The Schafer Report, by the way, is going away.

But there was something I wanted to bring up about an old issue of it, that I never got to say quite how I wanted to.

It’s part of In Defense of Behaviroal [sic] Treatment for Autism, the old smear campaign against Michelle Dawson, that attacked the idea of autistics wanting or being able to communicate, in order to discredit her, and us, without having to actually take on our arguments.

Here are some of the things that were said in that report.

One of the first articles said things such as this, and many have echoed the idea:

…autistic people would not, by definition, be interested in a career in communication…

…even as they behaved in ways that a person with autism would never choose to do (seek public speaking opportunities, seek recognition, constantly communicate, etc.)…

Autistic people, as he is defining us for his convenience, do not communicate, do not seek out opportunities to communicate, do not have any interest in people, and so forth. Even though these things are proven false, that’s what’s printed in this edition of the report.

Some of the other articles acknowledge that some autistic people communicate in words, but that, for instance:

Suppose you were the individual who, without treatment, was destined to be standing alone in a corner of an institution, dependent on everyone around you to take care of even your most basic needs, rocking perseveratively and eliminating in your clothing, unable to sample what life has to offer. Would you like someone who could speak and could interact in the everyday world speaking on your behalf and counseling against treatment? No, I wouldn’t either.

In that case, the person has decided that it’s mainly bad if autistic people who can talk (or write) say certain things about autism or autistic people.

So it’s okay if we talk, we can remain autistic then, but it’s not okay if we say certain things.

And then, after all this, commentary by parents and professionals to the effect of either “Autistic people can’t communicate” or “Autistic people who can communicate should only stick to certain topics,” here comes the following, which is printed without any hint that the person is not autistic:

David Corbett was very animated with him and asked him about his autism, to which he replied by stretching his arms out really wide, “I used to have a lot of autism now I just have a little (he brought his hands close together to show a little), but I want to have none (to which he dropped his hands down to his side and told them that dropping his hands meant zero).

David asked him about a letter he had written and gave him a copy of it. David asked him if this was his letter, he said “Yes, and I’m working on making my printing better!” David asked him if he had given his letter to the government, he replied “Yes, I took it to the government that lives close to our house”.

David then asked him if he would please read his letter for the court, which he did with great pride.

David then thanked him and told him it was a great letter! David asked him if he had worked hard himself, and he said “I worked very hard, though Mom says that I got rid of the autism myself by working hard, I needed my tutors they helped me a lot, I wouldn’t have been able to get rid of most of it without my tutors”. He continued, “It takes a long time to get rid of it, it just doesn’t happen quickly, it’s not fair to take the teachers away just because they are six”.

So, in that case, an autistic boy not only communicated, not only spoke out loud and wrote, but went into a court room and engaged in public speaking.

And nobody in the Schafer Report questioned that he was autistic. Bobby Newman did not say, “He can write, he’s not autistic enough to speak for these children.” Jenny Ladew did not say, “He hasn’t raised an autistic child while juggling a family and career so he has no right to comment.” James Mulick did not say “He is not autistic, because he speaks, and real autistic people would be uninterested in public speaking.” Lenny Schafer did not call him an “Asperger imposter”.

Because if you say the right things, nobody’s going to question you.

As I was writing this, another thing came up that’s somewhat related to my last statement.

The Autistic Bitch from Hell wrote On Authenticity, about a rumor she heard (I don’t know how substantiated of unsubstantiated) that someone in the autistic rights movement is not who they claim to be, is in fact a journalist working on a book. She further writes that it’s hard to want to say anything, because the person could do us a favor with the coverage.

I wonder if this is another instance of “If you say the right things, nobody’s going to want to question you.”

Marty Murphy, a middle-aged speaking autistic woman, posed as a 25-year-old non-speaking autistic man, and was defended by many people because of her message. I was offended by the fact that, as a 25-year-old non-speaking autistic person myself, the stereotypes of the sort of person I am were being exploited to send a message I would never send. A lot of “autism is evil” types were fine with her deception, and still are, because they think it’s the message that counts, not the deception.

Is it really any better when one of us turns out to not be who they say they are? I mean, I’m hardly the Autism Police (I in fact usually detest that form of policing), but if someone is not who they say they are (and I don’t know enough of the facts to know for sure), and lots of us protect them, how is that better than people protecting Marty Murphy just because they liked her message? If we are enraged by other people doing that, should we really be doing it?

I do think there is a difference between choosing what to say and what not to say, and the fact that all words are in essence lies — and the act of deliberately deceiving people about a major aspect of who we are, by deliberately lying. Some of us hide certain aspects of our lives, sometimes for good reason. Some of us also say things that people take wrong.

For example, I am frequently represented as having spent my entire childhood in an institution, as never having spoken in my life, and as only having been in one institution, usually people assume the kind reserved for developmentally disabled people. In fact I only spent part of my childhood in institutions, I spent time in several of varying sizes and shapes and with varying kinds of people inside, and I have produced plausible-sounding speech sounds with my mouth in the past. Some people view me as misrepresenting myself when they find this out, or even as lying about events in my life, but it’s usually more a matter of the fact that I’m not going to tell my life story every time I meet someone, and my life story defies enough stereotypes that people’s initial assumptions are likely to be wrong. It’s simply too complicated to give out every nuance every time I talk to people, and I am aware that people assume all kinds of things that I don’t have the time to correct them on. If I cannot now speak, have spent time in institutions and say so, and did so in childhood, people fill in the blanks with the rest.

But there is a difference between all that and saying that we really are unemployed when we have jobs, or other sorts of deliberate lying. Posing as an autistic person when you’re really a non-autistic journalist is different than either not having the exact words for the truth or choosing which parts of the truth to tell.

And I don’t see any difference between that and Marty Murphy.

I have said in many earlier posts that the world needs all kinds of people in it. I quoted my friend, who said that training her to be like everyone else would be training her to be a true misfit: She already has a place in society, and she benefits from learning how to most effectively use that place. Dave Hingsburger has written that the most important thing in life is finding who God wants you to be, and trying your best to be that person (I know not everyone reading my blog is religious, but I think even non-religious people can understand the idea).

I am reading a book called Leo Strauss and the Politics of American Empire by Anne Norton. It’s a very interesting book. I read it after a friend read a book by a Straussian, drastically changed her outlook on life, and started attending a school with a curriculum that comes highly recommended by Straussians. (The book I am reading draws a clear distinction between Strauss and Straussians. The author was taught by many Straussians, but is not one herself. She is trying to chronicle their origins, their beliefs, and their influence on American politics.)

In one part, she describes the Straussian aversion to postmodernism. I have an aversion of my own to much of postmodernism (and I actually regard Straussian philosophy as highly related to it), and to the forms of moral relativism that say for instance that if something is done in some culture then it’s okay (there are many things taken for granted in my culture that I think are absolutely wrong), but I agree with what Norton says in the following passage:

Derrida’s reading also suggests, more disturbingly, that the fulfillment of one set of responsibilities may demand the sacrifice of others. If doing one duty requires us to neglect other duties, if cultivating one virtue requires the sacrifice of others, then an all-encompassing perfection is beyond us. Each of us will be dependent on others to repair the duties we neglected. Each of us may someday be faced with someone who cultivated a virtue we sacrificed. I think that is something most of us are all too ready to acknowledge. Perhaps the danger lies in what follows. If this is true, if we do, if we must, sacrifice some virtues in cultivating others, then we must acknowledge that there is more than one good and honorable life. Some call this “moral relativism,” and it makes them angry. I call it a simple recognition of the limits of a human life, and I take some comfort in knowing that the duties I could not fulfill and the virtues I had to sacrifice will show themselves in others, where I can depend on and admire them.

My own belief is that if everyone were the same, society would cease to function. We need generalists of various kinds, and specialists of various kinds, and all kinds of brains and bodies and minds, in order for society to work. And I do take comfort in knowing that there are people who can do things I can’t, who are good at things I am not, who are doing those things.

My friend (after reading Allan Bloom) told me at one point that she had to divorce herself from the autistic liberation movement, because some of the ideas were too hooked up with postmodernism, in a bad way, and she could see what postmodernism was doing to society, and it was dangerous.

I remember holding a conversation once with someone in the medical profession, online. I was saying how most people who are born with no arms are better at using their legs, than using clumsy and uncomfortable prosthetics. But how the medical profession often forced them on such people anyway.

The doctor became very angry with me. He told me in no uncertain terms that I was a dangerous moral relativist postmodernist something or other, and that these ideas would ruin the practice of medicine. He told me that at least if you gave people prosthetic arms you were giving them a chance, and who would withhold that chance from a child. He didn’t seem to think that, even after the child got old enough to say something, the child should have any choice in the matter. It was sick, to him, to want to use your dextrous feet instead of clumsy fake arms.

I have a videotape called Vital Signs: Crip Culture Talks Back. It includes clips from a performance by Mary Duffy. Mary Duffy is a performance artist who is, conventionally, stunningly beautiful. And she has no arms. She poses as the Venus de Milo, naked, in one of her performances, and says to the audience:

You have words to describe me that I find frightening. Everytime I hear them they are whispered or screamed silently wordlessly from the front to middle-page spreads of newspapers. Only you dare to speak them out loud. I look for them in my dictionary and I only find some. The words you use to describe me are “congenital malformation.” In my child’s dictionary I learn that the first part means “born with”. How many times have I answered that question? “Were you born like that? Or did your mother take them dreadful tablets?” How come I always felt ashamed when answering those big staring eyes and gaping mouths? “Did you have an accident? Or did your mother take them dreadful tablets?” With those big words those doctors used, they didn’t have any that fitted me properly. I felt even in the face of such opposition that my body was the way it was supposed to be, that it was right for me, as well as being whole, complete, and functional.

In an interview, she describes her experiences with the medical profession as a child:

…I felt I’d been objectified by the medical profession in general, and I wasn’t able to talk back. And particularly about how they made decisions and comments about my future as if I wasn’t there. And speaking to a dictaphone and describing my future as if I was incapable of comprehending.

Then she concludes with:

Today I’m winning battles every day against my own monster, my inner critic, who has internalized all my childhood oppressions. The oppression of constantly trying to be fixed, to be changed, to be made more whole, less visible, to hide and to be hidden.

The idea that Duffy is whole, without arms, and does not need fake arms, does not need to be changed into someone who appears more normal (even if functionally it’s all wrong), was threatening to the doctor I spoke to. He was angry at me. Very angry. Disproportionately angry. My ideas were, he thought, tied into a whole philosophy. A philosophy I actually don’t buy into. But he couldn’t see these ideas as part of a different view of the world than the one he was attacking.

Anne Norton talks about how there are many ways to be good and honorable. I think that some people mistake that idea, with the idea that there is no way not to be good and honorable, that everything everyone does is right. But that’s not what she was saying. She wasn’t saying “Everything everyone does is right.” She was saying “There’s more than one way to do the right thing.”

People make a similar mistake when autistic people, or disabled people in general, argue that there’s nothing wrong with the way we are made, that everyone is valuable, regardless of disability, that the ways disabled people do things are different and it is right for us to do them in this different way.

They think that we are saying, “Disabled people are exempt from the process of growth that all humans go through.” And they deride us for it.

They are wrong.

The world is not a set of clashing philosophies, and the world does not need to be reconciled to a philosophy. Trying to do so, will leave out important parts of the world. The real world is not a fight between postmodernists and modernists, that stuff all seems to me to be a clash of words in the air, and I always feel like I’m left sitting on the ground wondering why all the words high in the air are seen as more important than what is right in front of me.

What we are saying, is that disabled people have a place in the world, and that our place in the world, and how we fulfill it, how we move, how we think, is going to be differently shaped in some ways than other people’s places in the world. There is more than one way to be. It does not mean that all ways are correct.

When I write things, it is easy to take what I say as “All ways are correct,” sometimes. I never mean that. I never mean that if a parent chooses to enroll their child in the Judge Rotenberg Center, I will ever agree with that decision, because I won’t.

I never mean that autistic people, or any people, should be neglected and left totally alone forever.

But I find it very interesting that people think I mean that.

People are very adept at raising non-autistic children without trying to force them into autistic ways of operating. But most are stunningly bad at raising autistic children without trying to force them into non-autistic ways of operating. So they interpret “Don’t make someone non-autistic” as “Don’t raise someone, just ignore them.” They literally don’t know how to raise an autistic person as an autistic person, so they assume that raising an autistic person as an autistic person is not raising them at all.

I read an article recently that condemned “postmodern” practices in special education, right alongside its condemnation of Nazi eugenics policies. (It also condemned facilitated communication. I really liked the article, which was about the genocide of disabled people, until it went down that road.) I looked up the references and “postmodern” practices apparently include believing that society has to change in order to include disabled people, which is equated with not teaching disabled people anything about the world.

This puzzles me. Does the addition of ramps to buildings mean that people don’t learn how to move their wheelchairs? It’s illogical to equate the two so rapidly, but people seem to do so. People regard acceptance of autistic people similarly: “Oh no. We can’t have people flapping their hands in public. What would happen next, not teaching them anything at all?”

I’ve used the analogy of trees before. Ever try to get an oak to look like a counterfeit redwood? It injures the oak, prevents the oak from growing the way oaks are supposed to grow, and doesn’t look a thing like a redwood. What if we had a whole viewpoint that only redwood-like growth was growth and all other growth was really just stagnation? There need to be lots of kinds of trees, and there need to be lots of kinds of people, it’s that simple.

I don’t know, though, how to enter words properly into some of the more ridiculous-seeming debates that go on, debates that are clashes of words, clashes of professional egos, clashes of a lot of things. There’s something going on underneath all these words, there’s a way things should be, that can’t be articulated in words, ever.

But there are many ways to do the right thing, many bodies and minds that are the right way to be, and this is not nonsense or moral relativism or any of that other crap, it’s just how things are. This doesn’t mean that there aren’t wrong ways to do things, it just means that there’s not only one right way.

A little background on how and when I was told that.

I was dealing with the San Andreas Regional Center, an agency whose real job is to withhold as much funding from disabled people as possible (I’ve even heard this from people who’d worked at the Regional Center), but who pretend to be about great humanitarians who fund us as much as possible. And hold big dinners about how wonderful and selfless they supposedly are. And so forth. But that’s a tangent.

The main background information they had on me was either:

• Obtained from an hour-long interview with a relative who was under pressure from the interviewer to answer in certain ways and not others.
• A few pages of diagnostic information from a psychiatrist.
• Their own impressions from seeing me.
• The inventions — out of her ass or something, I can’t figure out where else she would have gotten some of those “facts” — of a bizarre and scary case manager.

Needless to say, this was not a lot of information. In the meantime, I had a letter. The letter was from someone who’d known me for a long time and had been my primary caregiver recently. She knew a lot of things about me that would be missed by people hurrying by with diagnostic information and such. She condensed the most important things into a letter, sent from her position as an officer in an organization for helping autistic adults with daily living issues, and sent it to the Regional Center.

The letter contained more accurate information, by far, than people could have gotten from the other things. It contained a reasonably accurate assessment of my strengths and weaknesses and the kind of assistance I needed.

Anyway, at one point I told someone from the Regional Center, “Don’t look at the other stuff. Look at the accurate stuff. Look at the letter. It’s the most important one in there.”

The response, “Oh, so that’s the one that tells us what you want us to hear, I’ll bet.” Or something similar.

As if wanting them to hear the truth was a problem.

What kind of “service” are agencies providing if they trust the opinions of people peripherally involved, and trust short interviews and such and bizarre inferences, more than they trust the most likely source of accurate information?

And what kind of “service” are they providing if they refuse to see that what is important to me might just be the most accurate stuff?

I remember a video I once watched. Part of it featured a woman whose disability theory I’m not always fond of, because she has built it entirely around certain physically disabled people and left the rest of us out. But she said something important.

She said that disabled people are seen as manipulative, as needing to be pushed by non-disabled people into doing what’s right for us, as unable to understand that on our own.

Often we are seen as manipulative when we are only trying to run our own lives. Often when we do things that would normally be “manipulative”, what we’re doing is doing all we can under a system of power that prevents most other self-expression. But often, we’re just “manipulative” whenever we do something someone else wants, “unaware” whenever they want to emphasize that it’s their way that matters.

To SARC, who I am mercifully free of now: Yes, that was the paper that told you what I wanted you to hear. I wanted you to hear it for a reason. I wish you had listened instead of making power play after power play. I’m a real human being with a life, too, you know, and I bet you’d want accuracy and power in your own life too if our situations were reversed.

I’m reading around in some rather disgusting American eugenics literature for historical purposes. I have found a letter from Mary Dendy to Karl Pearson, dated 1912, that reads partially as follows:

Imbeciles – It is difficult to find a definition of these which does not apply for low-grade Feeble-minded. They may be described as low-grade F.M. who are not able to be taught the proper care of their persons and whose habits require constant attention. They are apt to be excessively restless, to “echo” (i.e. repeat words instead of answering them.) They are occasionally destructive and apparently cruel, though it is probable that their acts of cruelty are due not to an instinct to give pain, but an instinct to destroy. If able-bodied they can be taught to work, i.e. to repeat the same movement over and over again, in a purely mechanical manner. They often use repeated movements of some part of the body quite without purpose, as striking the head rhythmically with the hand. Their articulation is generally very defective and they sometimes have little or no speech.

She describes “low-grades” as “sometimes having special mental gifts, but more commonly low-grade all round”.

Hmm. It always amazes me when I run into this stuff and remember that some people actually believe that autistic people didn’t exist until Leo Kanner. We were — some of us anyway — spread out among a number of classifications of “mental defectives”, which is what they considered a broad range of people back then.

You were the ones who watched how we moved, then said what that must mean. You wrote that we lived in closed-off worlds, rejected all contact with the world outside. You wrote this when we did not react to things the way you expected, you even wrote this when we had reflux that caused us to vomit our food, it was all rejection of the world outside. You defined us based on what you imagined to be our isolation. You looked at us and you saw only your imaginings of what life must be for us, then you defined us based on your imaginings.

It’s tempting to say you couldn’t help it. You’re for the most part non-autistic. Non-autistic people’s brains really do work more that way than autistic people’s brains do. You are more likely to superimpose your imaginings over the real world, and to sustain that superimposed version of things. But it’s not just that you couldn’t help it. It’s that you were the non-defective ones and that gave you the power and the right to define us, the defective ones, on the basis of your superimposed mental hallucinations.

Part of our role in society is to be a counterbalance to those hallucinations, to have clearer perception of things you can’t see through the images in your head, just as part of your role in society is to do all the things that your thought-shortcuts free your minds up to do. But that part of our role in society has been denied for a long time, like the roles of so many others you don’t seem to have room for, so your mental hallucinations continued to take precedence, and we continued to be defined according to how you saw us through your mental hallucinations.

“Even though non-autistic people may hate or fear or pity us for being different, I think they really need us to be just the way we are. We’re the ones who notice that the emperor isn’t wearing any clothes.” -Jim Sinclair, What Does Being Different Mean?

You saw us as unaware of our surroundings. You saw us as unaware, particularly, of people. You saw us as encased in a bubble world totally separate from you. It’s kind of a strange thing to hear from people who have much more wiring enabling them to live in their heads to the point of rearranging their perception of the world around them, than we do. But again, you had not only those particular biases but you had the power to inflict those biases on the rest of us.

So now you come along and say that if someone has relationships with others, they are coming out of autism. You say that autism is defined by a shell that you hallucinate around us. Even if they had relationships all along that you were unable to see. You come along and say that we’re in these enclosed worlds, and it’s your job to come in and get us out, but you’re oblivious to the much more enclosed worlds you tend to live in, and oblivious to how much of the world we do perceive. You come along and basically say that anyone who can talk about it isn’t autistic, anymore, or isn’t very autistic anymore.

But you’ve defined autistic along your parameters. You have defined it, not in terms of how we actually work, but in terms of what you guys have been imagining all along to be inside us. Then you made the rules based on what you imagined rather than what was there.

And now you’re writing books, to be read by many people around the world, that may as well all be your imaginings. You write very well. You write deceptively well. It may take an autistic person, maybe an autistic institution survivor in parts, to see through what you have written, what you have gotten yourself to believe about us, what you are telling others to believe about us, what you are telling others to believe about you. What you are telling us to believe about ourselves, which is the scariest part.

Take a look at what your ideas about autism have been founded on: Mental hallucination on top of imagining on top of bad inference on top of mental hallucination stacked for decades. Take a look at the assumptions you have made. Take a look at alternate explanations for what you have done to us, for what we have done to you. Have faith that even if everything you thought you knew about us falls apart and leaves you totally confused, who and what we are is still going to be here and will be easier to see. And then maybe you’ll be able to actually listen to us and hear something other than a distorted reflection of yourself.

Part I: Why I’m writing things this way

I’m having trouble getting the words out any other way. Zilari, of Processing in Parts, has convinced me it’s possible because of xyr reply in the On Being Different post in 29 Marbles. But so much of the lines are scrambled that it’s going to be interesting getting the concepts in and out. Language is not doing what I want it to do right now. I am going to try to write this in pieces.

I am using myself as an example in many of these merely because I am near at hand and it is more difficult for me to observe things that are not near at hand right now. I should probably clarify that I am again not asking for “emotional support” or strange sympathy-esque emotions that make no sense, I’m trying to illustrate points.

Part II: On universality of attitudes

I once said I knew an autistic guy, been to many countries, he said it showed him how many different ways there were to do things.

I haven’t been to very many countries. But even in different parts of the United States I have seen many different ways of doing things.

I have been places where nobody bats an eyelash at my appearance and I have been places where people call the police at the mere sight of me.

I have been places where the way I act is seen as normal and the I have been places where the way I act is seen as way the heck not normal.

In the society that lots of people pretend is the only one, there is no way I am seen as normal, there is no way I do not face a lot of prejudice just based on my appearance, etc. In the society that lots of people pretend is the only one, the only thing kind of normal about me is the fact that I can use language, the rest of me looks very odd.

But I’ve been other places and I know better than to think this is all there is.

I know it is a false idea that people like me are always shunned to the degree we are where I live now. Your own society is never the whole of human nature.

Part III: On whether autistic people are “deliberately” this way

Personally I do not pass for non-autistic. I just don’t. There is nothing about me that screams normalcy unless you get me in an environment where stereotypically autistic-looking people are accepted to a larger degree (these environments do exist).

But it is true, a lot of autistic people can pass. But passing requires a lot of energy. For some autistic people, passing means not eating. It means being in constant unrelenting physical pain. It means in the end not functioning and not surviving. Our brains are built to function in an autistic way, not a non-autistic way. This is what we do.

We cannot just swap out autistic and “normal” behavior and have the “normal” be better for us than autistic. The autistic part has a reason.

As I type this, I am rocking, violently twisting, grimacing, finger-flicking (yes, while typing), and squealing. Does this look strange? Yes. Could I type this without doing that? No. I would be curled up in pain and banging my head on something while screaming. Is that better? No. (I am not sure I will not end up that way in a few minutes frankly.)

Yes, some people have more ability to pass than I do. But should someone be penalized for choosing to rock at a point when I cannot choose not to? I don’t understand why. I don’t understand why I guess we are being split up into deliberate and not-deliberate.

Part IV: On making an effort

Let me tell you something about effort.

If I let go right now on the iron grip I have on effort, I would instantaneously lose all ability to use the language I am typing and reading. I would perceive my surroundings as an array of patterns of color and texture and pitch and motion. Language would be switched entirely off. The whole concept of things existing that are not in my immediate environment and time would not exist anymore, nor would time. Movement might be iffy. It’s frankly tempting right now because the effort is pretty bad, and once I’m done with this it’s quite likely that I will lose momentum and slide into it involuntarily, if I don’t voluntarily give these things up first.

I obviously view communication as a high priority at the moment to divert all that energy into it.

Diverting this energy into communication means that I cannot control my body posture. I cannot control the noises my mouth is making. I cannot control how weird or normal I look. I am having trouble controlling the words I use to the degree of precision I would prefer and a lot more is getting lost in translation than I would like. I have just run and lurched and spun and crashed on the floor and rolled around and got up again in the middle of writing this. I am not kidding and this was not voluntary, this is a system trying to compensate for the fact that I am putting so much effort into one thing that I am stretching a lot of limits.

This is all for writing something, alone, in my apartment, with only a dog and a cat for company and no stressful input except possibly from my computer screen.

It takes this much effort to do this. It takes even more effort to do more non-autistic-friendly things, such as exist in a world that is not designed for us in the slightest. When I am interacting with people, I am putting immense effort into understanding and responding to them. I may be putting more effort into it than most non-disabled people have to put in except in crisis situations.

And I’m quite often, despite all this, seen as putting no effort in at all and in fact being rather lazy. Because no matter how hard I work I am never even close to the accepted standard of normal. It is just plain inconsiderate of me to have a body that moves and responds and perceives the world the way mine does.

Part V: On deliberateness being wronger than not being able to help it

In most cases, especially when the behavior is simply considered unsightly, I don’t get it.

Is a woman who is bald because she’s just more comfortable that way more wrong (especially when people yell “dyke!” at her) than a woman who is bald because she has had chemotherapy? People often stare at bald women (well, in some places they don’t, but in some places they don’t stare at autistic people either) and avoid them and think they’re strange. Is the woman who’s comfortable that way just bringing it on herself?

If an autistic person really could suppress rocking but doesn’t want to, is that worse somehow than an autistic person who cannot suppress it? Is the first person just bringing it on themselves when people call them a retard, bar them from certain facilities for “disturbing the customers”, etc?

Is an autistic person who is okay with who they are, automatically “choosing to be autistic” and therefore responsible for what other people do to them? Would it be better if I acted very pitiful and did the whole “I sure wish I could help it but I can’t” routine and prayed for a cure openly and publicly?

Part VI: Fitting in socially vs. fitting into society

Society would not be what it is if everyone in it were the same. The typewriter in my room would not work if it were made entirely of screws and nothing else.

A lot of people want to mold autistic people — and other neurologically atypical people — into shapes we are not. By shapes we are not I mean to try to recreate us in a non-autistic image because that image is more pleasing to non-autistic people. The same has been done to many other people, for instance paraplegics have been forced to walk badly using braces and crutches rather than use an “unsightly” wheelchair, blind people have been prevented from using Braille and cane travel because they were seen as “stigmatizing” by sighted people, and deaf people have had their hands tied behind their back because their “animalistic” way of communicating with each other was seen as evil and wrong and bad.

Disabled people of all kinds do operate differently.

Disabled people of all kinds do need to operate differently.

And disabled people of all kinds have a place in society.

Having a place in society is not the same thing as “fitting in” on a superficial social level and having everyone like you. Sometimes your place in society is to be the person that people don’t necessarily like but you’re serving a function whether they like it or not. Society needs a certain amount of autistic people and people with all kinds of different brain and body configurations, whether we’re liked or not, whether we’re accepted or not, we’re necessary. And not just again on a superficial level of someone else’s gauge of what is productive contributions to make.

Part VII: On accepting the consequences

The consequences for me are not trivial. But they do not strike me as just “the consequences of being me,” I have seen enough places to know better. I know that these consequences are interactions between cultures and people and places and kinds of people and so forth, they are not just the “consequences of having this trait,” whether the trait is the inability to do something or the ability to do something or the way something is done or the way a person looks or anything else.

But I have a problem with the idea that I should accept the sort of “consquences” dealt with in Project Cleigh as if they are inevitable and right and so forth. I also have a problem with the idea that I should accept the various “consequences” that make it literally physically unsafe for me to go outside alone because of how many people react to my appearance.

I could and have for instance just by looking the way I do get sent to the emergency room and given drugs that I have life-threatening allergies to. I refuse to accept the idea that it’s okay or a natural consequence of looking like me that going outside alone is life-threatening, it simply does not make sense. Whether or not I have chosen to look this way. And choosing is not bad, but not having a problem with the way I look is not the same as being able to choose how I look.

The way I look doesn’t just get people looking at me funny, it gets people trying to figure out what group home I got out of and surrounding me and detaining me and doing other unpleasant things to me. It means that I have to have someone with me who looks “competent” just so that I will be seen as being “supervised” even if I don’t need “supervision”. It is dangerous for women to walk outside alone in some places (not where I live, but where I used to live) but that is not accepted the way the danger to me is accepted.

And it does not seem either inevitable or acceptable for things to be this way. Not inevitable because I have seen it other ways, not acceptable because people shouldn’t have to put up with this kind of thing, autistic or otherwise. I accept that it happens but I do not accept that it should happen and there’s a big difference there.

Part VIII: Trying to tie this together in words

Which I’m not going to do too well right now. I hope the parts I am getting through are making sense.

I have just realized that echolalia of a sort will do the trick. Here is a quote from a friend’s unpublished autobiography:

[in describing being good at saying and doing things other people wouldn’t dare to say or do]

This is of course an ability that carries with it a high degree of risk. From a perspective that sees persons as atomic — discrete units of mass and energy floating in a vacuum — my ability to take these risks is “pathological.”

But humans are not the classicist’s atoms floating in a vacuum: they are components of a society, an ecosystem, and a universe. There’s an essential social role for precisely this kind of risk-taker. This is the part of the puzzle where I fit.

If I were to try to “learn” to avoid these risks, what I’d really be “learning” is how not to fit into my natural role in society, how to be a true misfit, rather than an apparent one. I can’t benefit from “skills” that would turn me away from taking these risks, but I have benefited from everything I’ve ever learned that has made me better able to recognize and manage these risks.

This is where I think most attempts to “help” autistic spectrum persons fail. They start from the assumption that the person does not fit in, and then seek to twist the person into some imitation of normalcy — usually at the expense of the autistic spectrum person’s sense of self and self-esteem — rather than starting from the position that the person has a role, already does fit in as a critical edge piece of the human puzzle, and seeking to help them develop the tools they need to fill that role effectively. We don’t need the skills it takes to be “normal”; we need the skills it takes to be different.

I’d buy the idea that NTs have a real (and not merely a majority-rules) grasp of things social if I didn’t find myself reminding them that they live in a society as often as I do…

And I am very glad she wrote it, because it’s everything I’ve wanted to say in this post, only shorter and better languaged. We already have roles. We just need to learn how to best deal with the roles we have. And other people should not be treating us badly, and when they do it is neither inevitable nor because we should have been efforting more and fitting in in the “true misfit” way and everything else.

Now if you’ll excuse me I think I’m going to go do something very loud and conspicuous and socially inappropriate. That’s what trying to force a non-language brain into language mode will do sooner or later.

Someone recently posted something with so many assumptions contained within it that I questioned, that while I wanted to respond to it, I really couldn’t. It required too many word-angles at one time. One of those assumptions was about the attitudes other people have towards autistic people when we are seen in public, and how inevitable they are, and how they’re somehow the responsibility of the autistic people (especially if we like being autistic, and/or especially if we could suppress the difference but don’t, and it was difficult to tell if these two things were being considered the same thing or not, but it sure seemed like it at times).

At any rate, in response to part of that, instead of doing the thorough dissection I long to do (but lack the current language skills for), I’ll post a link to Project Cleigh: Dare To Resist! (they are even selling t-shirts now).

Project Cleigh is about those little acts of degradation that disabled people (among many, many other people) encounter on a regular basis. Cal Montgomery got a lot of responses to her original article on the topic, and has discussed them in her most recent (Dare to Resist) article. They’re worth a look. And she’s still collecting more submissions. (I just sent in a whole bunch today, although I have trouble distinguishing from little acts and big acts.)

I’ve been thinking a lot, lately, about the ways in which my autistic-style adolescence was pathologized, because there was no other view anyone around me knew to take of it. It was “regression”. And so forth. I had the kind of changes in adolescence that, I have read, you’re supposed to see a neurologist about. And I did. They had a lot of theories. Including some pretty scary ones. But they didn’t really know what was going on. I was growing up. Autistic style.

I wondered, when I thought about this, what would happen if ordinary adolescence were pathologized. I’d seen a bit of it when I was in the system with a lot of kids who were, for instance, locked up for things like being pregnant. (Not kidding. She got released when her pregnancy test turned out to be a false positive. Cleared of all diagnoses, too.) But I wondered, what if the natural changes and drama of the teenaged brain came to be seen as this horrifying regression that might kill the person and so on and so forth.

Then I read this article.

I guess I’m not surprised that someone’s gone and pathologized adolescence.

Something that amazed me about Tranquility Bay is that it encompassed nearly all the worst parts of institutions in stark detail. I don’t mean the physical punishment and solitary confinement. I mean the degradation refined to an art form. I mean the totalitarian aspects. The total lack of power. The brainwashing.

Those are the bad parts of institutions, and the parts that even all the sweetness and light versions of institutions never really get rid of, they just mutate in form, because an institution is an institution is an institution. Tranquility Bay isn’t a sweetness and light sort of place (even though the stupid names for everything are like that), but it’s still very heavy on the bad parts.

When Laura Tisoncik talks about being saved by bad insurance, this is part of what she means. The more expensive the place, often what happens is you get a clean pretty place that’s so overstaffed that they have the time and power required to truly mess with your head.

I remember once being offered a “choice” between a state institution and an idyllic-looking group home. The state institution had all the horror-film trappings of institutions, was loud and noisy and ugly and scary, but it was not very well staffed. The idyllic-looking group home was extremely well staffed, and all the restraints were on people’s minds where you couldn’t see or touch them. I chose the state institution. My choice was overruled by people who assumed I didn’t know what I was doing. I moved to the group home.

I have had staff try to kill me. I have been beaten. I have been tortured. I have been molested. I have had all of these things and more done to me in institutions. I am just relaying facts here, to illustrate a point, I don’t want sympathy. I would rather have all of them happen all over again and maybe also throw in being left to lie in my own piss and other “fun” things like that, than get sent to a place like Tranquility Bay, or like the group home I was sent to.

I can remember being taught to echo that my life was saved, too, in a position where I had much less communication ability around to resist than a lot of those kids do. Not that any of them really stand a chance in a place like that.

I wasn’t saved by that place.

I’m still trying to extricate myself from some of the invisible bonds placed on me in that beautiful group home. Despite many of the nightmares and flashbacks from other institutions finally starting to fade with time.

Brainwashing is not help. Teaching people unswerving obedience and to not think for themselves will create people who are, even if originally nondisabled, going to have a lot of difficulty functioning in society as adults. I wish I could say that I can’t believe that people were doing this, but in retrospect I think I used to know someone who was sent to one of those places.

I don’t think it’s worse that they pathologize normal adolescence than that they pathologize my kind of adolescence. But I do think it shows how far people are willing to go, and how out of touch some people are getting with the stages of life.

I just stumbled across the ASpar site again, and found the following in an explanation of the demographics of the ASpar organization:

We have had some people who said they were happy with their AS parents. However, these were less than 5 people, and all of these identified strongly as AS, are well known in the AS self-advocacy movement. They all have an obvious stake in not wanting an exploration of the negative side of AS. These members generally did not share their experiences, or offer support, but tended to chime in only to defend people with AS, and put the blame back on NT mistreatment of AS people. While it is historically true that AS people have indeed suffered enormous mistreatment because of their perceived “oddness”, nevertheless there was an unwillingness to accept that AS may create real obstacles to adequate parenting.

I joined the ASpar list when it was advertised merely as a group for people with autistic parents. It did not advertise itself as a group for people with negative experiences of their autistic parents, or a group for people who had no desire to understand their autistic parents but only to vent about how heartless they were, merely a group for people with autistic parents. I was interested in finding out how I might be perceived by any children I might have, as well as discussing my experiences with my autistic father, so I joined, not knowing what I was walking into.

I did in fact discuss my experiences and my experiences with my father. I even, contrary to the implication above, discussed both positive and negative experiences. I did not join the list with some agenda to prove that autistic parents are angelic and perfect, because I knew perfectly well that this is not true.

I did, however, have some interest in exploring the good side of autistic parenting styles. I had no idea that this would create the responses it did. I was told that my father must be “only very mildly affected” because he has things like compassion that are in fact present on all “ends” of the autistic spectrum (lacking compassion is simply not an autistic trait). I saw a fellow autistic listmember, who had done nothing more than treat people nicely, get asked, “You are so nice. Are you sure you are really autistic?” There was an actively skeptical and hostile mood toward the idea that any autistic person could be truly a nice person unless they were only mildly affected.

When I said that I could not handle these attacks on my father and on other listmembers, and the implication that “severity of autism” has anything to do with niceness or compassion at all, that in fact I found these things offensive and insulting, I was told that I needed to allow people space to vent because this was a support group.

I was stunned that personal attacks on my father — not even their own parents, but my father, who none of them knew — were considered venting, rather than attacks. I was stunned that implications that listmembers right in front of them could not be autistic and also nice, were considered venting, rather than insults. It seemed that the list had an unofficial but listowner-enforced policy of allowing hatred to be spewed at totally random autistic people, and insisting that if we did anything other than sit there and take it, we were not being supportive.

I was told when I left the list that perhaps later on, more people who had positive experiences would join, but that support groups attract people with negative experiences. I hoped that this would be the case, because I know, out in the world that is unfiltered by the misery-attracting nature of many support groups, at least as many people who have a good relationship with their autistic parents as people who have a bad one. By the way, it’s far more than five and not always any of the other things Singer characterizes us as either.

For the record, I have no problem with the idea that being autistic, and being autistic in the current world, can mean certain things about parenting style, even bad ones at times, depending on the person. I have no problem with the idea that there is a bad side to being autistic. The characterization of all who disagree with the direction and aims of Judy Singer’s “support group” (which is now much more than a support group, it aims to affect child custody research) as “unwilling to see the bad side of autism” is totally false.

The idea that because we are autistic (or “strongly identified as” autistic, rather than… what? “weakly identified”?), our opinions on having autistic parents is somehow of less value, is just as problematic as the idea that autistic parenting styles are automatically suspect because the parent is autistic.

Anyway, after I left, and after I was assured that maybe things would change, I stayed away for awhile. Then I checked back at the site for some reason. The site had taken on a much more negative, destructive tone than it originally had. There were now statements saying that people who were “strongly identified” as autistic (as opposed to people who just thought they might have some autistic traits), and people who had trouble reading social situations, were no longer welcome, and that the place was basically closed to all but people who had negative experiences and/or were willing to put up with highly negative characterizations. Characterizations that, from my experiences on the list, extended to all autistic people, not just the parents of the people on the list. So the list pretty much excludes anyone who can’t stand continual autie-bashing.

So the claim that it merely attracts people with a negative focus is no longer true. It now repels people with a positive focus as well as the vast majority of autistic people. It no longer just repels us inside the list, it now repels us outside the list, before we can even join.

Another change had taken place on the website, at that time.

The website had not only shifted to a much more negative portrayal, but was now taking an activist leaning in terms of getting involved in child custody law.

So not only had they decided to weed out nearly anyone remotely positive about autism, but they had now decided to try to affect the legal status and custody rights of autistic people. This is why support groups and politics should not be mixed. “Respecting people’s feelings” in the context of a closed support group, especially one as biased as this one, should not be the basis of attempts to shift policy change. Not when so many of us with different views are being repelled, and then mischaracterized as well.

I come from an extended family with both autistic and non-autistic members. I have been abused by autistic and non-autistic members of my family, and treated well by autistic and non-autistic members of my family. Anyone who thinks that I think all autistic family members are great or all non-autistic family members are awful isn’t paying attention. But neither is the reverse true.

I do believe that the idea of just acting like “a disability affects a family and we need to measure all the negative ways in which this happens and keep an extra close eye on parents with this label” is a very individual-model, medical-model, discriminatory way of looking at disability in general. I know of many good parents who have had their children taken away, or been threatened with it, because they were judged based on a disability label alone. Not to mention forced sterilizations and forced abortions that have happened for some disabled parents.

I’ve thought about having a child, or adopting a child. One thing that has stopped me is the potential that the kind of autistic-hating that takes place on that site (it’s not just about venting and sharing feelings, it’s about influencing policy with the results of those feelings, and not necessarily examining the feelings) could mean that I would have to fight for my right to keep a child from the moment the child was conceived. I have already encountered the prejudice of doctors who ignore my real concerns about parenting in favor of their stereotypes of what someone like me can and cannot do. Imagine that prejudice amplified by the idea that I am going to be selfish, egocentric, unwilling to get to know my child in a reciprocal manner, etc, as presented by ASpar.

Or for that matter, imagine my own family being ripped apart by these sentiments, either in my generation or earlier generations with autistic members. My family which, while having problems, does not have problems just because some of its members are autistic, but because people are people and people have problems with each other sometimes.

When there are questions about parenting, parents should be looked at as individuals, not diagnoses. There are plenty of selfish, nasty parents out there with no label at all and plenty of caring, devoted disabled parents, plenty of parents who don’t understand their children or who do understand their children (and this can be related to autism but it can actually go both ways, not just one way), and everything in between and the opposite as well. I simply haven’t seen the bias towards horrible negative experiences with disabled parents, or autistic parents, (or any other particular kind of parent) because I tend to avoid support groups and other places where misery congregates, so I get to see a wider range of people.

If this had stayed as just a support group, where people could do their misery-loves-company thing off in a corner somewhere, I probably would have forgotten all about it. But with the group claiming to want to influence policy and research, something needs to be said other than “Of course these people are right, and of course the people opposing them just don’t want to see autism’s bad side (and insert any other dismissive or negative characterization here that will allow our opinions to be conveniently dropped).”

And, on a related note, Venting or Hate Speech?

There’s a group of people out there, fairly amorphous to me because I do not keep track easily of who is who (so I hope I don’t get asked who it is), who seem to believe something like this: “If we are nice to autistic people, and we make appropriate ritualized gestures of ‘respect’ towards autistic people, and we get along socially with autistic people, and we meet them halfway, then it does not matter what we do to our children in the name of helping them, because our children are all individuals, and we are meeting these autistic adults halfway by deigning to at least talk to them.”

Some autistic people have been okay with this, encouraged by it. I have been mostly mystified by it.

Despite accusations of idealism from time to time, I tend to be a very practical person.

To my very practical mind, the above sentiments look exactly like “Parents have a right to do whatever they want with their child, all ‘treatments’ are entirely individually-based, etc.” only with lots of ritualistic social posturing all around it to soften the edges.

It’s still a very medical view of autistic people.

It’s still a point of view in which autistic people have very little power.

It’s still a very “intervention” based approach. (I loathe that word.)

It’s still a point of view that gives all the power to people who can decide to do very dangerous things to us whenever they feel like it, if they personally feel that the dangers are worth what they personally believe the benefits are.

There’s just… all the social posturing on top to make it look pretty, and to make those of us who are unwilling or unable to follow or engage in such posturing, look ugly.

I want to be clear on something, in that regard.

When I wrote Neurodiversity is not the opposite of biomed… it was not social posturing of that kind. It was not meant to legitimize biomed in any way. It was simply meant to point out that the concepts that are currently being called neurodiversity have been around longer than biomed, will probably outlast it, and are not concerned particularly with biomed. It was meant to address the self-centered nature of the viewpoint that whenever something autism-positive popped up, it was an attack on biomed, even if biomed wasn’t mentioned.

I did not write that to close some kind of gap, because all the social posturing in the world won’t bridge certain gaps.

People are dying and being damaged because of “biomed”, because of restraints, because of neuroleptic drugs, because of quacks who treat things that aren’t there while ignoring what is there, because of the long-term emotional effects of a lifetime of people trying to “fix” who we are, because of the lack of future planning entailed in a childhood spent with parents sure we would be cured by adulthood, and much more.

I don’t understand why putting a pretty face on the “everything is an individual choice” thing makes it any prettier when I look at the paragraph above. I don’t understand where the meeting halfway is happening. If simply talking to autistic people without overtly doing socially mean things to us is “meeting us halfway,” then I really don’t think that’s good enough. That’s something we should be able to expect, it’s not something we should have to feel grateful for or like people are really stretching to do it.

It seems that some people just want to get along socially because it feels nicer, less unpredictable and unpleasant, etc.

It’s not pleasant for me.

It’s not pleasant for me because I don’t have the kind of mind that can shut out what I see in front of me in favor of beautiful abstract weavings. Not for very long. I’m not even capable of hiding things from myself for very long, not to the extent most people are. And whether the abstract weavings take on the form of the sort of cognitive processes that suppress perception, or the sort of social niceties that obscure reality, they will fall at some point. Whether I want them to or not. It’s not voluntary. Illusions fall apart and I’m left with whatever’s in front of me.

I also lack the privilege necessary to maintain that level of pretence. If I pretended all that mattered, in the same way that many pretend it does, then I would be dead by now.

Neurology and circumstance have conspired to make me pretty unfazed by beautiful complex illusions over the long run. Not that they can’t entangle me briefly, but they fall apart rapidly. “Over the long run” I mean that sooner or later, they go away. Always.

Fortunately, there is plenty of beauty in reality, more beauty than an illusion could even vaguely replicate. But often the illusions cover up the ugly, unwanted, or inconvenient parts of reality. (And when I point out that this is happening, I am often regarded as not appreciating beauty, because I have little tolerance for pseudo-beautiful illusions.)

One often-unwanted part of reality is that no matter how you dress it up, the “Parents have an absolute right to decide what’s best for their child” viewpoint still creates enormous problems for the child. The “Every child is an individual therefore we can do any treatment we seem to think works” viewpoint still allows for many dangerous treatments for non-existent conditions, or dangerous and unreal treatments for existing conditions. All of these viewpoints tend to take a fairly individual or medical approach to autism, which in turn creates its own set of problems.

I see people doing the things that they’ve always been doing, but adding a few words here and there and claiming that now it’s okay because they’ve added these words, see, these words of respect, or something. The pretty social illusions, the shows of “respect”, the attempts to avoid open conflict while still doing the same old things… they do not change the fundamentals.