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.

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.

Videos and Stuff

I made the following video after observing a lot of things. Someone on YouTube called me a mong, which is a British term for retard. I saw other people on there being called retards, and I found some of people’s responses to being called that, almost worse than the people calling them that. Sort of like straight people who go out of their way to prove they’re not gay to people who call them a fag, instead of grasping that the problem is the bigotry, not whether they specifically are gay or not. Lots of people say “I’m not retarded” when someone calls them a retard. That seems to me to be missing the point in a big way. (So does “reassuring” me that I “don’t look retarded”.)

I don’t endorse using the word retarded or retard casually, quite the opposite. But when someone starts calling me a retard, or a mong, or any of those other words, my immediate response is not to distance myself from the group of people they’re insulting (that itself is an insult to that group of people), but to say, yeah and proud of it, or yeah what’s wrong with that? People have been telling me I “look retarded” since I was a kid, I might as well respond in some way they don’t expect.

Other people, they express astonishment at my intelligence, and then they act like I’m a “smart” person “trapped in a retarded-looking body”. That’s not how I experience my body. At all. Nor is it really how I experience my mind. People ask me how I feel about that. Often. Or they ask me how I feel about being “lumped in with retarded people” in special ed. As if that’s the problem with segregation, is actually (gasp) having to spend time around other defectives like me. No. Wrong move. Wrong idea.

So, I made a video, about reclaiming insulting language, about why on earth it’s considered such an insult to be called slow, and about why I happen to consider most people’s well-meaning back-handed compliments (“you don’t look retarded,” “you’re so smart for how you look,” etc) more insulting than being straight-out called a retard. And about why I think, when we (anyone) are referred to as retards, the proper response is not to distance ourselves as fast as possible from the class of people we believe that term refers to.

That’s my video. It’s captioned. There’s lots of my cat in it. She’s doing cat stuff, but she’s also doing some very specific things she does to get me to move in response to her. (Which is why she has — not a joke — legal service animal status, officially and everything. She can get me moving when I can’t move otherwise. She serves the same role as a human facilitator. And nobody ever accuses her of writing for me.) Apologies for the construction noise in the background, but, that’s another reason captions are good.

And, just for sheer silliness, here’s a video of my cat drinking out of the sink:

Condensed old-post response to twisting of experiences

Typing hurts so this is a condensed version of a long post. Apologies in advance for lack of nuance. The long version was written before my last several posts (written last week) and resemblance to later happenings (which in some places is strong) is coincidental.

This is about me but surely applies to many others so should be read as broad-contained-within-narrow. So should many of my posts which some people mistakenly read as person-specific or autism-specific.

People call up an image with words. They use it to sell their cause of prevention, cure, institution, etc. The image is in many heads a fuzzy stereotype, in other heads such stereotype imposed on real people yet untrue even on the people.

People throw words in my face one after another as justification.

The words evoke real inside life for me not life of hypothetical or outside person.

They say ‘banging head’ I know the feel the constancy the effects on vision motor skills and thinking and other-side-of-head splitting headaches and blacking out. I know counting of thousands of banging per hour.

They say ‘institution’ I see hear feel smell real concrete lived experiences inside.

They say ‘alone’ I remember total isolation. Also remember presumed lack of social interest while interested. And remember how long I believed, and gave up on the belief, that there must be other people like me in certain ways, in the world, before I started one by one finding them.

They say ‘in a corner’ I remember exact one corner, specific corner, spent ages barely moving all the details of this.

They say ‘no understanding’ I remember the waterfall sound of speech still often happen, and pattern rather than typical abstraction. I also remember still often people speaking as if I not exist not understand people even telling each other “she doesn’t understand”. I remember nonsense sounds that years later understood the words, that were thought I would never understand or remember. I remember understanding things others never even thought to understand and thus never tested.

They say ‘no communication’ I remember endless attempts to communicate ignored, robotic non-communication praised. I remember interpreter after interpreter barred from helping because “she could not possibly be communicating that complexly with only her body, we see no real communication”. I remember impossible to communicate many things frustration, I remember before I knew what communication was, I remember only knowing bits. I remember now using alternative communication, I remember gradual loss of speech.

They say ‘will never’ I think of all people said I will never do just ten years ago that I have done. I think of prerequsites for ‘independence’ that I never met yet but here I am in my own apartment.

They say ‘unaware of danger’ I remember balancing on fences, climbing trees in unusual ways, walking into traffic, licking or trying to eat inedible objects, sometimes unaware sometimes unable to do otherwise even if aware. I remember interest in straight lines and circles and shining lights so intense it overrides any notion of ‘wheels’ and ‘road lines’ and ‘headlights’.

They say ‘no initiative’ I think all the time I spent barely moved yet needed assistance waiting yet never got what I was waiting for because not moving meant to them empty-headed or stubborn. I think of also having different initiative than pleased captors.

They say ‘no sense of time’ I think of stare at object no sense of different between hour or day. I think random sleep. I think of moment passing without reflection. I think of barely even now grasping difference of past/present/future and my conception of the world being outside time.

They say ‘no body awareness’ I think of having other people touch to tell me where I am and how to move. I think of feel pain but not know where. I think of body as external sensation just as room is, cannot always differentiate pain or itching from a desk.

They say ‘bite self’ I taste it and see the bite marks on hands and arms.

They say ‘incontinence’ I not only know the feel but also the feel under neglectful circumstances and going everywhere instead of one place and sitting in it for hours if stuck.

They say ‘violence’ I recall caged-animal fear and lashing out and treated with more violence than I ever had the power to inflict.

They say ‘mind of a child’ and I see test results putting developmental so-called ages on what I can and cannot do, but never being those ages at the time.

They say ‘screaming’ I remember doing so until I lost my voice at home, in public, in institutions, or in other places.

They say ‘no emotion’ I remember emotions without usual expressions or not in the usual situations, being chastised for ‘inappropriate’ emotion.

They say ‘no personality’ I remember records stating I probably had severe/complex developmental disability prevented formation of cohesive personality.

They say ‘cannot dress self’ I think of prompting both physical and verbal, ‘cannot feed self’ and I think of help moving arm and when they move my arm wrong by accident and what malnourishment does to the body and mind with pain and irrationality and food-obsession. I think of being walked step by step through every activity of daily life starting not with “pick something up” but “here is how to move one body part, now here is how to move the part next to it, and the next one,” all the way through the task, collapsing in exhaustion several times throughout and having to start over, doing it wrong anyway, never getting it all done. I remember stopwatches and clipboards in futile attempts to teach me some of these things.

They say ‘no communicate pain’ I recall many urgent medical problems never mentioned even with adequate communication system. I recall also being told I was not in pain because no facial expression even in excruciating pain. I remember taught not to scream with broken joint. I recall 20 years of severe pain never diagnosed. I recall emergency workers (ignorant of auties) saying I must be on PCP because of total imperviousness to pain when fighting them.

They say ‘low functioning’ I see the records and hear the conversations that use this and many equivakent terms on me, not ancient history but a few years back. I see the bottoming on test results of ‘functioning level’. The expectation in people’s manner of my being not really here or thinking. The arguments about salvageability like I am a shipwreck.

They say ‘brain scan is proof’ I remember the proof that I had a ‘broken’ brain the brain scan used as ‘proof’ of so many things I was supposedly incapable of. I remember hearing people say “her brain beyond repair no sense helping her she is gone no longer a person didn’t you see her chart look at this look at this get her out of here worthless impossible to help nobody home” outside room I was strapped in.

When people use these stereotyped repetiton of words and phrases (non-auties do it too in both senses of the word stereotype!), or the photographs or drawings meant to evoke same, it is, bam-bam-bam, one in front of the other. Each one conjures up not fuzzy half-formed abstractions or images of other people, but real vivid immediate multisensory multidimensional concrete experiences from my life (not even the life of a person around me).

After that bombardment, people use it to justify things I find horrible, as if my mere existence is unthinkably awful. If I call them on it, well then there are the “But we don’t mean you” statements, the inability to conceive that these conjured-up constructs are more concrete and immediate for me than for them. If I try to explain these bombarded images and smells and sounds and feels and everything, my motives and emotional state and character become questioned and analyzed and demolished. (No I am not constant-angry, asking for pity, lying, or hating.)

But evoking these strings of experiences at me one after one after one and then barring my access to them and then using this to argue against everything I believe in is a lousy tactic. I do not need it explained patiently to me that my life and the lives of my loved ones exist, while simultaneously twisting meaning and value out of all of us and ending with “We don’t mean you” when so clearly they do.

How to suppress disabled people’s writing.

I have a book. I have to confess, I’ve never actually read the book. I’ve tried, but the language in it is difficult for me to understand. This does not prevent me from loving the cover of the book. The book is pictured here, but for those who can’t read it from the picture, it says:

She didn’t write it. (But if it’s clear she did the deed…) She wrote it, but she shouldn’t have. (It’s political, sexual, masculine, feminist.) She wrote it, but look what she wrote about. (The bedroom, the kitchen,her family. Other women!) She wrote it, but she wrote only one of it. (“Jane Eyre. Poor dear, that’s all she ever …”) She wrote it, but she isn’t really an artist, and it isn’t really art. (It’s a thriller, a romance, a children’s book. It’s sci fi!) She wrote it, but she had help. (Robert Browning, Branwell Brontë. Her own “masculine side.”) She wrote it, but she’s an anomaly. (Woolf. With Leonard’s help…) She wrote it BUT…

And the title of the book is How to Suppress Women’s Writing by Joanna Russ.

Not having managed to understand more of the book than the cover, I’m not going to comment extensively on the book. But for this post, I’m going to concentrate on the ways I see my writing, and other people’s writing, suppressed constantly, before it even gets to all those “buts”. The “She didn’t write it” part seems to be where a lot of people get stuck with us.

She didn’t write it, because someone was touching her when she “wrote” it.

This is the standard argument against facilitated communication. If someone touches us to help us write things, then obviously it is the person touching us who wrote them.

She didn’t write it, because she wasn’t looking at the keyboard.

See my last post for in-depth information on that myth.

She didn’t write it, because her speech sounds different from her writing.

People often assume that speech and writing should be congruous, and that if writing is somehow more articulate than speech, or contradicts what is said in speech, then it is the writing that is suspect. Speech nearly always trumps writing in what is believed of us. So, if we have speech that goes on autopilot while we write, or if we say the opposite of what we write, it’s our speech that’s believed.

She didn’t write it, because she was just being exploited.

This is one I get a lot, especially in the offline world, especially if I’m saying something simultaneously with someone who gives off a lot less of an air of cognitive impairment than I apparently do. What happens is, while people may accept that I am doing the mechanical act of writing, the assumption is that I didn’t come up with any of the ideas. I got all the ideas from another person, who is exploiting me for their own uses. The interesting thing about this one is that I can actually be the one coming up with some of the ideas, but the other person gets blamed for putting these same ideas into my head.

So, none of my ideas are really my own, they’re just other people’s, exploiting me, supposedly. That’s how the theory goes. I am just the poor innocent pawn of these evil nasty exploiters. And I’m supposed to feel protected by this rather than insulted???

She didn’t write it, because… just look at her!

I don’t quite get this one, but I’ve seen it a lot. Apparently only people who look a certain way can write. Especially, people who look like we might be cognitively disabled, particularly severely cognitively disabled, can’t write, apparently. Not that I’m totally sure what that looks like, but I know I’ve been told that I look like it. So, all you have to do is look at us, and you know, that we didn’t really write what we wrote. Because people who look like us can’t write. End of story, no need for proof or anything.

She didn’t write it, because she can’t be educated enough to write like that.

There’s two assumptions in this. One, that all people of certain sorts didn’t get an education. That one isn’t true. Two, that all people get educated in the same way. That also isn’t true. Donna Williams had a really scattered education until adulthood, and she writes books. Other auties speak of being integrated in regular education even when they didn’t show standard signs of comprehension. And many of us learn in non-standard ways.

She didn’t write it, because she has a mental age of 18 months.

Being able to score well on an IQ test, and being able to write, are two different things. I know of many eloquent writers who scored anywhere from slightly low to very low on IQ tests. I know of several accomplished university students who only discovered they had low IQ scores after they had already gotten advanced degrees. The notion of “mental age” is a meaningless abstraction of the ability to do IQ tests in a certain way.

She didn’t write it, because she writes better than I can, but she’s a retard.

I’m using the offensive word ‘retard’ in here for a reason. It’s an appropriately offensive name for an appropriately offensive sociological category a lot of people get put into. I don’t happen to believe that anyone matches the thought that is in people’s head when they say ‘retard’, no matter how they do on IQ tests. But it is a thought they have in their heads, and it comes into play a lot in these situations. If a so-called ‘retard’ does better than they do at something, that throws their whole mental construct of the world off. So it’s easier to say that we are not really writing. But, no matter how many people think retard at us, it doesn’t mean that some of us can’t be more eloquent writers than some non-disabled people.

She uses an interpreter, so the interpreter is really the person doing the talking.

This happens to me a lot, because I use a cognitive interpreter. That means, someone who is intimately aware of my body language and use of language, as well as my background, who can take a posture and a word or two and elaborate it into what I really mean. I can tell the person at any time that they’ve gotten it wrong, but having such an interpreter can be vital to a communication process because of my trouble with word-finding and other people’s trouble with reading the cues I give off.

Of course, the job of interpreting for me also has a problem attached to it: Quite often the things that I am saying with my body language are things that people want to ignore, as much as possible. A good interpreter will be able to see those and elaborate on them. Like the time my interpreter walked into the room and saw me huddled into a corner terrified of the two staff who were trying to talk me into something, and who told them exactly why I seemed cooperative. They wanted her to leave the room, convinced she was putting words in my mouth (or at least as she said things they didn’t want to hear), even as I said “No, she’s right, she’s absolutely right, let her stay.”

There have even been times when people saw the interpreter, who told them rightly what was happening in my head underneath the appearance of passivity, as a threat, and insisted that I was just fine until the interpreter came in. If I get angry at that, my anger is a sign of the interpreter’s “disruptive” presence, and they try to get the interpreter to leave so they can badger me into submission in peace, or something.

Another problem is the invisibility of my body language and other subtle signals to most non-autistic people. Because they can’t see me as having body language, I am assumed to have none, and the interpreter is assumed to be pulling interpretations out of thin air. Rather than, the interpreter can see what signals I send and is correctly interpreting them. Obviously, if particular non-autistic people can’t see my body language, then nobody can. Or something.

At any rate, when I use an interpreter, what the interpreter says is often not believed, even though the interpreter is often telling them exactly what I am thinking, and even though I always tell the interpreter if she’s getting something wrong.

* * * * * Anyway, I wrote this as an outgrowth of one of the comments on my last post. Someone had asked me, “Why is it that people don’t listen to us about things like how we type?” I am pretty sure the answer lies in the above: They don’t think that we have anything to say, and they don’t think that we actually wrote anything, therefore there’s no way we could have written anything worth listening to, at that.