The Autism Diva recently posted an article about an autistic teen who is advocating for reform of the same special education system that he himself ended up in. Someone posted a response to the effect that he is inspirational, not for reason of inspiring people to action, but for reason of having overcome a lot to get where he is today.

I wrote that while I could not speak for him, I doubted his intent was to inspire through his story, but rather to highlight an unjust system.

I had reason for what I wrote (some people think I respond to the word “inspiration” the same way in all contexts and am merely being hypervigilant here, and that is not true). Some of it is summed up here in John Kelly’s Inspiration.

This is the bad faith of the inspirational story: that which we overcome is what has been done to us in the first place.

But what’s interesting to me here, is not so much the meaning of disability inspiration, which I can discuss another day, another time. But the vehement reaction of people who say they were “inspired” by something (in this individual sort of manner), and who are then told “You know what, this might be the wrong way to look at it.”

The reaction I got this time, was basically “I guess I’m not intellectual enough for around here, sorry for wasting your time, bye.” And then coming back later to say that, regardless of what anyone said about me, the person felt scolded by me, and that they were glad of everyone who “defended” them against me, and that I was basically calling them stupid and a terrible person and a lot of other things I never said. They provided more and more detail showing that, in fact, my conception of why they said “inspirational” in this context was quite accurate. But I was not supposed to say so, I was supposed to agree the more detail they gave that in fact they did not mean it in exactly the way they kept saying they meant it.

That they viewed my comment as something that needed defending against, reminded me of this quote from Cal Montgomery’s article Project Cleigh:

For those of us who encounter these incidents over and over and over, they aren’t isolated. They’re a pattern. They’re a pattern perpetuated (often unthinkingly, but unthinking does not necessarily mean okay) by people who see the little reminders that we are not as good as regular folks as entirely normal. Entirely natural. Entirely justified. And they’re a pattern that has a tremendous effect on our lives.

Like members of other groups who face regular reminders that they have their places and should stay in them, our attempts to convey to other people what the problem is seem to them like weird acts of discrimination against them, because we are trying to deny them their right to degrade us over and over again. “I didn’t mean it that way,” they say, or “You have to understand.”

That’s exactly what seemed to happen today. The comments I got when I tried to explain the problem seemed to often come from the viewpoint that I was oppressing someone else, or at the very least, that I was overreacting. (How “I don’t think he meant it that way” was an overreaction, I don’t know. I could have gone into a lot more detail and still been justified.) That my own attempts to convey these ideas were bad enough that they needed to be defended against.

But the sheer level of hurt defensiveness in the responses is what is unnerving to me. Elsewhere in that article, Carol Cleigh (the article’s named after her, and the author of the article describes her as inspiring in a non-problematic way, as in “inspired to action”) describes having a door ripped painfully from her hand by someone trying to “help” her. When she tried to do something about this situation, the door-grabber responded with yelling and physical violence.

I do not think the person I am talking to right now would have resorted to violence. But — and I am sure this is to her evidence that I’m calling her a bad person again — the same mechanism seems to be at work here. The extreme defensiveness that Carol Cleigh encountered, seems to spring from the same source as the extreme defensiveness that I and others encounter among people who feel like we are infringing on some sort of sacred right of theirs when we talk about the problems of certain kinds of “inspiration”.

I use a wheelchair. I can’t speak. I don’t always have access to the ability to type, particularly when people are grabbing at me. Grabbing the arms of a wheelchair without permission is the same as grabbing somebody by the shirt and dragging them around or holding them in place. It’s a form of assault to grab someone’s handles without permission. Normally my only possible defense against this kind of assault is to calmly reach around and pull the person’s hands off my chair, without even hurting them, then go on with what I was doing.

One time, I did this and the person erupted. She started screaming and crying. She talked about what an awful person I was, and how she was only trying to help. I was (I was not in a setting with a lot of power) made to apologize to this person for hurting her feelings so badly, but they saw no need for anyone to apologize to me for grabbing and immobilizing me.

The message in all of this is: It doesn’t matter if we cause actual immediate physical harm to you. It doesn’t matter if we cause physical pain. It doesn’t matter if we restrain you. It doesn’t matter if we assault you. It doesn’t matter if we say things that are themselves linked to an entire way of thinking that causes great harm to you and everyone like you. What matters is that you not hurt our feelings by trying to defend yourself, pointing out what is happening, or other actions meant to protect you or others like you.

I doubt that is actually the message anyone is trying to send. I do not think they think of themselves as assaulting us, as holding viewpoints that cause us great harm, and so forth. And I think that in itself is where the problem lies. When we point these things out, politely or bluntly (and as an autistic person I don’t even have access to anything but bluntness in my communication repertoire), they think we are striking at something deep in their self-concept as good people, and turning them into terrible people. That, I am almost certain, is where the bulk of the extremes of defensiveness are rooted.

I’ve posted before about the confusion between “doing good” and “being a good person” that a lot of people have. I think there’s an opposite side of the coin, in which “doing bad” is considered “being a bad person”. These are natural ways to think about things, and I think nearly everyone does think that way from time to time, but they’re ways that should be resisted. As human beings, we all do things that are right, and do things that are wrong, and do things that are a mix of the two.

But it is not even a wrong thing to do, to react to or point out prejudice, or actions that come out of prejudice, or an unexamined sense of superiority, or anything else like that. These things need to be pointed out. Pointing them out is not the same as calling someone a bad person, and reacting as if it is, is just one more way to ensure that the bad kinds of prejudice (and there are bad and good kinds, people would not survive long without any prejudices, but there’s a bad side to that fact) stay entrenched and defended. I am glad that people have pointed things out to me at times, rather than letting them slide. It may not feel good, but there’s more to life than feeling good in the short term.

There’s also a profound difference in what’s at stake. For disabled people, in the situations I have described, what is at stake from the prejudices and actions of others is our safety, our value as people, our health, and at times our lives. Even things that seem like mere insults, are actually often reflections of prejudiced attitudes that can mean life or death for us. For non-disabled people, having this pointed out to them, what is at stake is their hurt feelings at the mistaken impression that we are calling them bad people for contributing to these things. (Of course, there are disabled people who buy into these things, and non-disabled people who don’t. For all I know, the author of the article is not personally insulted by being called an inspiration for what he’s done, but since this is not just about his personal feelings either, it’s still relevant.)

It shouldn’t be a mystery, then, when I choose to point out these things. Given what’s at stake. And why I choose to stand by what I have said. What I am writing though is not just about today, not just about this one situation, and not just about me.

People reading this can choose to take it as me calling them bad people (and once you take that perspective, it’s not hard to view me as piling insult after insult after insult and being generally mean and nasty), or they can choose to take it as me calling them people. People (including disabled people) tend to be raised with a large number of prejudices against disabled people, and tend to act on them, and these end up having dire consequences for disabled people overall, and forming a pattern even if the people doing it can’t see the pattern, so mentioning this is in a way pointing out the obvious. But it’s also very necessary — without mentioning it, all that would happen is things would continue. Someone pointed out to me yesterday the assumptions I was making about him, and while it was certainly confusing and unpleasant at the time, I ended up having to eat my words. So it goes.

When I became more heavily involved with the medical system, an interesting shift of terminology occurred around the way my life worked. It was now divided into normal (something that was never even named), and “episodes”.

Episodes were varied. The word seemed to refer to:

• Seizures.
• Meltdowns.
• Shutdown.
• Periods when I moved very slowly or not at all.
• Loss of speech.
• Motor or vocal tics.
• Behavior that other people could not explain.

For instance, if I got overloaded during an appointment, and curled up and hummed, that was not overload, that was “an episode”. If I took a walk and seemed oblivious to things, that was not an autistic person taking a walk, it was “an episode”. If I freaked out and started screaming, that too was not overload, it was “an episode”. If I tried to run away from captivity, that was not a normal response to such a situation, it was “an episode”.

I’m not sure how to convey exactly how sick I got of hearing “Amanda had an episode today.” Or “Amanda had a [fill-in-the-blank] episode today.” It seemed like almost overnight my life had become a series of notes people were taking on my behavior, and the bar was always far too high, resulting in frequent meltdowns and shutdown, resulting again in this episode crap on the part of everyone who was dealing with me.

What I needed was not for people to endlessly discuss these things, and not to treat them as if they were “bad” in some way and needing to be eradicated at all costs, but to actually grasp them as something integrated into my life. Episode denotes something separate from ordinary life, and these things are part of my ordinary life, they’re seamlessly integrated into it, yet everyone wants to denote them as something else. Something different. Something separate from me and my life.

To have people taking notes on these things, recording them, putting me under a microscope, talking to each other about them, only involving me insofar as I would go along with what they wanted… this was not useful.

These days, I run around blogs and I see people using terms like episode, dysregulation, and other very clinical-sounding terms to describe and understand themselves or their children. And then I see things like Danny’s Episode with Abnormal Movements, and I can relate too much to Danny, both in what he is doing (that sort of thing happens to me regularly) and the way others are describing him (which enrages me).

I cannot, just cannot, imagine my parents running after me with a camera on a day like that. I have a lot of days like that. On a day like that I want to be helped to lie down — which will take effort — and then covered with heavy blankets if possible. I can run around so much that I start getting asthma attacks, otherwise, and then I can’t control movement enough to use an inhaler, so it’s serious. I don’t want the kind of saccharine “caring” I sometimes get on those days, but I also don’t want to be chased around with cameras.

I just keep wondering, for Danny, and for other people who are still being described in these ways that separate off these portions from our everyday lives and medicalize them, how they feel about being described this way, how it shapes their conception of themselves, because it certainly screwed with mine enough when I was a kid. There’s got to be other ways to handle things like this than to treat them in this medical, detached-from-the-person way.

Short post: I just found ALUG. And joined. And thought others might be interested.

Okay, my last post seems to have confused at least one person.

It was based on the sort of thing like Questions for Heterosexuals.

So an explanation:

How have you learned to compensate for being nearly incapable of directly perceiving your surroundings?

That one stems from the fact that autistic people’s, in fact all disabled people’s, strengths are usually regarded as compensation for our weaknesses. Also, there is an assumption that if we have an area of weakness, we will develop superhuman powers to “compensate” for it. And people often make assumptions about what our weak points are without finding out first.

Since neurotypicals (people whose neurology is the standard-issue variety, not autistic, not other things either) also have specific weaknesses in cognition, I thought I would show how ridiculous these assumptions are, by turning it around and asking a question of a neurotypical person regarding an assumption about their weak areas.

A documented autistic strength is the privileging of perception over some other kinds of cognition, meaning that, overall, we are more likely to perceive certain aspects of our surroundings accurately. Non-autistic people tend to have this same perception canceled out more often by other areas of cognition, and to be less able to turn those other areas of cognition off to see what’s in front of them. Hence, “nearly incapable of directly perceiving your surroundings” used in a pejorative way above, to mirror how autistic weaknesses are described and generalized in similar ways.

I am not serious. I do not think that neurotypical strengths happen because of neurotypical weaknesses, any more than I think that autistic strengths happen because of autistic weaknesses, nor do I think either one is superior to the other in value. Nor do I think of things in such absolute terms, these are trends. But in showing how ridiculous this kind of thinking is when applied to autistic people, I am applying it to neurotypicals, who will of course see it as ridiculous or even insulting, because they are not conditioned to view themselves the same way autistic people are conditioned to view ourselves.

Why do you think your life is worth living if you don’t have an intense area of interest? Don’t you miss it? Are you in denial or something? Don’t you understand this is a fundamental aspect of the human condition?

“Intense areas of interest,” by the way, are often seen as “compensations” for “lack of social skills” (a viewpoint that may not even be exactly accurate about autistic people, any more than “lacking an intense area of interest” is always true about neurotypicals).

Autistic people are always asked whether we miss certain things that we don’t have. Some of these things, we don’t have because of discrimination. Some of these things, we don’t have because we’re autistic. Some of these things, we don’t have because we just plain don’t want them.

But in any case, we are frequently asked how we manage without various things. If they are things that we don’t have because we’re simply not interested, our neurological makeup does not push us in that direction, etc, it can seem ludicrous. If they are things that we don’t have because of discrimination, and people are assuming that we don’t have them because of who we are rather than how we are treated, then it’s merely irritating.

This goes beyond autistic people of course. Here is a blogger applying it to disability in general, in Q: What’s your problem with people talking about how horrible it must be to be disabled?. I get these sorts of questions because I am autistic, because I use a wheelchair, because competitive employment and I don’t get along, because I speak through a keyboard, because I need assistance with things the person asking the question doesn’t need assistance with, and the list just goes on and on. Sometimes I have gotten it based entirely on my appearance, explicitly based entirely on my appearance (which people characterize as looking “severely retarded” or “profoundly autistic” or some other such thing, both of which they for some bizarre reason translate as meaning less happy).

As Laura Tisoncik (who is autistic, and uses a wheelchair because of a pain condition related to scoliosis surgery and a bad knee) has put it to me, “I don’t understand why people think it is a sympathetic thing to say to come up to me and tell me they’d rather be dead than be like me.” Believe it or not, both she and I get that comment a lot from people who do imagine themselves to be sympathetic.

Anyway, then people spring the “human condition” thing on us regularly. The “human condition” is defined of course by a non-disabled, non-autistic reality. Is it any wonder many autistic people grow up wondering if we’re actually human? I was flipping things around, showing neurotypicals how it might feel to have the “human condition” defined by something that only some of them do or even want to do.

How do you deal with your dependency on social information? Have you done anything to reduce that dependency? If not, why not?

Everyone is dependent on other people for various things, it’s just that non-disabled people’s dependence is just viewed as The Way Things Are instead of as dependence. Read Critic of the Dawn for more on this.

Most non-autistic people depend a good deal on social information to show them things about the world that many autistic people pick up on our own. There is nothing wrong with this at all.

Most autistic people depend on other things, or on other people but for different things, and this is usually viewed as wrong, even tragic, and our desire to “reduce our dependency” is taken as a given. But, like non-autistic people’s dependencies, there is nothing wrong with them.

I am, yet again, flipping things around. Non-disabled people take for granted that nobody will see them this way. Autistic people end up taking for granted that people will generally see us this way. Thus, again, I’m making you (non-autistic people) think before you say these things to autistic people.

Surely you must miss the all-encompassing joy of simple perceptual experiences. Don’t try to tell me that all your canned, pre-filtered experiences of sunsets and the like hold a candle to watching a tiny spider crawl across the carpet or rubbing a fuzzy blanket on your face. Nobody would believe anything that ridiculous, you’re just trying to romanticize neurotypicality.

Now I’m not saying here that autistic people can’t enjoy sunsets. This is another stereotype. (This entire thing is based off stereotypes, because the questions autistic people ask are likewise based off stereotypes.)

But the joy and beauty that autistic people find in the world, in different ways than neurotypicals generally do… when we describe it, we are often dismissed as romanticizing autism, as just searching for things to be good about autism but the things supposedly don’t really compare to the joy and beauty that non-autistic people find in the world.

Blind and deaf people get this too, by the way, from people who assume they can’t experience the true beauty in the world if they can’t see a sunset or listen to an orchestra. It’s no more true of them than it is of autistic people. I used to get this not about being autistic but about being stuck in bed while very ill. People assumed I couldn’t get anything out of life then, either, but I got different things out of life (some of which people who have to move around all day, even the extent that I do now, can’t experience).

So this is what it’s like to have your experiences of joy and beauty treated as if they are merely inferior versions of another person’s experiences, ones that you might not in some cases be able to have to the same extent as this other person.

How do you feel about being most likely to give birth to children who have your own limitations? Don’t you think that’s irresponsible?

People with inheritable conditions, including ones that are only sometimes inherited, are asked this all the time, provided the condition is a devalued one. There was even a news anchor with a genetic condition causing fused fingers and toes who sparked nationwide debate by getting pregnant. Read From ‘Passing’ to ‘Coming Out’ and A Simple, Unquestioned Fact for one disabled woman’s experiences during pregnancy and after the birth of her child.

Most neurotypical people will give birth to neurotypical babies. Neurotypicals do have limitations, too. Thus, the above question. If you don’t like it being asked of you, don’t ask it of us.

How do you compensate for your inability to perceive body language? What do you mean, you have a kind of body language of your own? Nobody’s buying that, that’s just silly. Science hasn’t proven that.

Autistic people have body language, and many of us can read body language (like our own, or different). But both of these things are denied a lot of the time, or regarded as “unproven,” as if we have to wait for science to prove something in order to say anything about ourselves.

Many neurotypicals cannot read autistic body language. Hence the above first question. But also hence the second question. They believe that we do not communicate through body language, this is even codified into the criteria for autism, and they believe this because they can’t read our body language.

This is exactly identical to an autistic person being unable to read neurotypical body language, and thus concluding it doesn’t exist. Except neurotypicals have the power to define autistic people and the opposite is not true.

How do you deal with being unable to perceive minds different from your own? Doesn’t that limit you socially?

Autistic people are widely regarded as lacking theory of mind, the ability to understand that other people have minds. (Even though recent research that Morton Gernsbacher’s been talking about a lot, is showing that the way theory of mind tests are administered to us is the bulk of the problem.)

In fact, especially by adulthood, we are usually adept at not only dealing with the fact that other people have minds, but dealing with the fact that other people’s minds work in ways that are in parts vastly different from our own.

On the other hand, when many neurotypicals look at us, they often wonder if we have minds at all (hence “empty shell” being a common description of us, and as if we have had our minds kidnapped or stolen, and so on and so forth), which points to an inability to see minds that work very differently from their own or that inhabit bodies that move very differently from their own.

So… again, turning things around.

Have you considered LSD for your perceptual deficits? If you haven’t, don’t you think it’s just a little bit ridiculous to say you’re against all parents giving LSD to their children? I know you talk about distorted thinking, hallucinations, sensory overload, and other minor side-effects, but isn’t that a small price to pay for being able to perceive the world more directly? Don’t you want to enjoy a normal life, or at least have the next generation able to enjoy one? Aren’t you just a tad rigid? You shouldn’t apply your experiences to everyone you know, every child is different.

It has been my direct observation that people on LSD start doing things that I do when I’m not on LSD. It has also been my direct observation that for a long time I was perceived to be on LSD even though I wasn’t.

Autistic people are often prescribed neuroleptic (also known as “antipsychotic” even though that term is not strictly the case) drugs to make us superficially look more like non-autistic people, whether “for our own safety” or for purely cosmetic reasons. Neuroleptic drugs are even more dangerous, in terms of the potential for brain damage long-term, than LSD is. (LSD can cause brain damage, but not the same type and extent.)

People generally agree, even if they believe LSD should be allowed for consenting adults (and I believe both LSD and neuroleptics should be available to consenting adults, although I have no interest in either one), that LSD should not be given to children. But neuroleptic drugs, far more dangerous in nature, are routinely dispensed to children. LSD, by the way, used to be a “treatment” for autistic children, there were even studies showing its effectiveness.

So I was thinking, what if the world were populated by autistic people who wanted neurotypical children to act superficially more autistic (including stopping neurotypical behaviors that we regarded as highly dangerous in nature)? Simple, give them LSD. I am sure the rationale would run that it helps them perceive the world like us, or corrected a chemical imbalance in their brains that made them different from us, even if it really doesn’t.

Autistic people who complain about the use of neuroleptics (which have a permanent brain damage rate that approaches 100% the longer you are on them, which are explicitly non-approved for use in autistics by the FDA, which autistics are far more susceptible to some of the negative effects of, and which are far more dangerous than most drugs, so these are not just “minor side effects”) are usually told that we are just expanding our experience to fit the experiences of most people who are not like us, that parents have a right to put anything in their children’s bodies they want to, that children who get neuroleptics get them for “severe behaviors”, and so forth. (I was a child who was given neuroleptics without my consent for “severe behaviors” that far exceed the behavior most people are talking about, I had a lot of vocal and motor tics, and I still do not think it would have been justified except possibly as a short-term anti-emetic, so these arguments don’t go very far with me.)

So I’m applying these arguments to something that most people agree on: Giving children LSD to make them act more autistic, even to stop dangerous but common neurotypical behaviors, is probably a bad idea. (It also illustrates the ridiculousness of the “But it’s a last resort” argument — if you wouldn’t give LSD to your kids as a “last resort,” why neuroleptics? Some things are not any legitimate resort at all, last or otherwise, at least for people who are too young to consent.)

What? You’re against LSD in children? I bet you just want to let kids have seizures, too. Would you deny a diabetic his insulin?

This has to do with the fact that when autistic people criticize the use of neuroleptic drugs (the APANA site has a lot about that, by the way) we are often characterized as “anti-medication” in general. I don’t know how many times I’ve gotten angry emails from people who think that I mean children should not be given medication for seizures. And the insulin comparison is ubiquitous and goes back to the pervasive myth of the chemical imbalance corrected by a drug. (Whenever a drug seems to “work” on a certain kind of behavior or feeling, it’s assumed the person had a “chemical imbalance” to begin with that the drug “corrects”, even if there’s zero evidence for this.) The insulin comparison is often started by psychiatrists, by the way, who want to persuade someone or their parents to take something.

Whatever your beliefs about neuroleptics in autistic people, our concerns about them shouldn’t be trivialized by either calling us ‘militants’ or the above sorts of arguments.

Speaking of which, you shouldn’t be saying that behavioral therapy is a bad way for neurotypicals to learn. I know that you say you have your own ways to learn, but we have all this proof that we can at least make you indistinguishable from your autistic peers. Don’t you want that? If you’re indistinguishable from your autistic peers in your every movement and word, then how can you continue to claim you’re not autistic?

Autistic people are told that behavioral therapy is “proven” to work for autistic people. The “proof” being that some autistic people are made “indistinguishable from (non-autistic) peers”. When we say that even if an autistic person passes as non-autistic, they are still autistic (and possibly suffering a lot in their attempts to pass), we are told that autism is behavioral in nature. And that anyone who can pass (sometimes only slightly) for neurotypical is not really autistic.

If this is true, then flipping things around means that if a neurotypical is trained to act autistic, then they’re really autistic. Which is just as ridiculous as its opposite.

Don’t you think you ought to stop speaking for all the severe neurotypicals out there? They’re different from you, they can’t even carry on a proper conversation with an autistic.

Severity of autism is measured by how well we are able or willing to conform to non-autistic standards of behavior and communication, not necessarily to “how autistic we are”. It certainly doesn’t mean most of what people say it means.

So here, I am using severe (or low-functioning) neurotypicality to mean the same thing. Neurotypicals that I just happen personally to find difficult to communicate with. Ones who can’t seem to avoid making large numbers of annoying assumptions, using language in ways that are hard for most autistic people to comprehend, and who do not communicate with autistic people or acknowledge our communication even when we are trying very hard to communicate with them.

(The term “high functioning neurotypical”, for NTs who “get it” about autism, has been floating around since when I was on IRC years ago.)

By the way, Michelle Dawson has cited some research about how non-autistic people simply don’t respond to autistic people’s communication efforts a lot of the time, because they can’t see them. While I’d never really divide non-autistic people into high-functioning and low-functioning based on things like this, the temptation is occasionally there.

Have you learned to make real conversation with strangers instead of just measuring them up socially and moving on?

A common non-autistic stereotype of autistic people is that we cannot make “real” conversation because our conversational methods are different than theirs. I hope the reversal makes sense.

Why do you think you should have any say in the treatment of neurotypicality? You can’t be saying you want to let it fester untreated. You know what can happen then, and besides when you want to learn about a disorder, you go to a real expert, not someone with the disorder.

Autistic people know intuitively a lot of things about living as autistic people, that take scientists years or even decades to uncover, when they’re even things that can be measured by scientists.

Yet our observations about autism, and our assertions that being autistic is too deep a brain difference to make removing it good or even truly plausible, are treated as if we should have nothing to say on the subject. The same goes for our observations about the ethics or science of various “autism treatments”.

We are supposed to leave these opinions to the “experts,” and we are not “experts”. Even when we do attain the status of psychologists, or researchers, or other autism professionals, we are told that our opinions are solely generalizations from our own personal experiences.

We may even be told that our opinions of our personal experiences are wrong. I was once told that the things done to me in institutions would not constitute torture unless a psychiatrist approved of that label. They would easily constitute torture if done to political dissidents, although they too would have a hard time, in their society, proving it, because torture is nearly always done by the (politically) strong to the (politically) weak.

All of the above things, at any rate, have been said to autistic people. Turning them around to apply to non-autistic people is just as ridiculous… etc.

How can you say that neurotypicality is not devastating? Lots of autistic parents feel devastated by their neurotypical children. Can’t you understand that means it is devastating, even if in your one solitary single case you don’t think it is?

I’ve been told that it was okay to say, on national television, as part of a PR campaign for an organization, that autism was devastating, because it validated the feelings of some non-autistic parents of autistic children. And that if I, personally, was not devastated, well then, that’s just me, personally. Sorry, try again.

I feel so sorry for you, you poor thing. I have no idea what it’s like to have such awesome limitations. You’ve overcome a lot just to be able to talk to me, I’m sure.

Pity for being who you are doesn’t feel good and doesn’t do anything good. Describing everything in terms of “overcoming” doesn’t either. Etc.

In the book Pride Against Prejudice, which is well worth reading, Jenny Morris quotes a list of assumptions by Pam Evans. They are assumptions about disabled people. She notes that it’s important to state these explicitly, despite the fact that non-disabled people often try to deny their existence:

That we feel ugly, inadequate, and ashamed of our disability.

That our lives are a burden to us, barely worth living.

That we crave to be ‘normal’ and ‘whole’.

That we are aware of ourselves as disabled in the same way that they are about us and have the same attitude to it.

That nothing can be gained from the experience.

That we constantly suffer and that any suffering is nasty, unjust and to be feared and retreated from.

That whatever we choose to do or think, any work or pursuit we undertake, is done so as ‘therapy’ with the sole intention of taking our mind off our condition.

That we don’t have, and never have had, any real or significant experiences in the way that non-disabled people do.

That we are naive and lead sheltered lives.

That we can’t ever really accept our condition, and if we appear to be leading a full and contented life, or are simply cheerful, we are ‘just putting a good face on it’.

That we need ‘taking out of ourselves’, with diversions and rewards only the normal world can provide.

That we desire to emulate and achieve normal behaviour and appearance in all things.

That we go about the daily necessities or pursue an interest because it is a ‘challenge’ through which we can ‘prove’ ourselves capable.

That we feel envy and resentment of the able bodied.

That we feel our condition is an unjust punishment.

That any emotion or distress we show can only be due to our disability and not to the same things that hurt and upset them.

That our disability has affected us psychologically, making us bitter and neurotic.

That it’s quite amazing if we laugh, are cheerful and pleasant or show pleasure in other people’s happiness.

That we are ashamed of our inabilities, our ‘abnormalities’ and loathe our wheelchairs, crutches or other aids.

That we never ‘give up hope’ of a cure.

That the inability to walk, to see or to hear is infinitely more dreadful than any other physical aspects of disability.

That we believe our lives are a ‘write off’.

That words like ‘walk’ and ‘dance’ will upset us — as if people who’ve endured what we have endured have fragile sensibilities.

That when we affirm that we cannot, or do not wish to do something, our judgement and preferences are overridden and contradicted as inferior to theirs.

That we are asexual or at best sexually inadequate.

That we cannot ovulate, menstruate, conceive or give birth, have orgasms, erections, ejaculations or impregnate.

That if we are not married or in a long-term relationship it is because no one wants us and not through our personal choice to remain single or live alone.

That if we do not have a child it must be the cause of abject sorrow to us and likewise never through choice.

That any able-bodied person who marries us must have done so for one of the following suspicious motives and never through love: desire to hide his/her own inadequacies in the disabled partner’s obvious ones; an altruistic and saintly desire to sacrifice their lives to our care; neurosis of some sort, or plain old fashioned fortune-hunting.

That if we have a partner who is also disabled, we chose each other for no other reason, and not for any other qualities we might possess. When we choose ‘our own kind’ in this way the able-bodied world feels relieved, until of course we wish to have children; then we’re seen as irresponsible.

That if our marriage or relationship fails, it is entirely due to our disability and the difficult person this inevitably makes us, and never from the usual things that make any relationship fail.

That we haven’t got a right to an able-bodied partner, and that if they happen to be very obviously attractive, it’s even more of a ‘waste’.

That any able-bodied partner we have is doing us a favour and that we bring nothing to the relationship.

That we can’t actually do anything. That we ‘sit around’ all day ‘doing nothing’. Sitting seems to imply resting so it is presumed we get no ‘exercise’.

That those of us whose disability is such that we require a carer to attend to our physical needs are helpless cabbages who don’t do anything either and have nothing to give and who lead meaningless, empty lives.

That if we are particularly gifted, successful or attractive before the onset of disability our fate is infinitely more ‘tragic’ than if we were none of these things.

That we should put up with any inconvenience, discomfort or indignity in order to participate in ‘normal’ activities and events. And this will somehow ‘do us good’.

That our only true scale of merit and success is to judge ourselves by the standards of their world.

That our need and right to privacy isn’t as important as theirs and that our lives need to be monitored in a way that deprives us of privacy and choice.

That we are sweet, deprived little souls who need to be compensated with treats, presents and praise.

She points out that Ruth Bashall, a disabled lesbian, adds that there’s an assumption that disabled people can’t be gay or lesbian, and that if we are it’s because we had no hope of a ‘normal’ relationship. And Nasa Begum, a disabled Asian woman, adds that there’s an assumption that “it is our ethnic culture which restricts our lives as disabled people and that ‘we should be grateful for the services we receive in Western societies, because we wouldn’t be able to get them in our own countries.'”

A note to the person who assumed my responses were “bitter” — it’s interesting how that word is usually chosen. Someone once pointed out how “angry black woman” rolls off the tongue (for some people, anyway) in a disturbingly easy manner. For other people, “bitter cripple” or “bitter disabled person” rolls off the tongue just as easily. “Bitter” is a word used to describe us, for reasons that I don’t totally understand, whenever we address injustice too directly, regardless of our real personalities.

One disabled woman asks, in a forum:

How can I be more assertive and quit letting people step all over Me without coming across as a bitter cripple?

Simply put, her problem is not “coming across as a bitter cripple,” but the fact that assertive disabled people are automatically viewed that way at all, just as assertive women are often viewed as “bitches”. “Bitter” and “bitch” and “angry” and so forth become personality traits ascribed to us, and negative ones at that, rather than people acknowledging that maybe we’ve got a point.

Carolyn Gage has written a list of dos and don’ts called So You Know a Dyke with CFS. It’s on the Internet at that link. It’s also in a very interesting book called Restricted Access: Lesbians on Disability.

Two of her don’ts are:

DON’T attribute your lack of sympathy to my attitude. This is a standard defense of bigots. Racists are always sure that there are right ways to be African American and wrong ways. Sexists believe that harassment and discrimination only happen to women with bad attitudes. Ableists are always convinced that there is something in the attitude or the behavior of the disabled person which is causing their own irritation or aversion towards us. Nothing unmasks your ableism more than this point of view toward me.

DON’T accuse me of being jealous of your health when I confront your ableism. I wish that my able-bodied friends were more aware of how their able-bodied privilege translates into ignorance, arrogance, and bland sadism. The issue is not my envy of your privilege, but your abuse of it.

In other words, people often tell her that when she runs up against a barrier, or a problematic attitude in other people, then it’s something in her own attitude that’s causing the problem. Disabled people are often pressured to be more sweet, calm, and nice than most non-disabled people would be under the same circumstances, because when we encounter unfair treatment, we will be considered jealous of other people’s ability, bitter about being disabled, or some other thing that blames us for what people do to us.

Note two of Pam Evans’s listed assumptions again:

That any emotion or distress we show can only be due to our disability and not to the same things that hurt and upset them.

That our disability has affected us psychologically, making us bitter and neurotic.

I would add a sort of combined one, that any emotion or distress we show can only be due to our status as “bitter”, and not to the same things that would bother other people, certainly not to any legitimate reason.

The purpose of the humorous “questions for neurotypicals” (and they were intended to be funny) was to illustrate that neurotypicals would probably feel the same about being described that way, and questioned that way, as we do. They just don’t always notice it when it happens to us, because it’s the sort of thing that is acceptable when done to us but not to them for some reason.

I know of a non-autistic guy who was mistaken for autistic at a conference, and he was barraged with questions like “Do you have a girlfriend?” He was utterly stunned by the experience of having a microphone shoved into his face and being asked such a personal question, whereas autistic people take such questions as almost inevitable. The point of the last post was to give other people a taste of that experience, while at the same time making them laugh at the absurdity of the whole thing.

The point of this post is to explain the last post in more depth.

Many of these things can be, and are sometimes, reduced by others into a matter of hurt feelings. Bad, maybe, but not horrible, not dangerous, nothing that truly needs changing in the world.

The problem is that it is not only our feelings that are hurt by things like this. It is our entire lives that are changed by it, and the lives of all autistic people are profoundly and badly affected by the assumptions contained in these sorts of questions. Some autistic people die because of these assumptions. They are not trivial.

Cal Montgomery has written two articles, and promises more to come, in what she calls Project Cleigh. Carol Cleigh is a disability rights activist who responds every time someone confronts her with what Cal calls ‘little acts of degradation’. Cal has made a New Year’s resolution to be a little more like Carol Cleigh. Here are two of Cal’s articles on the topic: Little Acts of Degradation and Project Cleigh: Dare to Resist. (If those links were identical earlier, try again.)

She notes that while these things seem little, they are not all that little at all when combined and turned into a constant barrage that disabled people encounter every day. She notes that ‘unintentional’ does not mean ‘okay’ or ‘harmless’. She notes that some disabled people are ‘housebound’, not because of their physical limitations, but because they can’t deal with going out into a world that throws this at them all the time. And she, and her readers, point out many of the consequences of these things, that other people don’t tend to foresee. If you read any two links from my entry today, read those two.

Note: This is not my actual attitude to neurotypicals (I’m using that term specifically because it’s more precise than non-autistic here). But it mirrors the way autistics are often addressed.

How have you learned to compensate for being nearly incapable of directly perceiving your surroundings?

Why do you think your life is worth living if you don’t have an intense area of interest? Don’t you miss it? Are you in denial or something? Don’t you understand this is a fundamental aspect of the human condition?

How do you deal with your dependency on social information? Have you done anything to reduce that dependency? If not, why not?

Surely you must miss the all-encompassing joy of simple perceptual experiences. Don’t try to tell me that all your canned, pre-filtered experiences of sunsets and the like hold a candle to watching a tiny spider crawl across the carpet or rubbing a fuzzy blanket on your face. Nobody would believe anything that ridiculous, you’re just trying to romanticize neurotypicality.

How do you feel about being most likely to give birth to children who have your own limitations? Don’t you think that’s irresponsible?

How do you compensate for your inability to perceive body language? What do you mean, you have a kind of body language of your own? Nobody’s buying that, that’s just silly. Science hasn’t proven that.

How do you deal with being unable to perceive minds different from your own? Doesn’t that limit you socially?

Have you considered LSD for your perceptual deficits? If you haven’t, don’t you think it’s just a little bit ridiculous to say you’re against all parents giving LSD to their children? I know you talk about distorted thinking, hallucinations, sensory overload, and other minor side-effects, but isn’t that a small price to pay for being able to perceive the world more directly? Don’t you want to enjoy a normal life, or at least have the next generation able to enjoy one? Aren’t you just a tad rigid? You shouldn’t apply your experiences to everyone you know, every child is different.

What? You’re against LSD in children? I bet you just want to let kids have seizures, too. Would you deny a diabetic his insulin?

Speaking of which, you shouldn’t be saying that behavioral therapy is a bad way for neurotypicals to learn. I know that you say you have your own ways to learn, but we have all this proof that we can at least make you indistinguishable from your autistic peers. Don’t you want that? If you’re indistinguishable from your autistic peers in your every movement and word, then how can you continue to claim you’re not autistic?

Don’t you think you ought to stop speaking for all the severe neurotypicals out there? They’re different from you, they can’t even carry on a proper conversation with an autistic.

Have you learned to make real conversation with strangers instead of just measuring them up socially and moving on?

Why do you think you should have any say in the treatment of neurotypicality? You can’t be saying you want to let it fester untreated. You know what can happen then, and besides when you want to learn about a disorder, you go to a real expert, not someone with the disorder.

How can you say that neurotypicality is not devastating? Lots of autistic parents feel devastated by their neurotypical children. Can’t you understand that means it is devastating, even if in your one solitary single case you don’t think it is?

I feel so sorry for you, you poor thing. I have no idea what it’s like to have such awesome limitations. You’ve overcome a lot just to be able to talk to me, I’m sure.

Last year, I went to the emergency room at the same time as someone else: Both of us were asthmatic and both had been exposed to some sort of really nasty toxin that was a byproduct of the construction process in our building. (Right after we had been assured by the housing authority that everything was safe in here. I have never had breathing problems as bad as that, or anything that felt even remotely like that, even when I inhaled smoke once in a kitchen fire.)

Anyway, we eventually got our medical records from that visit, to show the housing authority so they would relocate us somewhere breathable.

It was very interesting. My records claimed that I had a history of severe scoliosis and allergies to medications that I am not allergic to. I think her records noted allergies to medications that I am allergic to, as well as other elements of my medical history. In other words, despite the fact that they seemed to question us each separately and enter us into the computer separately, they got all the data jumbled. That is scary.

Scarier is that I’ve seen other of my medical records. They often mess up things as routine as what city I live in. Sometimes they confuse me with other patients. Sometimes they add fictional bits of medical history that never existed, sometimes they leave out things that did exist.

Some are undoubtedly deliberately fudged.

I have on tape a description by a tester of fudging an IQ test so my weak points would not show up, which has me even more convinced that IQ testing is not as “objective” as people claim it is.

On a more sinister note, I have the records of the time I experienced attempted murder by neglect, and things were clearly charted in such a way as to make even the medications I was given at the time look much different, more according to procedure, more innocuous than they were. (When they did not succeed in allowing me to die the first time I had an obvious dangerous reaction to a drug, they gave it to me a second time “just to make sure” and told me that they would give me an antidote if I would agree to do what they told me in other areas. Records of that time document a slow increase in that medication (never happened) until an adverse reaction happened and it was discontinued (not quite).)

I’ve seen instances in which what they told me was not what they wrote down. When we had the breathing problems, they talked all about how they could hear the big difference in lung volume after breathing treatment, and exactly what was going on and stuff, but when they wrote it up they wouldn’t mention things like this, although they would sometimes exaggerate what we said about what we were planning to do about all this. In that case, since it was tied to a somewhat high-profile controversy in the area, I suspect they were covering their asses (one doctor even explained to us that he couldn’t write something a certain way because although he believed it was that way, he was afraid if it showed up in court he wouldn’t be able to prove it 100%, because there is no way of proving that particular symptom 100%), but it doesn’t make it right.

I have also had people invent elements of my life that don’t exist, as if out of thin air.

I once had a case manager write in my file that I was working for my landlord in exchange for rent. I never did anything like that so I don’t know where she came up with it. She also fabricated diagnoses out of thin air, and claimed I’d told them to her, when I’d never heard of them before. On the other hand, the diagnoses she was faxed by my doctor, for physical problems, were disregarded in favor of her imaginary diagnoses and of psychological problems. The most bizarre part was that she said all of this, and all her other distortions of my life, were what I had told her. I had told her nothing of the sort. She didn’t like me, though, and I think that was a lot of what happened. She told me not to be so confrontational before I’d had a chance to type a single word to her. She seemed to not be responding to reality much at all.

But others just seem accidentally, but dangerously, careless.

Switching around elements of my medical history and the history of the woman who came to the emergency room with me is bizarre and dangerous but probably not deliberate.

A lot of the factual errors are probably similar. Stuff that people got confused.

But what disturbs me is that medical records like this are taken as more factual than anything else. Clearly, from my experience and others, they can be either deliberately fudged or unintentionally screwed up in other ways. Yet medical records are supposed to be some kind of reality. They are sometimes treated as more real than real. This is strange.