Identical behavior, contrasting responses

This post has been forming itself in my head ever since I went to both a DD self-advocacy conference and MIT within the same week last May. I’ve just for whatever reason not had the chance to actually write it.

I really enjoyed spending time at MIT. People there accepted me more or less as I was, and accepted a lot of other disabled people as well. In fact, their entire Human 2.0 symposium, that happened while I was there, dealt with the fact that disabled people get a lot of technology before other people do, and was about how technology that could enhance everyone’s lives was being developed specifically for disabled people all the time.

At some point there, I had a bad migraine and needed to lie down. They allowed me to lie down backstage under a table. I expressed fear over this. They were shocked and said that people lie down on the floor all the time at the Media Lab, that it was just part of how the place worked, and that they couldn’t imagine why I was afraid to lie down in public. I didn’t know where to begin with the sort of cascade of connections that went through my head more than ever at that point, but a steady stream of which had been falling through my head the entire time I was there.

In May, I went from a self-advocacy conference for people with developmental disabilities, to MIT. This involved an extreme contrast in what the lives of many of the people there were like, in terms of what sort of person they were classified as by society in general. In other ways, there was no contrast at all.

When I was younger, I went from assorted programs for students classified by the educational system as “gifted”, to assorted programs for people that the educational and medical systems had written off with a whole variety of labels. There was a great contrast between the way people were treated. There was, yet again, less innate contrast between the people involved than most people imagine.

If I were to describe being places where people routinely ate non-food items; had a variety of unusual tics; appeared to believe things that most people would call delusional; found it impossible to learn in regular classrooms; looked at first glance (and had been thought to be by others) what most people call “crazy” or “retarded”; were frequently under the care of neurologists, psychiatrists, and other such professionals; had unusual mannerisms and postures and behavior that in most places would be considered bizarre; and frequently had pretty extreme delays in areas like self-care; which one of these places do you think I’d be talking about?

If you thought special ed… the answer is yes.

If you thought mental institutions… the answer is yes.

If you thought gifted programs… the answer is yes.

I made the transition between these situations more abruptly than most, so I was able to see the similarities and the contrasts very starkly. Most people who have been in only one or the other situation, or whose transition between one and the other situation is gradual, or whose perceptions of other human beings come pre-filtered and pre-packaged to the extent that they see great differences merely based on what classifications the people belonged to… these people would not necessarily observe these things. I did observe them.

Lying on the floor is one of the things that starkly cuts through all of these situations in my memory.

I remember me, and a lot of other people, lying on the floor at places like nerd camp and other gifted programs. We were seldom, if ever, chastised for it.

I remember a tall boy in a mental institution who tried to lie on the floor in the hallway. I remember staff converging on him and saying they would have to do something about it. He wasn’t hurting anyone. He wasn’t even blocking anyone’s entrance to anywhere. Another inmate tried to say so. The staff told her that he needed to learn to do as he was told and needed to learn to look appropriate. They called for reinforcements, since he was a really big guy, and then grabbed him and carried him off to the isolation room while he fought them. His fighting them was seen as a symptom of a violent nature, rather than the natural reaction of someone who has been grabbed by several people to be carried off to a small, locked room, for doing something he considered totally normal.

People don’t always realize this simple fact: Lots of people do the same things for the same reasons, regardless of how they have been classified by the medical profession. Once the people doing these things are in an environment where their every move is watched and pathologized, they can get in trouble for it, or get put on an extensive behavior program for it. My ex-boyfriend ate paper and most people saw it as an eccentricity, because he was labeled gifted. There were a lot of people who ate paper in other settings, probably for the same reasons my ex did, whatever those reasons were (I never asked). People put them on behavior programs for it, because they were considered to be doing it “because they didn’t know any better” (and whatever anyone said in public, it was obvious they thought of a lot of us as “crazy” or “stupid” or both, and thought those to be the reasons we did anything they didn’t like).

I used to be unafraid of doing things like lying on the floor, even sleeping on the floor. Psychiatry made me afraid and called that an improvement. I walked into MIT afraid, and they were astounded at my fear, and disgusted at the sources of it.

I went through gifted programs terrified of when someone would discover that I understood less than they thought I did (in sociological terms I was aware, as few others were, that I was discreditable, but only partially discredited). But because of the privileged life I’d led in terms of that classification, while I legitimately feared being put in mental institutions and labeled, I never dreamed that I would become afraid of as innocuous actions as lying on the floor, running around squealing in happiness, or a number of actions that were deemed totally normal in the environments I lived in. But I did become afraid of those things.

For three days, twenty-nine staff members at Elgin State Hospital in Illinois were confined to a ward of their own, a mental ward in which they performed the role of “patient.” Twenty-two regular staff played their usual roles while trained observers and video gameras recorded what transpired. “It was really fantastic the things that happened in there,” reported research director Norma Jean Orlando. In a short time the mock patients began acting in ways that were indistinguishable from those of real patients: six tried to escape, two withdrew into themselves, two wept uncontrollably, one came close to having a nervous breakdown. Most experienced a general increase in tension, anxiety, frustration, and despair. The vast majority of staff-patients (more than 75 percent) reported feeling each of the following: “incarcerated,” without an identity, as if their feelings were not important, as if nobody were listening to them, not being treated as a person, nobody caring about them, forgetting it was an experiment, and really feeling like a patient. One staff-member-turned-patient who suffered during his weekend ordeal gained enough insight to declare: “I used to look at the patients as if they were a bunch of animals; I never knew what they were going through before.”

from The Lucifer Effect by Philip Zimbardo

And that’s what happens during what people know as an experiment. Imagine being put in such a situation because something about you was deemed pathological, by people who viewed you as such.

I enjoyed my week at MIT. But every moment I was there, I was conscious of what an autism “expert” had told me, which was that I didn’t belong at a university at all (if I ever get an MIT business card, she will receive one in the mail). I was conscious of being a privileged member of what was otherwise considered an outsider-caste to that whole system, conscious of this in a way that even with my fears I had not been conscious of prior to experiencing being shoved into the typical environments of that caste once others discovered my place in it. I was conscious of a society that tolerates and even celebrates certain behavior among those it considers highly intelligent, while condemning others to torture for the exact same behavior because they are considered either not intelligent enough, or too crazy, or otherwise deviant, or some combination of the above.

And I came home to my own apartment, where last week a staff person felt he had the right and even the obligation to report to my case manager that I was grumpy in the morning before breakfast (edited to add: in fact, he never made me breakfast, or lunch either). How many of you out there who share this morning grumpiness trait with me have it reported to a case manager and put in logs that would normally go into your permanent record, and even treated as signs of your overall personality?

(I should note that even many of those considered “highly intelligent” do, have, various, labels, and things like racism and classism can greatly influence what label a person gets. If I were anything other than white or middle-class, I might have had very different sets of labels much earlier.)

It’s because of experiencing the extremes of this so rapidly and close to each other, sometimes in such combination with each other (because my life can’t just be sliced up into two categories without any complexity to them), that simply having my normal behavior accepted at MIT for a week isn’t good enough for me. I won’t be satisfied in this regard until everyone else with a psychiatric or developmental label (or who would get such a label in certain situations) can enjoy the same freedom to be themselves in completely harmless ways, and the same level of inclusion in society and decision-making that affects us, that those of us considered “highly intelligent” often enjoy, and until nobody gets written notes in their official record for being a grumbly grouch before their morning breakfast or coffee.

Shrinking us down.

I’ve noticed a few things where I know what I’m seeing but I’m not sure quite what to call it.

I keep coming back to the reactions to “In My Language” (which, remember, I didn’t know would get more than a few people even viewing it, I expected no wider an audience than any of my other videos). As I’ve said countless times before,, I made it in response to the dehumanization of a girl with severe cerebral palsy. I made it to address a problem that affects not only autistic people or other disabled people, but also anyone whose language is considered lesser than the dominant language. Among autistic people, I did not mean it to be specifically about non-speaking auties, but about all auties whose communication and interaction is not recognized unless we speak what is essentially a foreign language to us — no matter how well or how poorly, or in what manner, we speak that foreign language. Language was after all at least as foreign to me, if not more so, when I spoke, and my communication through music, art, and my natural interactions with my surroundings was largely ignored and ridiculed at least as badly then as now. It was also about people, autistic and non-autistic, whose way of thinking is so different that it becomes regarded as not really thought at all, and the people thinking that way ending up thrown away and discarded as defective, “crazy”, or “vegetables”, or even “not having personhood”. And it’s about the focus on particular dominant kinds of thought and language as the only real ones or the only desirable ones, and everyone who differs, biologically or culturally, becoming automatically inferior.

That’s a pretty wide scope, and covers a lot of things that a lot of people don’t want to have to think about, or find difficult to think about.

Maybe that’s why it’s been packaged as “non-verbal autistic woman lets us into her world”, despite my constant protestations both in the video and out of it, that it’s not about that. It’s not about one individual person, it’s about a broader set of issues. It would be like saying that because I’m a woman then what I have to say only applies to women.

But if all I am doing is talking about my experience as an autistic person, then that’s all anyone has to take out of it. They don’t have to change or acknowledge much of anything, and if they do acknowledge anything, they will be acknowledging it about as narrow a group as possible. If not only me, then only me and other people who share a particular trait or two in common with me. No wider context need be looked at, the context has all been jettisoned already with the packaging of this as merely an individual story.

Something similar happens with the psychologizing of self-advocacy. Instead of being about people noticing and trying to correct injustices in the world around us, it becomes about people being driven by specific internal and individual psychological forces to doing this kind of thing. It again becomes really easy to dismiss what someone is actually advocating for, if you can turn it around and make it all about them, their supposed desire for attention or self-aggrandizement or whatever. I’ve seen these accusations leveled not only against me but against Larry Arnold, Donna Williams, Michelle Dawson, Temple Grandin, and nearly any other autie who’s received any degree of media attention, no matter what our true reasons for it (or whether we’ve even sought it out, or for what reasons we’ve sought it out if we have sought it out). Whether people agree with me or Larry or Donna or Michelle or Temple or any other autie is irrelevant, the problem is that gossip-fodder becomes more important to people than the substance of what any of us are saying, doing, or trying to accomplish. If you focus constantly upon our psychological motivations you can ignore the injustices that each one of us tries to bring to light.

The same thing, by the way, happens to autistic people who end up using some more direct and violent methods of asserting their rights or personhood. People who self-injure or attack other people or destroy property are said to merely be acting on pathological behavior, possibly entirely biological (mine was once blamed on “septal rage syndrome”, another time blamed on poor functioning of my prefrontal cortex), certainly tied to the “pathology” of being autistic in and of itself, and the idea that we might be reacting to real injustices the same way anyone else might when put in our position, is ignored entirely. I knew a girl who tried to pull the (abusive) staff off of me in a mental institution and all they did was regard her as manic and psychotic. Another girl had organized ward rebellions in a different mental institution and gotten the label of borderline personality for her efforts. And I went to school with an autistic girl who’d been labeled oppositional-defiant for organizing a protest at her previous and highly abusive school. This is not to say violence is the best way of handling these problems (or else I would still be handling problems this way, which I don’t), but you can’t divorce it from the situation and act like it’s just an individual pathology borne of mysterious internal forces. Or just people who have the supposed character trait of just being “angry” or “unable to let go of the past” or some other nonsense of that nature.

All of this psychologizing conveniently (whether intended or not) draws on the stereotype of autistic people as fundamentally selfish, self-contained, and self-centered (after all, autism literally means “selfism”). Never mind that some of the most selfless people I’ve known have been autistic (not that we have a corner on that or special powers in this regard or anything). Never mind that most autistic people I know are caring and empathetic about people besides ourselves, or else we wouldn’t be doing the advocacy work, whether in public or behind the scenes, that we’re always doing. We are supposed to do things only for the fulfillment of internal, psychological desires and needs. And we are supposed to stay in the role of only speaking about our own situations.

This ties into our role as self-narrating zoo exhibits and nothing more than that. I have a friend who rarely even reveals herself as autistic for fear that she will be asked to either tell her life story or educate parents, and be regarded as selfish and not fulfilling her natural role in society if she doesn’t do these things (and I’ve been told not only those things, but that as an autistic person I have no right to privacy and that if I believe in privacy then I must not be autistic!). When I say things like this, people think I’m against educating people about what it’s like to be autistic. I’m not, at all, or I wouldn’t do it so often. But it needs to be on our terms. Our lives are not textbooks for other people to pry open and read as they see fit. People have no intrinsic right to our lives and our self-dissections. For them to alternately insist, threaten, flatter, and wheedle us to give up those things to them is a problem, no matter how pure they think their motivations are. And anyone who does that should be aware that we can usually recognize the flattery and wheedling a mile away.

It’s also clear something’s wrong from what happens when we step out of that role. Telling our stories is not a particular threat to anyone’s sense of security, except those few who still want badly to believe that autistic people are by nature incapable of doing so. Actively stating ethical ideas (such as when I commented about the problems inherent in the idea of mental age) does step on some people’s toes, especially people who’re wrapped up in seeing themselves as “the good guys” and their idea of “goodness” being wrapped up in never doing anything wrong that one might have to change. Autistic people aren’t supposed to step on people’s toes. And when we do, what we have to say is psychologized, and it goes back to us supposedly being mean people who hate parents. If we’re mean people who hate parents (as someone will inevitably proclaim whenever we start talking ethics), then nobody has to listen to the substance of what we’ve got to say. And if we’re entirely self-narrating zoo exhibits, then the only substance of what we have to say is in the facts of how we function and nobody has to necessarily change their ethical behavior on that basis.

So what psychologizing our advocacy work, confining us to a role as self-narrating zoo exhibits, utilizing every disability stereotype possible, and confining our ethical statements to being “only about one person” or “only about autistic people” or “only about one kind of autistic people” or “letting people into our world of autism,” all have in common, is that they conveniently shrink the influence of our ideas and actions down to as few people as possible. It’s a way of missing the absolute most substantial aspects of what we have to say. If you read everything we write in terms of either our individual and psychological motivations or us “telling our own stories,” you never have to think that hard. And I think some people are doing this by accident, but for others (particularly those who know full well what’s at stake if people listen to us) it’s a very deliberate way of not listening to us, shrinking us down to size, and keeping us in our place.

Irit Shimrat in trouble

Just got this comment from Irit Shimrat:

Please contact me. I’m locked up and being given harmful “medications” in a town called Comox in British Columbia. I can no longer access my main (gmail) account on the computer for use by patients so I googled myself and found you. I can be phoned at 250-339-1490 but e-mail is probably better. The hospital is called St. Joseph’s General Hospital and I’m in the inpatient psychiatric ward. I’ve been here since July 5 or 6 and was in “seclusion” 12 days; don’t know quite how or when I’ll get out but have a paradoxical reaction to a drug my psychiatrist, though a good man, can’t understand he needs to stop giving me every day – it makes me quite ill. I thank you for having found me and very much wish you to find me again.

Yours in big trouble and much fear,

Irit Shimrat

Can anyone help her? I don’t know anything about the Canadian system.

Mental age is not acceptable.

In the posts about Ashley X some people have been referencing mental age again. Then Susan Senator posted the following (emphasis mine):

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

(I’m going to skip over the idea that Nat is not strong, not his own person, and that it’s not possible for him to go out into the world without his mother, and just focus on mental age here, but those are problems too.)

Please get straight what mental age actually is: It’s a myth. It says that if you score the same level on a certain test, that the “average” person of another age does, then your mind is really that age. That means that at the age of five my mental age was supposedly eight, at the age of fifteen it was supposedly eighteen, and at the age of twenty-two it was still supposedly eighteen. (Unless all my calculations are off.)

Do you really think that at five, I was somehow like an eight-year-old? I was not like any eight-year-old I’ve met. And at the ages of fifteen and twenty-two I was not like any eighteen-year-old I’ve met. I was eighteen when I was eighteen. Period. That’s the only time I was ever eighteen. Do I think differently than others? Yes. Am I a different age than I really am? No. Is it useful to construct me as if I am? No, it’s detrimental.

To say someone has the mind of a child (or an adult) because of a test score is like calling them a cat because they can’t fly. It’s nonsensical. It’s offensive. It’s responsible for some of the worst atrocities towards people with intellectual disabilities. And it’s not okay.

This is similar to those diagnostic parlor games that some autistic people like to play, while other autistic people are in the psychiatric system. Only this is idle musings about “mental age” instead of about the fine details of whether someone’s a sociopath or not. It’s just as bad. It does just as much damage. It should be accepted just as little. Mental age is not an okay construct to run around playing with. It’s a dangerous one, it costs adults our autonomy on a regular basis, it’s the basis for most of the restrictions placed on people with developmental disabilities, and it is not okay no matter what the excuse. People who purport to support the rights of people with developmental disabilities ought not to invoke it.

On psychiatry, privilege, and parlor games.

The concern has been growing in my mind lately that a lot of autistic people see psychiatric classifications of people as a value-neutral system that is essentially benevolent, scientific, accurate, and probably useful in understanding the way that human beings operate. A few of them have actually experienced psychiatry, but mostly in a cursory way that has avoided the nastier features. A few have experienced the nastier features of psychiatry and believe that if they just put themselves into the right classifications and frenetically avoid the wrong ones (while promoting stereotypes about those they do see as belonging to the wrong ones) then they’ll be okay. Most haven’t experienced much if anything of psychiatry at all and are speaking from a position of immense privilege.

Which is what I thought when some responses to the Autobiography of Anonymous were brought to my attention.

People were actually sitting around trying to figure out whether this woman is autistic or not.

Because apparently when writing about the wrongs that have been done to her, she should’ve been really careful to make sure to include all the stereotypical traits and DSM or ICD criteria she possibly could.

This is someone who has been chewed up and spat out by the psychiatric system where she lives, which is by all accounts (not just hers) nasty.

This is someone whose life is incredibly representative of what happens to chronic psych patients in general, and also of what happens to people who are both unidentified as autistic and not managing to “function in society” in various ways.

This is someone who’s been living alternately homeless, filthy, starving, and in jail because she can’t get the assistance she needs (and who has nonetheless kept looking for it trying to survive).

And people actually seem to care more what diagnostic grouping they can fit her in than what is happening to her.

Do you think this would be okay if she really were a “psychopath” or “attention-seeking”?

Do you think that whether she appears to you over the Internet to be “more autistic” or “more OCD” or “more other things” has a shred of relevance to the fact that she’s in trouble and needs assistance to get out of trouble?

Do you think it’s a good idea to classify someone’s attempts to get help to survive as “attention-seeking”? What about survival-seeking, hello???

Do you really think that psychiatry’s treatment and labeling of her over the years was benevolent, objective, and helping her in some way?

Do you really think that the idea that professionals automatically know what is going on in someone’s head more than that person does — and implicitly reinforcing that idea by automatically siding with professionals and doubting the person damaged by them — is not going to harm people?

I just get this picture in my head of all these people sitting around in relative comfort, playing a mildly amusing parlor game of “What category does this person fit in according to psychiatry, based on one piece of her writing?” and “Can I see autism in someone’s writing?” and so forth. And passing judgment on a woman they have never even met. While said woman might well be starving or homeless or on her way to jail again because she can’t get the assistance she needs in order to survive, and therefore has to put herself in positions where she knows she’ll get in trouble but it’s the only way she’ll be able to eat. The disparity and the callousness here is sickening to watch.

People need to wake up and realize that these classifications aren’t a parlor game, aren’t a neutral classification system, aren’t enforced by people with any more insight into human nature than the average layperson, and aren’t a mildly interesting way to pass the time while watching people at a distance and neatly sorting them into categories the way I used to enjoy sorting buttons as a young child.

They are a life and death matter to a lot of people who don’t have the privilege of sitting around discussing them in a calm and detached manner. The power of that system to essentially blacklist a woman from getting any help to survive, to heap derision and nastiness upon her everywhere she goes, to tell her who she is and deny her the right to define herself in any way, to ensure that no doctor will even see her, to ensure that she will forever be stuck between a rock and a hard place when it comes to survival, to ensure that Internet people will automatically doubt her because of the labels some in the system have bestowed on her… that needs to stop being lost on those who don’t have to live the sort of life she lives. And if people don’t think that it’s mostly privilege (whether ability, class, race, whatever) keeping them out of the same position she’s in, they’ve got another think coming. Her life greatly resembles the lives of a lot of people I know. And her life could be any one of ours. No amount of invocation of psychobabble (which usually translates into “take her, not me”) will change that.

People like her are in danger of dying and all some people can think about is what false medicalized category she belongs in and how “pure” she is or isn’t. That’s the bottom line here, everything else is details.

Autobiography of Anonymous

Awhile back, an autistic woman sent me her autobiography. She said I was one of the few people who responded to it. She’s spent years being labeled a psychopath. I offered to put her story on autistics.org. She just finally, after several weeks, agreed and sent me an edited form that’s more anonymous. So here it is:

Autobiography of Anonymous

Disability-Institution Metaphor in a Dream

I’m not normally a big fan of overfascination with dreams, whether in the traditional psychoanalytic sense or otherwise. This is probably because I was once so fascinated with dreaming (which I could control) that it was more interesting and real to me than being awake was. Which is a dangerous way to live. Since realizing that, the only control I’ve generally attempted to exercise is being able to wake myself up or change the course of things in the worst parts of nightmares. Aside from that I let my brain rest and do its thing instead of overtaxing it while I’m asleep, and I also usually consciously decide to forget my dreams in the morning rather than think about them all day (I can do either depending on whether I want to remember them or not).

But occasionally my brain turns out something with a downright interesting plot. Last night I had a fairly bad dream (I’m sure it’s what other people would call a nightmare, but I have long had a fairly unusual sense of what is and isn’t a nightmare), the plot of which was a surprisingly good metaphor for disability-related institutionalization (and I’m sure things of this nature actually happen to people in real life, too, although probably not the specific details). This is not a typical dream for me in several respects, but it seems to be a variation on my institution nightmares (which are infrequent lately).

Keep in mind, I don’t know much legal terminology about crime, I know very little about how court works (I’ve only been in a courtroom once or twice, for much more trivial matters, and always for other people, not myself), and the dream no doubt reflects my total lack of knowledge in that area.

I was watching someone being tried in a criminal court of some kind, for something along the lines of, doing something to help along a bunch of murders, but not actually committing them. That person was there, and the one surviving would-be victim was there. As they presented evidence, I realized that I was apparently the mass murderer in this case.

This was, of course, news to me. I haven’t killed one person, let alone several. My initial impulse was to believe they were lying about me, and that I had never done anything like this. But it did not seem like they were lying. (I don’t remember any words in the dream, the information was just being transmitted in some more direct way.) And the way that that surviving would-be murder victim feared me did not seem feigned in the least bit.

Which was weird, because I didn’t remember doing anything. But even while I didn’t remember doing anything, they showed a bunch of videotapes I’d supposedly made (along with the guy who hadn’t actually killed anyone but who had helped me kill people, or something) that clearly showed me pretty sadistically murdering a bunch of people. (I’ll spare the details, but they involved torture.) And it was clearly me, and what I was doing to them was clearly some pretty heinous killing.

I kept thinking that I hadn’t done that, but that I hadn’t done that was totally at odds with the evidence everyone was presenting against me, including stuff that even I thought showed that I really had somehow done this. I started to question what I remembered about myself, and wonder in what circumstances I could do something that memorable and not remember it. It seemed that they were probably right about me, and that there was something very wrong with me, on a moral level, because only a monster would do things like that. Most of this, I wasn’t thinking this with extremes of feeling, it was more of a sickened, sober reflection. But the weird fact remained that I did not remember doing it, and it’s the sort of thing you should remember doing.

I began to wonder whether I was in the wrong body or something. I also began to wonder how on earth they would believe me if I claimed to know nothing about all this, given that probably even someone who had done all those things would be trying to deny it if they could. I kept looking at the person I had apparently almost killed (that was on videotape too, but he got away) and wondering what on earth it must be like to be in the room with me then, and how he could stand it. I wondered, if I had really done these things, how anything I could do from then on could ever render me an even halfway decent person. I thought about what the people I had killed, and their families, must have felt about me, and couldn’t find a way to disagree, if I really had killed them.

Some sort of conclusion was being reached about the guy who was being tried that day — I can’t remember if he was innocent or guilty. They were then saying that I’d have to stay in jail until my own trial, which would decide whether I’d be in prison for the rest of my life or not. I sat there, still wondering whether I’d done it or not, and how on earth they could conduct any sort of proper trial if I didn’t know.

Then I woke up. I was not afraid, but I was certainly relieved to find that my memory had been correct, and that I had never done anything like that.

Being in, or being sent to, a disability-related institution is a lot like that. Only there’s no trial, at least not in my case, and usually no actual crime. (When there are hearings, from what I’ve heard from people who’ve been through them, they often do go roughly like I was describing: Even if the person believes something, everyone else’s beliefs about them take precedence. I personally was often held without a hearing and without being advised of my right to one.) But the weird mental twisting and warpage of reality, as well as being confronted with the “evidence” that you are or have done, something you are not or never did, until you begin to believe it, is very reminiscent of what happens in there.

“It’s on purpose. Really.”

I came up with this post yesterday, but was not feeling great so I couldn’t do the new-word-generation required to turn it into a blog post.

I’m working on a video that deals in part with what disabled children often think about what’s in their futures. While I’m not likely to include much of what I’m about to write in this video — it’s a bit tangential — some of the stuff I was coming up with for the video reminded me of it.

In The Me in the Mirror, Connie Panzarino talks about growing up with spinal muscular atrophy. She was told things in physical therapy like “You can move your legs, you just won’t.” She has a long memory — back into babyhood — and describes her life starting at a very young age. And, among other things, she became convinced that she could walk and just didn’t want to enough. She thought of herself as different from other physically disabled children she knew, because she believed that she, unlike them, had this secret that she really could walk and one day would once she decided to.

It’s important to note, about her and about what I’m about to describe about myself, that in a less ableist society, disabled people would not be likely to end up thinking this way, any more than most people (other than kids who’ve watched too much Superman, and adults who’ve read too much New Age garbage) think they could fly if they really tried. It’s not “only natural” to believe these things, it’s a product of growing up in a society that really doesn’t take people like you into account, in a big way. What I am about to describe is not pretty, is not desirable, and was not fair to the disabled people around me. But I was a kid, kids think things like that in societies like this one. I’m writing this — and a lot of other things — because no kid should have to grow up thinking what I did.

Anyway, I can remember the time period when my abilities started shifting around. When I say shifted around, I mean like someone came into my head and rearranged everything while I was asleep. I can’t remember if it was gradual or sudden. I don’t know how much of it was truly the loss of certain abilities, and how much was the loss of appearance of certain abilities that had been only tenuous and illusory to begin with. I do know I gained other abilities during that time period, that I’d never shown any remote talent in before. I also know I gained awareness of certain things I did, and could not do, at that time, awareness that I did not have before. And I know that some things really did vanish. Basically there was a giant shuffle taking place in my head, beyond the usual shuffling of puberty.

At some point, I convinced myself that unlike other people, who could not help being like me, I was different. I was better. (Told you this wasn’t very nice or fair to others.) I was only being like me because I was choosing to be an individual. Others like me were only being like me because they couldn’t help it. I tried to distance myself as far as possible, including from people who were in reality far more capable than I was at a lot of things. I, unlike them, could cease to do certain things, or start doing others, any time I wanted. I just… never seemed to “want” to.

This was backed up by, among other things, shutdown. I would experience a longing for shutdown when I was overloaded, and there it would come. This must mean that I controlled it and could will myself not to. Even though I couldn’t. It did not cross my mind that having an extreme longing for shutdown is kind of like an extreme longing for sleep: It’s a biological need expressing itself as a “want”, and if you manage to put it off for any length of time, biology will take over.

While this gave me a false sense of control, it also meant that I felt guilty a lot, and as if I was a horribly selfish person (in ways other than I was actually being selfish — such as by adopting this belief system, which is truly very self-absorbed). Who but a horribly selfish person would choose to flop on their back and wave their hands and objects in front of their face while other people around them “needed” them to be doing something different? Who but a horribly selfish person would delay an entire group of people by freezing in place while overloaded, and force everyone around them to try to figure out what was wrong? Who but a horribly selfish person would lose control of their body in all the myriad ways that I did all day every day, forcing other people to deal with the consequences?

Because I did. There were a number of things that were simply too painful to think about before I realized I didn’t actually cause them.

The time that being fed a combination of chocolate and espresso beans meant that I ran around wildly and then shut down in both movement and comprehension so far that I was sent to a neurologist in the aftermath.

The amount of time I spent staring at nothing, doing nothing.

The fact that school and language were both incomprehensible far more often than not.

The fact that I acted like, and felt like, I did not understand things, only to understand them far later (“must have understood all along”).

The fact that I spent most of my time either doing repetitive movements, not moving at all, absorbed in the sensory experience of various objects, or thinking about one topic and only one topic.

The fact that I spent a lot of the time not thinking in the usual sense of the word. (These days, I’d consider it thinking, but it’s not what people are taught thinking is.)

The fact that I couldn’t get my mouth to say much, if anything, that was in my head, and often couldn’t even get the thing to move at all.

The fact that I spent much of the time babbling nonsense unrelated to my thoughts when I could get anything out.

The fact that there was only a tiny amount of stimulation I could tolerate before everything went haywire.

The fact that I was in excruciating physical pain all the time and frequently reacted to it.

The fact that I did things like flop on the floor, run away screaming, make certain kinds of motions, and hide inside and under things, spin around in circles a lot, that nobody around me was doing.

All of these things and more troubled me greatly, not least because I thought I must be doing all of them on purpose, behind my own back, subconsciously, or something.

This, by the way, is why it’s a really good idea to discuss, and discuss often and accurately, being autistic, with your kids, even if you think they are too young to understand. They will come up with far worse explanations than anything you could possibly say to them.

Anyway, I believed that I could stop these things any time I wanted to. I believed this all the way into institutions (at least part of the time), despite the evidence that I could not. I decided that I must really want to be in them if I acted in the ways that got me put in them. I decided I was the most twisted, selfish, and bizarre person on the planet. Nobody knew this about me, I came up with it on my own, although plenty of people reinforced it along the way without knowing it. It was my worst secret and I dreaded the day that I would be capable of telling it and put on the spot. Everyone around me who acted just like me couldn’t help it, but, I was convinced, I could, and that made me both better and worse than them.

It became worse after a doctor harnessed my echolalia and echopraxia to get me to act certain ways that were actually out of conjunction with who I was. I said before that I don’t feel trapped in my body, meaning I don’t feel trapped simply by appearing disabled. By the time that guy got through with me, I definitely felt trapped, because what he had me doing was so far out of sync with anything I was thinking or experiencing, further than anything every had been. When, even in the face of all this, I acted from things like overload and incomprehension that were not going away, when I slammed my fists into my head over and over, when I didn’t understand what was going on, when I still couldn’t communicate, and yet this guy was considering me “much improved”, my mind twisted into more knots than it ever had been.

Nobody should have to believe that they are, consciously or subconsciously, causing themselves to be autistic. I happened to fall into the clutches of a psychotherapist who was a holdover from the old psychodynamic-approach days. This. Did. Not. Help. To put it mildly.

But this kind of bizarre rationalization can only happen in a world where it is made bad to be autistic. It’s not that the truth I wasn’t facing was such an awful truth, it was that this truth was made awful by the way autistic people are viewed and treated. By the fact that I was not being offered any true guidance or assistance that would have helped me. By the fact that there was no roadmap and the only roadmaps I had, told me I would be institutionalized the rest of my life and that this was the only fate possible for people like me (unless we could be miraculously cured).

There is no reason that people should have to believe things like this about themselves (both that some aspect of themselves is horrible, and that they themselves are the ones causing it). But it is disturbingly common that people do.

What happens when you ignore power relationships.

I’m not feeling the greatest again today, so here’s another post I found in my archive of drafts. I’m not at all sure when I wrote it:

My mind is currently in a rather boggled state. I’m reading an old review of Irit Shimrat’s book Call Me Crazy, in the Women’s Review of Books. Call Me Crazy is about the mad movement in Canada, and it’s entirely by people who’ve been in the psych system.

Here’s a quote from the review by Sheila Bienenfeld:

As a psychologist who for several years (eons ago) worked in a psychiatric hospital, I had some trouble with this seeming wholesale dismissal of psychology and allied professions. It was a bit of an injury to my professional narcissism. But one of the motifs of Call Me Crazy is that Shimrat and many of her fellow “survivors” feel that in their times of personal crisis they were treated by psychiatrists and psychologists, social workers and nurses, as incompetent or simply bad: their value as human beings was derided and their opinions dismissed. My feeling of being discounted and unfairly stigmatized in this book parallels what Shimrat and her colleagues often felt as patients.

Okaaaaaaaaaaaaaaay. (I had to stare at that last sentence several times over, and try not to laugh, and stare at it and stare at it and try to get it to make any more sense, and it didn’t, so I’m writing this.)

Am I to assume then, that Irit Shimrat and her co-authors locked Dr. Bienenfeld in a small room and would not let her out until she renounced her profession? Did they put her in a building where her every movement, statement, and feeling was noted and controlled by anti-psychiatry activists who repeatedly put pressure on her to stop practicing? Is she unable to practice her preferred profession or even state it openly for fear of housing, educational, and job discrimination? Do the police watch her more carefully when they find out that she is a psychology professor?

Are there a constant stream of articles in “reputable” newspapers that imply that violent criminals tend to be psychology professors? Does Bienenfeld lack any sort of standard recourse when Shimrat publishes her views on people like Bienenfeld? Does Bienenfeld have to worry, when she publishes opinions like this in a book review, that people will not take her seriously anymore, and may even discriminate against her?

Would it be possible for most people to truthfully relegate Bienenfeld’s views to a relic of the seventies (even though they’re being expressed in the nineties) and totally dismiss what she has to say on that basis? Is psychology treated like a joke by people with the real power? Would Bienenfeld have to struggle to get a book published about her views on psychology and keep it in print? Would it be close to the only psychology book out there, and then fade into obscurity almost as soon as it was published? Does she have to constantly have to remind people she’s not a cult member?

She got it right when she talked about ‘professional narcissism’. The things I just described have happened to the people who wrote the book. All she did was pick up a book and feel insulted by the fact that they took issue with people who had, and almost undoubtedly abused, power over their lives. I see no parallel between Bienenfeld’s experience reading Shimrat’s book, and Shimrat’s experiences at the hands of people in Bienenfeld’s profession.

This is an excellent example, though, of what happens when people do not take note of power imbalances. Being an inmate in the psych system, or even an ex-inmate or the sort of person most likely to become an inmate, is nothing whatsoever like being a psychology professor who dislikes a book written by ex-inmates of the psych system. This is a common mistake, though. Shimrat and her co-authors experienced threat to almost everything good about their lives (and sometimes their lives themselves) at the hands of people in the psych professions. Dr. Bienenfeld got her feelings hurt. I know where my sympathies lie on this one. Some people will go to great lengths to act as if power relationships don’t exist.

Psychodynamic “acceptance”

I’ve been sick today, so mostly resting or reading in bed and on the toilet etc. I’m rereading Let Me Hear Your Voice, masochistically enough.

I found an interesting point towards the end, that shows the context in which a lot of people could misinterpret the idea of accepting an autistic person as autistic (and not just those considering themselves opposed to acceptance for that matter). The author — who believes in “recovering” children through Lovaas-style ABA combined with other stuff — points out some similarities in many of the psychodynamic ideas about autistic people.

Basically, a lot of them — regardless of what they think the innate cause of autism is — consider that there is a non-autistic child inside the autistic child, and that child needs to be shown love and acceptance, and anything less than that will prevent that child from “coming out of their shell”. Parents whose kids don’t “recover” are then blamed for not “accepting” their children enough. She describes this in terms of Bettelheim, holding therapy, the Options Method, and other such practices. (She herself was drawn into a holding therapy cult at one point — cult being her word for it, not one I’m imposing.)

So, when a lot of parents hear about acceptance, there’s a good chance they’re hearing echoes of that kind of crap. Which has never sounded all that much like acceptance to me, since it’s acceptance of a person (the “normal child inside autism”) who doesn’t actually exist. And when they hear autistic people saying that parents need to be more accepting, they’re probably actually hearing those echoes of Bettelheim even though they’re not really there. (Such as Kit Weintraub’s bizarre set of accusations against autistic self-advocates.)

Of course the problem is that the counterpoint she sets up against this is just as bad. It’s all about how she’s going to drag her kids kicking and screaming into the world of normalcy, and treating their autistic behavior as horrifying and purposeless and to be extinguished, and so on and so forth.

Both “sides” of this look incredibly medicalized and pathological from where I’m looking.

It’s very difficult to say something like, “No, I’m not saying something from either of two extremes, nor am I in the middle. I’m way off to the side in some other direction entirely.” People want two extremes, or they want (if fashionable enough) a “spectrum” between two extremes. It seems difficult to write something and actually have it read without imposing a black and white category on it, or else a gradation of grey between black and white, when really we may be talking fluorescent purple or dark green or something.