Extreme measures, and then some.

Standard

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

54 responses »

  1. It happens in “old folks’ homes”, too.

    Last week, my boss went to visit someone and *observed* a staff member moving the woman rather roughly, ignoring the lady’s cries of pain (bedsores on her legs). (My boss intervened and told the staff to be gentle.)

    It’s part of the whole dichotomy of “power” vs “powerless” and what people are capable of once they’re given power over other human beings.

  2. This is one of the most powerful things I have ever read. Thank you for posting it. I know this will resonate with me for a long time.

  3. Regarding what Jannalou said: Yes. When I talk about institutions, I’m talking, pretty much, everything from nursing homes to group homes to state institutions to private psychiatric wards to ICF/MRs to orphanages to prisons to what I call “distributed institutions” or “institutionalization in the community”, in terms of where this kind of abuse of power takes place. It’s like the Stanford Prison Experiment repeated thousandsfold or more.

  4. I recently re-listened to some of my old tapes of talk-show interviews — subject, “Multiple Personality Disorder” — in which all but one of the guests said they had been through some kind of excruciating physical, emotional or sexual torture. One of them, describing herself as a “black-market baby” (she was old enough to be one of Georgia Tann’s), described a situation almost identical to the institutions you describe here. The only difference was it was supposed to have been her adoptive parents. At the time I heard it, it seemed entirely believable to me, and still does.

    A few years after these interviews, the SRA scandals and lawsuits (most caused by insurance fraud, but that part’s been underplayed) hit the fan. The public was told that all recovered memories of extreme abuse in childhood were false memories suggested by overzealous therapists. This is not true. Some people really do repress — unconsciously, or deliberately try to forget — and later recover memories — often spontaneously, without being in therapy. It was then very easy to fool the public into thinking that all adult claims of childhood abuse, period, were false memories, or “drama”, or “attention-seeking”.

    Because of the nature of our website, we get angry letters now and then berating us for saying that child abuse doesn’t exist. We also get letters from people who assume that we claim we were never abused as children. Nothing could be further from the truth. We were abused mentally and physically because we were multiple and autistic. Some of the same things you describe about the institutions, happened to us in our kind, loving parental home (with plenty to eat and beautiful clothes). We don’t speak about details on our website because it is personal to us.

    A close friend& are in a situation where their family are, in effect, an institution; total control. Every single thing they do is second-guessed and psychoanalyzed. They are being made unable to think for themselves, to be perpetually dependent on having someone else tell them what to think and believe and make their decisions for them. The end goal is complete deprivation of autonomy.

    What is the difference between a parent who does these things and an institution? Are people more likely to believe it when it’s an institution?

  5. They’re probably slightly more likely to believe it when it’s a conventional rather than an “at-home” institution. I knew a lot of people (myself included) who were in situations where home was being run like an institution (in many cases, also, because that’s how the parents had been told this kind of child had to be handled), and then the child was shipped off to a highly institutional (more than the average school, which are bad enough) school, and then to segregated day programs. That’s one example of what I call “community institutionalization,” and it’s also why I have absolutely no idea when I got out, like I literally can’t name the number of years I was institutionalized because it all fades seamlessly into each other.

    You’ll note also that the group home owner Ruth Ryan describes, if she had been a parent rather than a group home owner, would have been considered to be engaging in “Munchausen by Proxy”. (She had another inmate, who supposedly had a ‘flat line EEG’, but actually had a near-normal EEG, and had untreated medical problems that, if treated, would have allowed her to regain consciousness. She got an infection, and the group home director authorized withholding of treatment because “after all she had a flat-line EEG”. And most of her inmates died before reaching adulthood, which she euphemized as “doing a lot of hospice care”.)

  6. Oh, I’ve also noticed that the trend in middle-class American families at the moment seems to be for a degree of regimentation that seems institutional by my standards (or by the standards of my or any recent previous generation as well, I’d suspect). And that’s becoming the expected norm as far as I can tell.

  7. So few care because so few have the courage to trust their eyes. Your writing proves the reality of what I see.

  8. Meanwhile, I’m wondering, how do we stop things like this in general, not just at the JRC?

    A question I asked over and over as I read. Criminals are treated better than this by far. How DO we stop things like this??????

    Thank you Amanda. Not easy to read but important that it be told.

  9. If the pro-ABA fighters in Canada and the DAN! parents and the mercury parents and ASA here would put their energy into fighting this abuse the whole world would be better, instead they push their kids with chemical upon chemical and hour upon hour of “therapy” to “make them normal” so they won’t end up in “institutions”. How about making sure there are many fewer or no institutions when the kids grow up? There is a profound lack of interest in older autistics (who don’t exist anyway) and a profound lack of interest in poor kids and minority kids and anyone else’s kids. From what I understand the Judge Rotenberg center was going to have a table or applied to have a table at the next ASA or DAN! conference. What do you bet they’d be welcome at the Autism One Conference, after all they are forcing vegan diets on these autistics.

  10. Thank you for showing your “Dreadful Places”.

    I hope we can stop the bad things which are going on.

    I know deinstitionalisation in Australia has ended up making much worse things for some people. But at least they are free in the community.

    I think we need to change community expectations.

    Home as institution – interesting point. I want my home to be my home and not something else.

    Of course abuse of power takes place everywhere because power is distributed in relationships.

    How would you change relationships between people?

  11. Most so-called “deinstitutionalization” movements are not fueled by human rights concerns, but rather by money, and lack of wanting to spend it. Therefore, instead of putting any supports in place, and instead of respecting the people who are moving, it is done in a horrid way.

    People get dumped on the streets. (Although I know many, many people who’d rather be there than an institution… nearly all of said people would rather be somewhere else than either place.)

    People get moved into mini-institutions.

    People get separated from their friends.

    People get stuck with little or no support or assistance.

    And then other people use all that to justify institutions.

    And then the human rights people end up not always wanting to look at all the mess in the “community” because it might give ammunition to people who want to re-open institutions.

    Plus, a lot of what you get, is not really institutions being gone. It’s state institutions being gone. You get a lot of private institutions and mini-institutions and so forth still in operation, and those can be worse in some ways.

    But, one thing I don’t believe, is that the solution to a mess that was caused by institutions in the first place, is putting up more institutions.

    As far as power being distributed in relationships, that is true. However, think of the following extremes of examples:

    1. People who can’t dress themselves because they are royalty and have always had attendants to dress them.

    2. People who can’t dress themselves for more functional reasons, and have attendants of a totally different sort dress them.

    In one extreme, the person being dressed has too much power. In the other, too little. But the same task is being performed. This suggests that it’s possible for there to be people who need help getting dressed, and get that help, but not be treated like garbage, nor spoiled royalty, in the process.

    As far as institutions, there need to be genuine, real supports “in the community” (much as I hate that phrase) for us, that do not have us at the bottom of an agency’s power hierarchy (there are ways of doing this, I’m not an expert on them). “Deinstitutionalization” has often not focused remotely on providing that until later on when everyone was already in a crisis.

  12. Oh, I’ve also noticed that the trend in middle-class American families at the moment seems to be for a degree of regimentation that seems institutional by my standards (or by the standards of my or any recent previous generation as well, I’d suspect). And that’s becoming the expected norm as far as I can tell.

    I think the home-as-institution is becoming less and less a metaphor. There seem to be an increasing number of families nowadays who won’t allow their children outside unsupervised, ever, ostensibly because of media-exaggerated fear of kidnappers and child molesters (even though most cases occur within families). And, of course, more and more parents are dragging their kids off to psychiatrists to be drugged at earlier and earlier ages, whether because the kid couldn’t sit still in church or was afraid of the dark or read too many fantasy novels (like the mother who posted to a mailing list worried that her autistic son was reading ‘too much fantasy’ and wondered if Thorazine would bring him back to the ‘world of reality’). And there are a lot of parents who hold institutionalization as a threat over their children’s heads to get them to behave, even if the child’s problems are what would be considered ‘normal’ by most people.

    Some of this was happening in my generation, also– not so much the physical confinement (although some families certainly did that) and the drugging (although I knew plenty of kids who took something) as the subtle emotional brutalities. I was very familiar with them, anyway. The attempts to convince you that you are a different person than you really are, that you have thoughts and motivations that you do not really have and like things you do not like and hate things you enjoy, and being punished for going against this concept of the person they think you are; the attempts to confuse you until you do and say things you wouldn’t normally and the things you do under that stress being used as ‘proof’ that you are what they say you are; being made to constantly apologize; being cast as stupid, childish, attention-seeking and melodramatic for thinking there’s anything wrong with what’s going on, seemed to be standard parenting techniques in many of the families I’ve known. I think one of the reasons people have so much trouble believing that it’s these things which do the most damage in institutions-in-name, more so than many of the ‘obvious’ tortures, is because their upbringing has convinced them that these things are normal, and how children (or people equated with children) are always treated, that trying to do anything about it is futile, whether it’s fair or not. But a lot of them have been taught to fervently defend the idea that it was all necessary and good for them.

  13. After reading this entry I read through some of the documents on the JRC website.

    At one point during the reading, I was pulling at my hair — not pulling it out, but pulling on sections of it. I do this often. It’s normal for me. But as I was sitting here, doing that, I read about the institutionalized kids being shocked, restrained, etc., for doing exactly that. Touching hair. Because it might “lead to something worse” or because it might “interfere with learning”.

    I am somewhat at a loss for words right now.

    But this sort of thing is just atrocious. And I completely understand the point that it’s not the relative “exoticness” of a particular aversive, etc., that makes it horrible. It’s the fact that humans are being tortured and punished for being human. And that people think this is “therapy”.

  14. “It’s like people look at you as if you’re a piece of moldy vomit only with more contempt involved.”

    I recognize that. Where I work there are a large number of people who distinguish between the ‘cute’ children with disabilities (eg CP without any behaviour issues), and those children with thigns like ASD, ADHD etc. The ‘cute’ kids get looked after, drinks fetched etc (and talked down to and condascended to as well). The others are definitely mouldy vomit.

  15. In reply to M:

    I forgot about that dynamic. There can be, kind of two or three layers of how people are treated in those places. And, yes, none of them are good, they’re just different. I’ve noticed envy for the other levels of the hierarchy, on each level of the hierarchy, but having been on most levels of the hierarchy at different times and in different places, they’re all pretty nasty.

    There’s also… the people who learn to act like staff, and who may end up being treated almost like a mascot by staff, but who staff still definitely look down on.

  16. In reply to Julian: I’d never thought of it that way, but that makes sense.

    I once actually had someone tell me — someone who had no experience of their own with being conventionally-institutionalized mind you, but had conventionally-institutionalized their child — that conventional-institutions were good because they meant the child wouldn’t be abused at home.

    Now I’m aware that there are some circumstances where an institution is better than a particular home, but as far as I’m concerned that’s a deplorable statement about the home, and not a good statement about the existence or nature of conventional institutions.

    I’ve seen a lot of middling-to-good homes (in terms of dynamics, not in terms of outward appearance or conventionality). I’ve on extremely rare occasion heard (verifiably, as in not Stockholm syndrome or someone who wasn’t there long enough or in an unfavorable enough category to notice how bad it was) of an institution that reaches middling or vaguely good at a particular point in time (and “at a particular point in time” is important, it’s not the institution itself that necessarily stays better than usual over time).

    There can be individual good staff in institutions, but I’ve seen those turned into bad staff (as in, I’ve watched the process over a period of months), and I’ve seen them unable to change what was happening and therefore the nature of the institution itself overpowered whatever goodness they had as individuals. And the existence and power of said people, in practice, is greatly exaggerated, usually by people who have a vested interest in making institutions seem better than they really are.

    On the other hand, I’ve seen a fair number of decent parents out there, and the family structure is often a structure in which the existence of one or two good parents can change things drastically. (Whereas in an institution, one or two good staff are overpowered by the vastness and structure of the institution.)

    So I think a family has far more potential to be a good place for a child, than an institution does. Unfortunately, there are a lot of crappy families too. (And I’m not trying to diminish that, I’m just talking here in rebuttal to the person, not here at the moment, who told me that institutions had less potential for child abuse than families did. That’s not actually backed up by research. They used to think that abuse would occur less in institutions because “care” was spread out over a larger number of “caregivers,” but it actually ended up making abuse more likely. Big surprise.)

  17. JRC is actively engaged in classic brainwashing: Skinner demonstrated that the terror of random punishment is much more effective at modifying behavior than the punishment itself. Food is withheld and then students are punished for the natural physiological response of bad behavior. Brainwashing is not limited to the student. Staff is subjected to slaughter house videos. They are given impossibly complex rules of conduct and then are rewarded for turning in other staff members and punished if they do not. Desperate parents are shown outrageously opulent rooms (no GED packs on Mickey) and told this is their child’s last hope. New York pays huge amounts of money to dump troubled kids in this “pretty” place. Everyone is either detached or suffering from Stockholm syndrome.

    Where does all of this come from? Just Google HARVARD MK ULTRA and you will find out a lot of horrible CIA funded experiments at Harvard on behavior modification, including brainwashing, using chemicals, drugs, hypnosis, and electric shock. JRC’s director got his Ph.D. from Harvard 1960; just when MK ULTRA was at its peak.

  18. 2 things I was wondering after reading this:

    1. What SHOULD be done for kids/etc who have a problem like that (that seems very severe and possibly dangerous to themselves) if it doesn’t respond to other things tried. (I’m not saying this to argue, I’m saying it because I think the same thing — that it is wrong to hurt people, but don’t know how to reply when people say “What about a kid who ____. (Fill in the blank with some sort of extreme behavior.)

  19. Oops I clicked submit before finishing.

    2. What can individual people DO about these types of issues? (I guess here I am referring to not just this specific situation, but the bigger picture of hurting someone and calling it helping; in the different forms that takes.) (Especially if you are not very influential or very good at sharing views with others, and don’t really have a wide network of people you could “forward the info to” or whatever.). I know I like to take some kind of practical action, not just get angry and not use it in any good way, just become discouraged. I am not very good at figuring out on my own what sort of action to take, and can find informational articles talking on the internet about how this kind of thing is wrong (like this email site, autistics.org, and some different anti-psychiatry websites). I tried to look on yahoo groups to see if there were any about these issues, but couldn’t find any. So, I can’t find any people who are interested in talking about these things, or practical ideas of what can be done. It seems like there are things that CAN be done, for example this article talks about this person who started some fund for autism support that truly tries to help people, but dont see any info about how to contribute to this, or how to in any other way help. I looked on the site of autistics. org and all it seems to say is that people can write articles (which I’m not really good at doing) or some paypal thing (I don’t use any of those online money things.) It is hard to figure out what I could do to help people, that would be possible for me!

  20. One of my own refutations to those kinds of questions, is that there are some things that are indeed worse than doing nothing. Torture is one of them. These are things that should not even be options. The fact that they are being made into things people see as options is half the trouble. I mean, amputation of limbs is not generally an option for motor tics, I don’t see a lot of people going “But what about people with severe tics…”

    As far as what to do, I wish I knew. Don’t try to contribute to that fund, because it doesn’t exist at the moment. Part of why I made the post is because I don’t know what to do about it.

  21. The Hippocratic Oath sets forth the “ideal” world.
    http://www.geocities.com/everwild7/noharm.html

    Laura does not realize that if you let a place like JRC shock a 10 year old child who is banging her head to the point of blindness, you also allow JRC to shock a 17 inner city child just because they don’t like his street talk. And there is no guarantee that either child will not be harmed.

    Suffering is hard to watch. Most people go out of their way to not see it, either by denying the suffering person’s humanity and/or by exiling her body (or mind) to some far away place. People who have no fear of suffering give those who are suffering love, comfort, and respect.

    Yes, people have done terrible things to other people. But they have done wonderful things as well. If you want a better world embrace Charity.

  22. ballastexistenz: That makes sense that some things hurt worse than they help. I would guess that probably 99% of the things that are considered a severe problem could be dealt with by either finding out what the person is trying to communicate, or not forcing people to do things that don’t work for them.

    About what to do about it — I wonder if there is some way people who are concerned about this could work together? It seems like it is something none of us can fix, but maybe many people working together could accomplish SOMETHING?

    Jackie: I just wanted to clarify that I do realize that when you allow harmful treatment, it makes it easier to apply to a broader range of people. (Another example would be a medication that has harmful effects used involuntarily “off label”) And I am personally against ANY form of treatment/help that the PERSON finds harmful, no matter what the situation! What I don’t know, is how to respond to people who hold the opposite view, and challenge me with things like “What would you do then, with a person who ___” (And they use some extreme example.

    Also something I think, is that it is wrong to make choices for others, to say it is okay to do something that “helps” (really hurts) because the person can’t make good choices themselves. I guess I feel so strongly about that, that if I was in a position where I felt like some treatment/help/etc was essential to “help” a person, and they did not want it, if I had the power to force them to do it I would not do so. I would find that the “harmfulness” of making a choice that had consequences (say if the treatment refused truly would have helped, maybe like in a medical condition) would be small compared to the “hurt” of forcing a person to make a choice that they don’t agree with. That’s just my opinion, also by thinking “treat others how you want to be treated”

  23. JRC’s treatment is impersonal and dehumanizing – any normal relationship between a student and teacher is actively discouraged. When it developes it is imediately undermined. Students (and staff) are punished by people watching every move and listening to every sound in the control room far away. JRC films everything that a student does 24 hours a day. Just remember what you did when you were 17… And these are not only people who are low functioning. Most now are dumped there directly from the NY public schools.

    Some students have electrodes on five different parts of their bodies so that they cannot prepare for the shock when they see someone pick up the trigger. And if by any chance, they do guess correctly and happen to dislog the right electrode, they are automatically shocked somewhere else on their body.

    Would you turn your child over to an organization like this, even if they told you it is the only hope? Do you think people should have the option? Do you think that NY tax payers should pay these guys $213,000 per year, per student to inflict torture on troubled children?

  24. Can I point out that none of the pics seem to be showing? Is it just me or is everyone else having this problem?

  25. Pingback: Ballastexistenz » Blog Archive » Everything we have missed?

  26. In response to comment #29 – I was wondering how they prevented people from removing electrodes. Seems they’ve found a method that, from the point of view of the person getting shocked would be absolutely horrible, But probably looks like nothing at all to most everybody else if they don’t know what’s going on. Unfortunate that It’s not so visible that those electrodes aren’t staying on willingly.

  27. Pingback: Autism Vox » Too close to shock

  28. If you REALLY want to change things at JRC or any other place, then you need to go to work for them and do it from the inside out, instead of sitting on your butt!

  29. Working at institutions does not generally change the institution from the inside out, the institutions tend to change the workers from the inside out, and that is not a pretty process at all. I have seen it happen over and over again to idealistic staff who thought they could “change the system from within” and ended up being “changed from within by the system”. Only a very small number of people can withstand that kind of pressure, an even smaller number manage not to get fired for being decent, and even so, all those few who are left offer is an island of decency in a corrupt system, rather than un-corrupting the corrupt system.

    These are places that nobody should work, because the places shouldn’t exist.

    But aside from that, I’m not exactly employable (or even close) within the current American work system, particularly not in that kind of job.

  30. BG, working for JRC is hell. The students are rewarded for “tripping up” the staff members – 150 reward tokens if they intentionally do something which the teacher does not pinpoint. The teachers are evaluated by the people behind the camera. The guy who in charge of evaluating teachers is a former landscaper and has no significant education experience.

    It is an extremely dangerous place to work. There was a riot on a bus a year ago and the staff prevented the police from boarding the bus. Both staff and students were hurt. There is nothing at JRC but punishment for staff and students.

  31. I was a, er, “patient” at the Menninger Bullshit Center in Topeka in 1999. What a scam! There were 67 buildings on the brouchure, all but 2 or 3 were locked and vacant. In a 7 day week, there were 2 -3 hours of useless crap Monday through Friday, that’s 10 to 15 hours and the rest of the time I started smoking cigarretes again and spent talking with the other people there about what a load of crap the whole thing was. That place was a 100% bullshit scam. Acres and acres, tons of buildings, and maybe 3 doctors. The kitchen fed you a constant stream of french fries, ice cream, and fresh made chocolate cake. Everyone there gained tons of weight. They treated you in a very disrespetfull and degrading manner. It’s 6 years later and I still feel angry about it. The treatment was humiliating and absolutely of no gain. In fact, the anger about it has been a huge thing to deal with. In the end, the doctors here in Hawaii ended up agreeing that their drugs didn’t help, and I was issued a state licence for marijuana, and haven’t had depression since. Fuck Menninger’s, I hate those lousy fucks and their narrow closed minds.
    One thing I learned was that in psychiatry most of the doctors are more fucked up than their patients.
    I went through a 10 year “bad period” and regret ever seeking so-called “professional” advice, it did so much harm and was of no use.
    What a huge waste of time.

  32. What is the best appoach for helping a person with self injurious behavior which is not responding to any traditional treatments and is likely to be fatal?

  33. In some cases I think parents have literally no choice but to institutionalize. I heard of one woman who had two kids, a bipolar, suicidal daughter and a very developmentally delayed son with life-threatening seizures. She tried to look after them both, but realized that it was too much for her to handle, that one or the other would die. She put her son in an institution where he probably wasn’t treated well but at least she knew his seizures were looked after. (I know some institutions have blatant negligence of medical conditions such as seizures, but this one at least kept him alive.)
    In that case, I think she really made the best choice for that situation. But she should never have been forced to choose like that. Instead, she should have gotten support in home to keep both children alive – such as a nurse who’d stay in their home to take turns with the mother dealing with the needs of those two kids.
    She compared it to Sophie’s choice. Sophie was this Jewish woman (not sure if she actually existed) who had two children, and was lined up to get gassed and a man came up and said he could sneak out one of her children, but couldn’t save both. She had to pick which one lived and which one died. I think that analogy works well, in that the dilemma was caused by a faulty system.

  34. I had asked the question, “What is the best appoach for helping a person with self injurious behavior which is not responding to any traditional treatments and is likely to be fatal?” becasue I am curious to know what the alternative living condition is. I have read reports that some people are tied to their bed essentially 24 hours a day and that many others are sedated to the point that they cannot really walk or make any meaningful decisions. If I were given the choice between a behavior contingent aversive and a total loss of all freedom, even the loss of freedom to think (through excess meds), I’m really not sure which I would choose. I understand that medications can also significantly shorten the life span. When we talk down aversives, are we actaully advocating for something MORE restrictive? Who is the best person to decide?

  35. No one is opposed to kindness. Please describe what that would entail for someone as described in post 43 above. I’m sure you don’t mean just to let them die at their own hands, do you?

  36. Amanda,

    I know this is an old blog post but still I felt the need to comment. The extent of my “inmate experience” was four years at a special education school for emotionally disturbed children. If you don’t mind I’d like to share a few of the things I experienced and witnessed:

    -Medical needs being intentionally denied as a means of demonstrating the authority of the teacher.

    -My dislike of touch being made sport of by an administrator, who has since received a lofty promotion to principal of her own special ed center.

    -Being informed that it’s right to be upset when assaulted by a fellow student, however being given no protection from assault and punished for protecting oneself.

    -Holding a twelve-year-old child to the floor in a way that prevents breathing, and then ignoring that child’s pleas for air, forcing him to try desperately to get enough air to scream with.

    -A thirteen-year-old girl punished with isolation for complaining that a teacher had made aggressive sexual advances at her.

    -The occasional visits by local media in which the teachers and administrators would dress up their behavior with noble intentions and “progressive” impulses.

    -Being told that it’s wrong to see the school officials as abusive, and that you just don’t understand what they’re doing for you, after they’ve made sport of your sensory issues and restrained you to the point of suffocation.

    -Having your anger at this abuse pathologized and treated as misbehavior.

    -Being informed that the administrators who treat you this way are really “on your side” and “doing what’s best for you.”

    -The threat of being sent somewhere worse if you don’t shape up and accept your abuse with good humor.

    Thank you if you read all this, it feels good to express that.

  37. Pingback: Ratifying and Implementing the UN Convention on the Rights of Persons with « We Can Do

  38. Pingback: Alas, a blog » Blog Archive » Phoning It In

  39. Pingback: Autism is no excuse for child abuse « Pathways Developmental Learning Center

  40. Just as a heads-up, the pictures in this piece appear to no longer be working. While it doesn’t take away from the value of the text, it does reduce the overall impact of the piece on any NTs who read it.

  41. Oh, I should clarify I worked just one year as a volunteer in various nursing homes (just going around talking to and listening to residents trying to bring them a little cheer). I did not work as an employee. Also, I worked in nice private nursing homes where the care was much better, but I also visited a state nursing home once, and it was BAD (people restrained all over, bad smells from feces and urine that was not changed, people with blank looks on their faces just rocking back and forth out of boredom as opposed to the private homes where there was no smell, no restraints, and people in the halls actively engaging in conversation, but even in the good ones I saw and heard enough to know I wouldn`t want to ever be in one. The good homes did not practice abusive policies (although some residents told me of a few bad apples that had been there and threatened the lives of residents if they spoke out)but the problem I would have being in such a place is residents were told when they HAD to eat and they HAD to eat the diet prescribed to them by the dietician even if they protested, they were told when to get up, when to sleep, when to bathe, they were not free to go outside if they wanted to take a walk in the lovely weather, they were made to take medicine that I saw was used in place of a physical restraint, families were pushed heavily to sign a paper to let their loved one die without any intervention if their loved one reached a certain point (the patient was not consulted on this paper because when the patient entered the home they had to have a guardian who would make decisions on their behalf so they lost all rights to say “no” for themselves), they had to basically give up all their worldly possessions to enter a home and once they entered they would most likely never leave, many were home owners placed in the home against their consent so they had to deal with feelings of betrayal from their loved ones, etc. To me the worst part of these good homes was losing the freedom to say “I want to sleep in today” or “I would like to take a bath without someone watching me”,etc. The abusive homes, of course, have that plus so much worse. It sounds like these JRC places are the worst of all because they rob a child of their childhood and replace it with horrors that no one especially a child should have to endure. I feel very sad for anyone who has had to go to such a place. It should not be.

  42. My 1st comment apparently didn`t go through which makes my 2nd one rather meaningless so I will try to sum up my 1st comment again. I expressed looking at the link Amanda gave & was surprised to find how lovely & professional the centers looked, yet in reality they are hell. Amazing! 2nd I expressed surprise at the fact that these centers were for the most difficult care cases yet ppl sent ADD children there. I was SHOCKED! I have an ADD child but I`ve never heard of anyone sending a child w/ADD to an institution & it has never crossed my mind as a possibility to do with my own child. ADD kids can be draining to a parent but they’re our kids & ADD does not include any physical disabilities that would limit a person from functioning independently when they grow up. Most ADD ppl grow up, have their own families, and jobs so I was shocked to see that ppl put ADD kids in institutions. It was actually scary to me that ppl considered ADD kids need institutionalized. This was the 1st time I`d heard of that. 3rd I was shocked to read that JRC frankly wrote that until recent history they spanked, pinched, squirted water, used “aromaic ammonia” (I don`t know how that was used but I know ammonia is a strong dangerous chemical. I wear a mask and tell my kids to leave the room when I use it), vinegar, etc. as forms of behavior modification. They wrote that these were “effective” forms but skin shocks are more effective because in the past some patients “enjoyed” the other forms of modification. I found that disturbing. These centers take kids through adults. I don`t know any adult who would “enjoy” being spanked nor do I know any active, curious child that would “enjoy” being restrained and having vinegar put in their mouth. I found it a bit perverted that they would actually say ppl “enjoy” that kind of treatment and to write it in such a natural way that they expect anyone who reads it to understand and agree. Finally, I wrote that institutions throughout the world have a consistent history of cruelty. It seems to be human nature when you put a group of humans under the authority of other humans, a degree of humanity is lost. No longer are individuals seen as priceless individuals with individual personalities, feelings, moods, abilities, etc. This is a universal problem that I`m not so sure can be solved since humans just seem to naturally gravitate in this direction when placed in a situation like this. Therefore, I wrote that I think the solution is 1) take all measures to stay out of instituions
    2) Unfortunately, there are cases where families grow old, sick or something else and can no longer care for their loved ones so an institution may become the only option left. In that case, I wrote that families just need to stay very active in their loved one`s life. I then expressed what I observed from working in a nursing home (what I should have wrote was from volunteering in a nursing home). Anyway, I noticed those who have familiy and friends steadily coming in, generally get more prompt staff attention and just the presence of visitors tends to put a shield of protection around the patient because staff know that active family members WILL notice marks, bruises, changes in the loved one`s demeanor, etc. And they will question these things. Also, my mother was a teacher and likewise she said that the students who have active parents in the school generally get better treatment than the kids whose parents seemingly don`t care. Having involved ppl in an individual`s life is a check and balance to the system.
    3) Of course, advocate and report any abuse.

  43. Pingback: Shortchanging people through low expectations: Societal Edition! « Urocyon's Meanderings

  44. Reblogged this on Rambling Justice and commented:
    Worth following the link to read the whole thing–it’s depressing to realize how commonplace these issues are, but also important to know because we NEED to know what’s happening in order to fight against these human rights abuses. Yes, the original post is dated 2006, but unfortunately all of these things are very much still happening in 2014.

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