Monthly Archives: May 2006

Library Thing

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Library Thing is a site that allows me to list and categorize books.

Here are some ways to view them:

Be aware of two things:  One, the tags are not finished yet, and many are where they should not be or are not where they should be.  Two, my ratings are highly subjective, may be based on one tiny facet of the book, and are not intended to persuade or dissuade.  (In other words, make up your own mind, but don’t accuse me of inciting censorship.  I can’t believe I have to say that, but I’ve been accused of censorship for merely stating public dislike of books before.)  Oh, and I guess there’s a third thing, which is that a lot of these books were given to me by various people, and I’ve also undoubtedly got some books unlisted because I loaned them out and forgot about them.

“Never Daydream”? Umm…

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The BBC has a story called “Autistic Brains Never Daydream”, that discusses an experiment in which autistic brains and non-autistic brains were different ‘at rest’.

This supposedly shows that autistic people don’t daydream. I don’t know all the details of the experiment, but it involved measuring the brain activity of autistic and non-autistic people, both during a counting task, and while staring at a cross. There was a particular kind of brain activity that occurred in non-autistic people “at rest” (looking at the cross), that did not occur in autistic people “at rest”.

The question I’m asking here is, how do they know the autistic people were “at rest” while looking at the cross? When I’m looking at something, that’s not restful activity, no matter how still the something is sitting. I’ve daydreamed before, though. It seems like they could just as well have been testing the difference between when autistic and non-autistic people are likely to daydream, as the difference between whether autistic and non-autistic people daydream.

I hope the experiment was designed better than the news articles are making it look like, because if it wasn’t, I don’t know how they can claim to know all that based on the experiment as described.

More careful, not less.

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Dave Hingsburger has a training video about the ethics of touch in the human services field. He describes, in great detail, what kinds of touch are and are not acceptable, and under what circumstances, between staff and developmental disabilities.

One of the audience asked him something like, “Well what about people who are more severely disabled?”

Hingsburger’s answer was (paraphrased), “The more severely disabled a person is, you have to be more careful and more strict about boundaries, not less.”

This makes sense to me. Which is why it does not make sense to me when people talk about human rights as if they only apply to “mildly” or “moderately” disabled people (in whatever fashion “mild” or “moderate” is being defined at that particular moment in time, being aware these terms don’t necessarily reflect reality). They say things like, “This would be utterly horrible if it were done to nearly anyone else, but you’re discounting the more severely disabled people.”

To me, “more severely disabled” (however that gets defined) means less able to fight back, less able to talk back, less able to do anything about what is happening. (Where “less able” can mean “less enabled”.) And to me, that means being more careful about violating the rights of people regarded as severely disabled. Not less careful. Not disregarding rights entirely as if these are “special cases” who need to be treated with less respect than everyone else.

I am afraid of losing certain abilities. But it is not the loss of abilities that scares me. It is not the inability to move on my own. It is not the inability to understand or operate a keyboard. It is not the lack of certain kinds of communication skills. It is not loss of memory. It is not perceiving a jumble of patterns of colors and sounds and smells and movements and so forth without perceiving what other people perceive about it. These are things that happen to me from time to time, that may in the future happen more often. It is not the fact of these things that frightens me, though.

What frightens me is what people are likely to do to me. I have had people slap me, punch me in the face, kick my body, kick me in the head, shake me, grab me and carry me, twist me into different postures, stick their body parts into my private parts, grab my body parts and stick them onto other people’s private parts, wiggle their private parts in my face, leave me outside in the cold, confine me to an institution or an isolation room, regard me as ‘non-communicative’, have contests of jumping up and down on my hands, avoid making life even remotely interesting for me, and make all kinds of derisive statements and jokes about me. All because they could get away with it when I was unable to do anything about it, or because I was assumed not to matter.

Often people seem to assume that all or some of those things don’t matter when dealing with a “severely disabled” person. They may even believe that some of those things are necessary when dealing with a “severely disabled” person. Any of my fears about being “severely disabled” (well, I’m already classified that way, so I guess I mean “more so, in the conventional sense”) stem from those things that people can get away with, not from anything intrinsic to being that way itself. It’s possible to be quite happy while your body functions that way, but it is more difficult to be happy when being systematically mistreated, abused, and hated.

I am scared to tell about the time I almost drowned at the state institution. I am so angry. Don’t let me near a knife. I was in the bathtub when I heard them talking about me and saying, “Wouldn’t it be cool if Bedward drowned in the tub?” I heard them laugh and tell each other, “I dare you to go push his head under.” But then the supervisor came in and they stopped the plan. Yes, it was the worst day of my life.

Roy Bedward

I have been in similar situations to the one Roy Bedward describes, and been unable to do anything about it.

People talk about institutions, aversives, and other awful things, even death, being better, or at least more understandable, for… that kind of person. Certain human rights being optional for… that kind of person.

I have to say I am with Hingsburger on this. In the area of human rights, and in being treated fairly, we need to be more careful, not less careful, with people who are less capable of doing anything about violations and abuse. Then, maybe, at times when I lose those abilities, I won’t be so terrified, and people in general won’t be treated like moldy vomit.  It makes no sense to argue for more violation of people’s rights the more “severely” they are said to be impaired.

Turing Tests

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The Turing Test is a test of a machine’s ability to mimic human words and conversation, and is supposedly a test of whether the machine is truly intelligent. A person converses with something, usually in text, where they can’t tell if the something is a machine or a human. If the machine can’t reliably be distinguished from the human, then the machine passes the Turing test.

I have had people try to give me Turing tests, as if I were a machine. People have tried to employ trick questions to see if I am really the person writing what I write. People have done this to me in person, where the vast majority of the time the fact that I am, mechanically, the one doing the writing, is indisputable.

When this happens, I find it insulting. I find it annoying. But I am in a situation where, at present, nobody is going to take my keyboard away if I don’t pass the Turing test. Nobody is going to deny me an ability to communicate in words. Nobody is going to force me to revert to life without a viable communication system. And if they did try, I have people on my side who would fight them to the bitter end.

Nonetheless, there have been situations that have filled me with terror. Situations in which I have been unable to communicate in words, and other people have been unable to help me communicate in words, and in which horrible, potentially life-threatening decisions were being made about me. (Remember, I have anaphylactic reactions to several neuroleptics, and neuroleptics are the drug of choice in “calming” auties.) Situations in which I was being mistreated and had no way to tell anyone for years to come. Situations in which my communication devices were denied to me.

I also know what it is like to be evaluated by outsiders. Evaluation is a nerve-wracking process, when you know that your life may depend on the outcome. It is being dissected, with little pins put in you, and people making wrong statements about your insides while listening to their instruments more than they listen to you. If you want to horrify me, schedule me for an evaluation. It’s dehumanizing and the stakes are very high.

What I stand to lose if an evaluation goes wrong, is services. The services do keep me alive. But at the moment, I don’t stand to lose a communication system if an evaluation goes wrong.

There are a number of ways in which it seems, from an unemotional standpoint, to make sense to test someone to find out if they are really communicating. Obviously, the reasoning goes, if they were really communicating, they’d cooperate fully with the test and that would be the end of it.

Have you ever had a test on which something incredibly valuable — your life, your ability to communicate — depended? Would you perform as well on such a test as you would normally? Would you flub answers? What if you lacked confidence in whatever you were being tested in? Would you seek answers in any way you could, doubt your own answers?

Human beings are not unemotional creatures. When the stakes are so high, we become terrified. When people insist on believing we are someone we are not, in ways that have bearing on those high stakes, we feel insulted. Our reactions, when terrified, offended, or insulted, are not necessarily going to be the reactions of someone who is detached from the situation.

Anne McDonald, a woman with cerebral palsy who used facilitated communication starting decades ago, was asked by a court to participate in message-passing tests. McDonald had grown up in an institution. She had learned institutional survival skills there. And she was insulted by the testing. Everything in her told her not to cooperate with the tests. She finally did cooperate, and was proven to be the one really typing, but she held out to the last second.

Many people who use alternative communication, or facilitated communication, have institutional survival skills. Many have little experience of being treated as communication partners rather than as moving objects. Many have little experience of being believed in as who they are. Many find the entire act of communicating in words quite difficult. Many have motor or perceptual skills that are significantly affected by fear. Many have little confidence in often-newfound ways of communicating in words. And many have been in situations where others have always been “right” and they have always been “wrong”.

Now imagine you’ve spent ten, twenty, thirty, or even more years of your life unable to communicate in words. And you’ve started to, and this has become really important to you. And someone gives you a test. Where tests have historically meant not only things you’ve “failed”, but things (such as IQ tests) that have made a big impact on your life. And if you fail this one, it means you will possibly never get a chance to type again.

I’d just like to know how many people, in that situation, would find it easy to pass such a test, and how many people, in that situation, would not find it tempting to look for answers from the person assisting you with taking it.

I know that it is very easy to say that all of this is easy, that I’m just grasping at straws here, that this couldn’t be what’s going on, and so forth. But I’ve been in situations where testing means a big chunk of my life could be taken away, and I’ve also been in situations where people tried to informally test whether I could really type or not. And that is how I respond to these situations, even though in all other situations I’m a fairly self-confident person with communication skills that are easily verifiable: I try to look as cooperative as I can. I balk at what would normally be very easy questions. I look around for other people’s answers, and trust them over my own. And then I go home reduced to a nervous wreck for days, feeling like I’ve just been violated, insulted, and misjudged at the same time, but aware that now a lot rests on how other people see me in a 30-minute high-stakes period, rather than how I see myself every day.

I hate that a professional view of me is thought more reliable than my view or the view of people close to me. I often repeat the “safer” view of another person who is considered more credible than I am, and sometimes I doubt my own credibility even though it has been shown to be very high. I end up thinking, in those situations, that everyone else but me must be right about me. And as I said, the rest of the time my self-confidence is pretty good. A friend has described this as, “Okay, you’re spending all this time with someone you know to be intelligent, dynamic, and interesting, and then you put her in a room with a few staff and she turns into this passive lump.”

But I rarely use physical support to type, and when I do, I can always later confirm or deny what I’ve said with obviously-independent typing.

Some people claim that after appearances before massive audiences and stuff this shouldn’t be hard — I’ll tell you, presenting or speaking in front of a large audience is hard, being dissected in high-stakes situations is several orders of magnitude harder. Using physical support during a relatively high-stakes hearing recently was also much more difficult than giving a presentation, but the people involved had already seen me type without support so my worries about their view of my ability to type turned out to be unfounded, if ever-present. I’d rather humiliate myself in front of a hostile audience than be subject to certain kinds of scrutiny in high-stakes situations.

There are of course a lot of people who manage to do the message-passing thing, and pass these sorts of tests. Sharisa Kochmeister and Anne McDonald both had to pass them for court cases, but both struggled a great deal to do so. Sandra Radisch describes telling people very specific information unknown to her facilitators. Eugene Marcus had to practice over and over again to do it, and the result of his practice made it into a book. Many people have learned to type independently to refute claims that they are not typing.

But when people don’t pass what amount to Turing tests, it should not be automatically assumed that the reason is because they are not capable of writing. This can have potentially devastating consequences, and it is partly those consequences that make it so terrifying in the first place.

Taboos and Autism

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Autistic people are very different from non-autistic people, and those differences run all the way down to the core of personality and awareness. And there’s nothing wrong with that! It’s our nature as autistic people to be different in those ways–it’s the way we’re supposed to be… Even though non-autistic people may hate or fear or pity us for being different, I think they really need us to be just the way we are. We’re the ones who notice that the emperor isn’t wearing any clothes.

— Jim Sinclair, What Does Being Different Mean?

I’ve quoted that before, but it’s relevant again. Oddizm says that autistic people are ’eminently hate-able’ by many non-autistic standards, and cites social reasons for that. I think the problem that many people have with us runs far deeper than that. Oddizm urges people to ignore the lack of social niceties and listen to the content. Which is good advice. But quite often, the “problem” is the content.
Autistic people violate more than expectations. We violate taboos.

We do not just violate one taboo, or one particular set of taboos.

We do not just violate the “known” taboos, the taboos that aren’t really all that taboo. We do often violate those, but we also violate the ones that are so taboo that few people speak about them and even fewer know what they’re talking about when they do.

I do not mean that we all violate all taboos all the time, or that none of us ever uphold these taboos. That would not be true. Any given autistic person may violate some taboos and not others, may even uphold still other taboos.

I also do not mean the taboos in any particular culture, such as the society I happen to live in. This is beyond particular culture.

We perceive and react to things that other people have reached an agreement not to perceive. We mention things that there are tacit agreements never to mention. We call people’s attention to things that they’d rather not pay attention to. We do things that everyone else has agreed not to do, and in some cases not to even speak of doing. The agreement people reach is not a deliberate agreement in most cases, it’s a part of the process of growing up within a culture.

We don’t do this because we lack social awareness. We do this because we have a different kind of awareness, and a different kind of reaction to the world. We don’t do this because we are pure innocents who just don’t understand. We do this because we have a different kind of understanding. To reduce this aspect of us to a state of “purity,” “innocence,” or “ignorance” insults us on many levels, and not just the obvious one.

But, regardless, we do it. And the responses we get can range from destructive degrees of violence and hate to destructive degrees of reverence and awe.

I am “lucky” enough to break some of the most fundamental taboos of the society I live in. I am not talking about sex. Sex isn’t as taboo as people think it is, it’s all over the place. I violate rules that are so strict that thinking or talking about them or even noticing them is not something most people are willing to do. In fact describing them can invoke a degree of terror in people that I’m not willing to invoke by describing them. Fortunately, describing them is not all that necessary in life, and I know a few people I can discuss this with.

In the past, I was more obvious in terms of some of the taboos I was breaking. People’s responses were strong. I would be put on a pedestal one moment and stomped into the ground the next. People reacted to imaginary versions of me. People can be very dangerous when terrified.

I learned to follow the conversational aspect of the taboo, to the point of even refusing to name it, but I have never followed and will never follow the behavioral aspect. Still, though I am an extremely honest person, there’s an extent to which I have to, if not actively lie, at least consent to and go along with having lies created around me by people with me, in order to have most relationships with people. A lot of what people imagine of me simply isn’t there, but there is no way to negate that without causing serious problems, so I’ve learned it’s better for everyone involved, even if what others imagine is negative, to let them imagine. Most of the time.

Not all autistic people break those particular taboos, although a large number break at least one of them. But we do break taboos, both strong and weak, both spoken-of and unspoken-of. And breaking deeply rooted taboos means incurring wrath and even hatred. We are calling attention to things people desperately want to avoid calling attention to, and we are not engaging in some people’s most highly cherished but possibly-unspoken beliefs, and that causes a strong reaction.

It’s also our job. Part of our role in society is to notice what other people miss. This is not a better role than the roles of any other kind of people, but it is an essential one. It requires being outside of at least some taboos, because people miss things as a result of taboos as much as anything else. It requires being outside of at least some of the kind of filtered perception that non-autistic people have trouble escaping. It requires autistic people. Not a whole society of autistic people, but autistic people as an essential part of society.

When I say this does not make us better, I am trying to guard against the pedestal effect. We are not, as I have been called, “purer” than most people, and we are not “more human” than most people. The stereotype that all stems from is something that can exist only in people’s minds. Real people are not like that, although real people can be misrepresented that way. We are also not “more necessary” than any kind of people or the “next step in evolution” or any of that. We do have a part to play, however, and we play it, no matter what kind of communication system we have, no matter what our professional labels are. It is not wrong to acknowledge that.

Not all roles in a society are valued, noticed, or loved by most people within that society. The roles autistic people play are often unnoticed, and when noticed they are often devalued, hated, and shunned. This does not make us, or our roles, unimportant. The taboo aspects of the way we operate in those roles, do make us “eminently hate-able,” and make it very easy for people to justify what they do based on rage or hatred. Not all negative reactions to us stem from this, but some of the strongest of them do.

Extreme measures, and then some.

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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.

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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.

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  • 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 buildingSarah 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.

Everything I need to know in life I learned in institutions.

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(Warning: Facetiousness ahead.)

When told to do something, do it. Don’t ask questions. No matter who it is. No matter how much of a stranger they are. When told to do something three times, with rising amounts of annoyance, by staff, do it right away and then run off and hide.

It is perfectly reasonable for a stranger providing a service to say “I’m not going to argue with you,” when you’ve asked (not argued) why they haven’t provided the agreed-upon (and paid-for) service for the past three days. And then it is reasonable for said stranger to tell you what to do. And then to tell you how they’ve been becoming more reliable over the past three days, when in fact they have been becoming steadily less reliable.

The proper response to all of this is either to shut your brain off and accept everything they say as fact, and to do what they tell you, no matter how nonsensical, or to internally flog yourself repeatedly for having the forbidden thought that they are being patronizing and bossy.

Never, ever ask questions like, “Why should I do that?” “Can you explain the rules to me more clearly so I don’t screw up again?” “What did I do?” Etc. Just do what you’re told and it all becomes very simple. Even if you’re being chastised or yelled at for what would in anyone else be ordinary behavior. Even questions that are very deferent and assume that you’re the one doing something wrong, are out of line, because they’d require explaining things that nobody wants to explain.

Apologize. Constantly. Even if you don’t know what you did, or don’t think you did anything. If you’re lucky, you’ll get an approving, condescending smile and nod, and a compliment on your excellent social skills.

Don’t ever, ever talk about any of this once you get out, or compare any community services situation to an institutional one. Be grateful you’re not physically locked up. In fact, be cheerful all the time if you can manage it. Anything less is a clear sign that you’re in bad emotional health, and all comparisons of power dynamics out here to institutions can be explained by your own personal shortcomings rather than the fact that usually the comparisons are valid. Don’t ever show that you’re displeased with anything related to this, because then it will be assumed that you are perpetually unhappy.

All political activity is likewise pathological in some way. Trying to make sure others don’t experience what you’ve experienced is a sign that you’re not as “over” it as you should be rather than a sign of commitment to friends you left there or dedication to human rights. (People who were never institutionalized, on the other hand, can safely be praised for any work they do in this area.) The best sign of “adjustment” is complacent assimilation with as little reference to various periods of your life as possible.

And don’t ever mention, in public, that on a perfectly good day when everything else is going well, your mind can be tied in all kinds of knots by a simple interaction with staff, because this will surely be taken as proof that people like you are behind other people your age, can’t cope with the demands of the outside world, and are in general doing something wrong.

And, always remember, no matter how long you’ve been out, you’re just on probation.

Got curious again about book statistics…

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I have trouble with arithmetic and several other things involved, so don’t take these as perfect. This is only about the autism-related books, not about, say, Temple Grandin’s books on livestock. And I know there’s stuff I still need to add to the booklist, so, yeah, this is not exact. (And I also don’t believe in the exact category splits described here, but a lot of people who keep track of these things do, so they’re in here.)

And, yep, I made mistakes (how did I get “one female diagnosed with Asperger’s” instead of “16 females diagnosed with Asperger’s”???) so I corrected some just now.

There are 125 books by 70 authors.

40 of the authors are male, 1 of the authors is intersexed, and 29 of the authors are female.

73 of the books were written by males, 1 of the books was written by an intersexed person, and 51 of the books were written by females.

33 of the authors are diagnosed with autism, and 37 with Asperger’s.

67 of the books were written by people diagnosed with autism, and 58 of the books were written by people diagnosed with Asperger’s.

Among authors, there were 19 males diagnosed with autism, and 13 females diagnosed with autism. There was 1 intersexed person diagnosed with autism. There were 21 males diagnosed with Asperger’s and 16 females diagnosed with Asperger’s.

Among books, there were 36 by males diagnosed with autism, 30 by females diagnosed with autism, and 1 by an intersexed person diagnosed with autism. There were 37 written by males diagnosed with Asperger’s, and 21 written by females diagnosed with Asperger’s.

16 of the authors diagnosed with autism could not speak (17 could speak). 12 of the non-speaking authors were male and 4 were female.

25 of the books by authors diagnosed with autism were written by people who could not speak (42 by people who could speak). 21 of them were written by males and 4 were written by females.

So… basically… there’s somewhat more males than females writing books. There’s somewhat more books by males than females. (There’s only one intersexed person that I know of, who wrote only one book.) And among non-speaking autistic people, there’s a LOT more males than females writing books. There’s slightly more authors diagnosed with Asperger’s than autism, but somewhat more books by people diagnosed with autism than with Asperger’s. Among authors diagnosed with autism, there’s a fairly even balance among speaking and non-speaking authors, but somewhat more books by speaking authors than non-speaking authors.

I keep hearing that there’s more books out there by males than females, but no matter what time period I try to figure out, they’re always either even, or slightly more males than females. (Except when you get down to non-speaking autistics, in which case suddenly there’s tons of males and very few females.)

Booklist updates, and questions about where to get some of these.

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I have updated the autistic authors booklist in two ways. One, is I’ve added more books. Another is that I’ve tried to go through and link to the websites of authors. I’d been linking to some when I remembered to, but this time I’ve done it systematically.

Also, a question. Does anyone know how I, in America, can get a copy of Joffrey Bouissac’s book? His website says, Mon livre “Qui j’aurai été” est UNIQUEMENT distribué par l’association”Autisme Alsace”. Great. So it’s only available through that one organization. And that organization’s website cheerfully informs me that it doesn’t accept international orders, right before crashing my browser entirely.

I also can find only one reference, anywhere, to John Brine having published a book called It’s the Only Dance I Know. I certainly can’t find where to obtain said book.

Anyway, here are the books that have been added (anything in strikethrough is a book by the same author that was already on the list):

  • Axel Brauns
    1. Buntschatten und Fledermäuse. Leben in einer anderen Welte. (2002)
    2. Kraniche und Klopfer (2004)
    3. Tag der Jagd (2004)
  • John Brine
    1. Confusion, Loneliness, Depression: Asperger’s Syndrome – A Journey (2000) – with Patricia Brine, later retitled Two-Stepping in a Waltz World
    2. It’s the Only Dance I Know (2006)
  • Eric Y. Chen
    1. Mirror Mind: Penetrating Autism’s Enigma (200?)
  • Kasper Bastholm Elsvor
    1. En helt anden verden – En beretning af en ung mand med Aspergers syndrom (1996)
    2. Dødseksperimentet (2000)
  • Will Hadcroft
    1. Anne Droyd and Century Lodge (2004)
    2. The Feeling’s Unmutual: Growing Up With Asperger Syndrome (Undiagnosed) (2005)
  • Roger Meyer
    1. Asperger Syndrome Employment Workbook: An Employment Workbook for Adults with Asperger Syndrome (2001)
    2. Group Experiences for Asperger Syndrome Adults – What’s in it for Me? (FUTURE)
  • J. Kevin Vasey
    1. The Road Trip: Life with Autism (2005) – with Gloria Pearson-Vasey

Here are the authors whose websites I finally linked to (including authors I added today), note not all are in English, authors in bold are from articles in anthologies rather than full books:

I am now too exhausted to continue searching out webpages for this. (Yes, I find switching windows on a computer to be cognitively strenuous, go figure.) So that’s where I’ve stopped today.

Overload thresholds really are pretty relative to the person.

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I’ve been meaning to write this post for a long time. I don’t know why I never ended up doing so, but I remembered today, so I am writing it today. I guess it falls under, useful things to know if you’re an autie and dealing with other auties. It’s stuff I’ve been figuring out myself. This may be stating the obvious for all I know.

Approaching dangerous levels of overload looks different in different people. Something important I’ve noticed, is that the signals for it are entirely dependent on the person, and on what their normal abilities are, and what their thresholds for certain kinds of shutdown are.

I’m remembering in particular a conversation I had with a friend once. She said… something like (I could be getting this wrong, I’m picking what I think was the particular trait that changed), “I’m starting to get to the point where words, spoken or written, are just running together and making no sense.”

I replied, “Yeah. That’s how things are a lot of the time for me. But in you that would mean trouble.” And we kind of laughed about it.

I remember, once, reading someone talking about an utterly horrifying experience he had. He described his mental state at the time in terms that are usually reserved for people who have no mental state. And then he told me what he meant by it, and it was something I experienced on a regular basis.

I still don’t agree with the words he used to describe it, but I’m starting to understand why it is that he would find it a lot more alarming, and a lot more of an “imminent danger” signal, than I would. It’s not part of his normal, it’s part of mine.

Likewise, I was at one point experiencing a great deal of pain with typing to the point where I strapped a bent stick to my arm and typed with the stick. The reactions of a woman who knew me, and a man who worked in the facilitated communication field, were very different. The woman who knew me was commenting on the frustration I was probably experiencing because of the speed issue, and the man was congratulating me on how well I typed compared to people who use more FC than I do. (Although I’ve seen FC users type way faster than I was typing that day.)

Meanwhile, I’ve seen people talk about dangerous (to them) levels of overload and shutdown, when losing skills I’ve never had in the first place.

This isn’t meant to be one of those vacuous statements about looking at how fortunate you are in comparison to someone else. It’s more the opposite. I can see a potential for auties to say, “Well I never had that, so losing it isn’t a big deal, I live without it all the time.” And I keep thinking “No, this is one of those things that really is relative to how someone is doing normally. For some people, losing the ability to talk signals a big crash, for other people it is commonplace. The fact that it’s commonplace for some of us does not negate the fact that it signals a big crash for others.”