more contempt involved. Like you are something that is embarrassing to even be in the presence of, kind of gross, worthless, and definitely, definitely not a person. (This attitude being pervasive.)
  • The air in those places. It’s thick with all kinds of nasty crap. It’s hard to describe though, unless you’ve been in there.
  • The attempts to convince you that you are someone else, who has different thoughts, feelings, and motivations than you have, and the punishment if you do not accept this.
  • The requirement of accepting several contradictory and wrong ideas, either in succession or all at once, as totally valid and real.
  • The use of deliberate confusion and disorientation to get you to think things you wouldn’t normally think.
  • an institution, looking like a large hospital

  • The constant threat of violence, or death, or “worse” kinds of incarceration, for things that for most people are normal things to do.
  • “Little things” like a fire plan where, in the event of a fire, all inmates are to go to the rooms furthest from the exits, lock the door, and stay there.
  • Being told or forced to do something, and then punished or humiliated for actually doing it.
  • Having people work their hardest to convince you that you need, really need, everything horrible that is happening to you, that you’d die without it, or other dire consequences, and having people work their hardest to warp your mind until you will defend everything they have done to you and even try to come back for more (at which point all this hell becomes your “choice”).

Again, the list could go on, and on, and on, that’s just off the top of my head.

“As compared to my experiences at Topeka State, Menninger’s was more destructive and painful through its more subtle yet undermining techniques. In the state hospital faced with a harsh reality you had to work hard physically and otherwise to keep up with it. Menninger’s on the other hand led to a total disintegration of personality and personal autonomy.”

Treatment aimed at restructuring the personality of unwilling subjects is rightfully viewed by them as torture.

—”Sarah”, quoted in On Our Own, by Judi Chamberlin, and then Chamberlin’s response.

an institution, looking like a very modern, pretty, and tall building

Sarah in that book spent nine months in a seclusion room at Topeka State. She was no stranger to brutality and torture. She understood, as most people who have not lived both do not, which environment was worse. Many people are unaware of this, and many people fight to create more places like Menninger’s, in the belief that it’s automatically better than places like Topeka State.

“That shouldn’t have happened.” Emphasis on that. They talk about regulations, oversight. I think of the glossy literature my parents read, the architecture they admired. They bragged about the place that “cared” for me. I think of the reality of that place, the powerlessness, the punishment. I cannot wish it on anyone.

—Cal Montgomery, Critic of the Dawn

I want the Judge Rotenberg Center gone, as much as anyone. But I don’t want to stop there. There’s another thing that a lot of people don’t understand, about places like this, that Laura Tisoncik sums up very well.

I’m really quite certain that there’s kind of a floor in human experience, where you can’t get much worse, you can’t get any worse. Because after a certain point, you just sort of turn off and walk through it like it’s a dream, and you can’t actually be hurt any worse than that. Yes, you can be physically damaged worse than that, but the basic core experience after you reach that particular point of hellish, remains pretty much standard.

— Laura Tisoncik, Conversation on Institutions

an institution, seen from above, with buildings situated around a courtyard

People can get very hung up on the details of these places. Aside from misjudging the relative badness of various places, they can get very focused on which kind of places have the most bizarre and nasty-sounding kinds of torture. They forget that past a certain point, getting more bizarre and nasty doesn’t change anything for the person experiencing it. That the experience of someone in a place with far less exotic forms of torture than the Judge Rotenberg Center, can be identical, in terms of badness, to the experience of someone at the Judge Rotenberg Center. There’s a certain point past which gradations of badness no longer exist. I’ve been to that point.

There was an iron cage, it was a one-man iron cage. And it was so small that you’d have a hard time sitting down in it. You’d have to have your knees up against your chest. And there was a person in there. And that was one of their punishments.

…

She described to me one time, which was exactly tarring somebody. They would take this black stuff and put it in their hair and on their bodies. It was just like being tarred and feathered, that’s stuff that I read about in medieval times. And she was telling me about this.

— from interviews in Lest We Forget: Spoken Histories by Partners for Community Living

If things from ‘medieval’ times could happen in the twentieth century, I wonder why so many people are resistant to believing that things that happened in the twentieth century still happen in the twenty-first. I have already lived through one period in which things that “did not happen anymore since the 1950s” were done to me, and now I am told that everything has changed since the 1990s. It keeps moving up, but things keep not changing.

My horrified friends saw the six sided wooden box (about five feet on the long edge, about eighteen inches on the end edges) opened to reveal an adolescent boy lying flat on a vinyl mat. His hands were strapped to his waist in leather wrist-to-waist restraints which were secured around the hips and with a strap between his legs. He was clad in a white long john set that was stitched together to allow no openings. His hands were wrapped in gauze and one hand was further strapped to a flat board that resembled a table tennis paddle. There was no light or objects inside the box.

The group home director described the various procedures which she indicated were necessary because of Job’s extreme self injury. In addition to the restraints, she had additional restraint procedures which were used when he was to be fed, which were per G-tube only. He had a wheelchair, but she indicated he didn’t like it, that the only place he liked to be was the box. He had long ago between withdrawn from school; she had worked with a local physician to have him withdrawn because she felt like he was extra susceptible to infections there and she needed to protect him from that. She had also petitioned the court successfully to have all of his teeth removed; this had been done one year before.

—Ruth Ryan, Real Eyes

an institution, looking like a ranch

The boy in that situation was successfully removed from that situation, and is now doing very well, but the same group home director continues to try to invent things that are not really wrong with him.

Things this extreme really happen. But as Laura Tisoncik pointed out, it’s important to note that, by the time you get to things like that, things are long since so bad they can’t feel any worse.

I used to spend a good deal of my time being totally immobilized and tortured. But if you removed all that, it wouldn’t have made anything I was experiencing good.

Things like this are wrong. But things much less lurid and exotic and terrifying, are just as wrong, just as damaging, and just as bad. Some things much less lurid and exotic and terrifying are actually worse, from the standpoint of the people they are happening to. I am not saying this to diminish the horror of these things, which I have experienced many of, and they are horrible. I am saying it because I worry that these things, and only these things, will be focused on and removed.

an institution, looking like a horse pasture

I have put a lot of pictures in this entry. All of them are pictures from institutions in which all the things I described and more have happened. I know because I’ve been at all of them. (So, by the way, tell me that my experiences are unique to a few bad apples in one particular place and I’m likely to laugh.)

Moreover, many things like this happen within the guise of “community programs” as well. Take away the building, leave the power structures intact, and all you have is a widely distributed institution, with the inmates isolated from each other.

The horrors of the Judge Rotenberg Center are not particularly unique to the Judge Rotenberg Center. The Judge Rotenberg Center is flagrant, many places using the same techniques are not. The Judge Rotenberg Center has impressively medieval-looking forms of torture, those are not the only kinds of torture that people are subjected to.

You can look at the final two pictures. Here I am in the last one, in a work program that did, yes, actually pay us. Does the place look much more beautiful than the rest of the institutions pictured? It is the worst of all of them. (It was so bad that I am still afraid to put in print, next to these pictures, that it was the worst.) None of them were good. This one was just the worst.

The first picture (on the whole page), the one that looks like an office building with palm trees, is of the place in which staff tried to kill me, by the way. It’s the same one as the later aerial photograph of the buildings arranged around a central courtyard. It’s now been converted to a nursing home. One kind of institution, into another, into another, is all that place has ever been.

No matter where you live, something like this is happening in your backyard, in your neighborhood. You may not even know some of the places you see are institutions, not all of them have signs. You will not likely see the brutality, and if you do, it will be explained. Explained as “these people have severe behaviors,” “severe this,” “severe that.” “Danger to self or others” (as if what is done to us isn’t even more dangerous than anything we could dream of doing). Explained as you don’t understand the medical reasons behind torture. Please, don’t buy that line of bullshit. Torturers lie. Torture is always done by the strong and valued, to the weak and devalued.

Everybody knew what happened, but nobody was talking about it. With the investigations that would go on that were never, never finalized. Because it was too hard. You would have the individuals with mental retardation and the person without, and of course the person with mental retardation couldn’t give you accurate information, according to what people thought, so the person that had abused, was often times exonerated.

— from interviews in Lest We Forget: Spoken Histories by Partners for Community Living

One of the worst parts of any of this, to me, is the fact that I am automatically suspect in anything I say about this, and all the supposedly wonderful, heroic, devoted, compassionate professionals have all the credibility.

I can’t count how many times I have tried to talk about this sort of thing, and been told that I have a bad attitude, any number of emotional problems, and a distorted sense of reality, and that I am somehow commiting a mighty sin, dissing all these sweet compassionate people. Guess what, once you have a bunch of sweet compassionate people try to kill you for who you are you don’t really start viewing them as all that sweet and compassionate anymore. (Describing this is not the same as “hate”, either.)

I’m very well acquainted with the fact that the rest of the world has no idea. They just have absolutely no idea how bad that is, how much it transforms one, or even what the experience is. It does transform one. Notice it provides that kind of an environment, where in order to survive, and I mean literally to survive, because there is overt and threatened violence, of which one has no defense, and this violence can come from any direction, and I mean any direction[...]

One very quickly develops a whole set of skills or lack thereof in some ways, just one ends up learning a whole bunch of ways of acting in the world that are completely unlike, they’re necessary for surviving in that kind of environment, but they’re completely unlike or irrelevant to, they don’t belong in the outside world. They’re sort of anti-skills. Take those skills out into the world and you become completely ineffective in a way. It does change one[...]

There’s, I almost want to call it a level of naïveté about what can be, in people who have not been through this. A kind of, I’m trying to describe something that I sort of know it when I see it but I don’t know… I guess many people don’t live with… I am trying to find words for concepts that… it’s a level of naïveté. A failure to understand how bad it is or can be. A failure to understand how the issues are really that of life and death, a failure to understand the importance of… yes, a failure to understand. There’s a level of unseriousness there, a level of too much faith in the system as it is now, too much misplaced faith in it. And too much, I would almost call it eagerness to try to prove or establish that they are not like these people almost. Like that these people are not them, that they’re better than people who’ve been through that and in any case those people deserve it and in any case it was good for them, and in any case, you know, and if it wasn’t good for them it was not a systemic issue. It was just, that one instance. That exception.

— Laura Tisoncik, Conversation on Institutions

At any rate, this stuff is going on. Now. Here. Wherever “here” is for you, it’s going on. Whenever “now” is for you, it’s going on. It’s not something that’s only done “over there”. It’s not something that’s only done “back then”. This is ongoing, this is everywhere. Solving the problems at the Judge Rotenberg Center is only the beginning.

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