(Warning: Facetiousness ahead.)

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

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

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

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

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

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

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

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

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

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

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

There are 125 books by 70 authors.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• Jen Birch
• Joffrey Bouissac
• Axel Brauns
• Sofie Koborg Brøsen
• Eric Y. Chen
• Martha Kate Downey (non-autistic co-author to Kate Noelle Downey)
• Will Hadcroft
• Roger Meyer
• Patricia Clark
• Kalen
• Daina Krumins
• Sola Shelly
• Kimberly Tucker

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

In going through the numerous and interesting entries for Blogging Against Disablism Day, I’ve read a lot of posts that say, “We need people to see past the disability.” People name different things that need to be “seen past”: Wheelchairs, white canes, flapping hands, body or facial shape, etc. Apparently, what is “beyond” these things is the real person.

I’ll start by saying, I know what it is they mean by this, and I don’t need it explained to me. They mean that some people focus in on some attribute, and then sort of cover over the rest of you with the things they think that attribute means, rather than seeing you as a person.

It’s not as if I don’t encounter this on a regular basis. I use a wheelchair. I can’t use speech to communicate, which becomes obvious if you either know the significance of my communication boards or try to talk to me. I move and react to my surroundings in a way that’s distinctly atypical, in fact so atypical that many people seem to think I am not reacting to or understanding my surroundings at all. (That includes hand-flapping and other things like that.) I have a facial and body shape that, combined with these other things, subtly (sometimes not-so-subtly, as in I get remarks, but often I’m not even sure people realize they’re taking it into account) influences people’s perception of me. So I know very well what it’s like for people to not treat me like a person, on the basis of these things. And it’s definitely rare that people see me for who, and what, I am.

However, my wish is not for people to look past those attributes of me. Because it is not really those attributes of me that cause them to form all their stereotyped and mistaken opinions of me. And because, the term “looking past them,” even as a shorthand, turns these things into something undesirable, something not to be looked at.

I want people to be able to look at me, and see a person, and see all those other attributes and not have to look “past” them or minimize them in order to see me as a person. I want people to be able to see beauty in flapping hands. Not otherworldly, ethereal beauty attributed by someone going the other direction and putting us on a pedestal, just everyday ordinary beauty.

I don’t want people to have to look past anything. I mean, how insulted would most women be by “I look past the fact that you’re female and see that you’re a person”?

I want people to look straight at what they’re looking at, including all the things they supposedly have to look past, and like what they see instead of constructing all sorts of bizarre theories in their head about it, instead of being repulsed or frightened by it, and instead of concentrating on “looking past” certain aspects. If they have to look past those attributes in order to see us, they aren’t ever going to see us for who we are. They’re just going to see another substitute for who we are, little better than the first.

As long as people still have to “look past” things to see us, they’re never really going to see us. It’s the stereotypes they need to ditch, not the aspects of our appearance that they attach to those stereotypes. It may sound like only a semantic difference, but it’s more than that.

It’s Blogging Against Disablism Day. This is my entry. There may be more, but this is my first.

I once attended a segregated gifted program (yes, I’ve attended both gifted and special ed programs, and been considered both gifted and a writeoff at different times, get used to it, both are to me illusions). The kids in the program had often not been accepted at their own schools, and the program was a chance for them to be popular for the first time in their lives.

Because they had never been popular before, many thought they were morally superior to the popular kids at their own schools. They thought since they had been bullied, that they could not bully. Even as they bullied those of us who were “different” in other ways, such as, for instance, autistic people or people with speech impediments. Even I, who was very conspicuously different, wasn’t always the designated “omega”, although I was always close.

Even years after the program ended, many of the same people insisted that they never saw a single person being excluded, shunned, or bullied at the program. I remembered many specific people this had happened to, and described the incidents. “I never saw anything like that there,” was the reply I heard most often, even from people who had engaged in it. They painted the experience as a utopian “coming home” experience, devoid of all the discrimination that the rest of the world had (while meanwhile most students selected for the program were well-off and white… uh… yeah).

From this background, I had been aware, before really encountering the disability community, that people who have been the objects of discrimination or oppression, often view themselves as categorically different from those on the other side of it, and believe themselves to be incapable of doing the same things. While at the same time, doing all the same things, when given half the chance to be powerful and popular. I had also been aware that in order to defend a “coming home” experience, a lot, even physical violence, could be swept under the carpet to preserve a utopian image.

Of the disability community, Cal Montgomery writes:

Even within the disability community, even within the communities that work on disability rights, various subgroups adopt a strategy of tinkering with meritocracy so that the “right” abilities are rewarded and others treated as irrelevant.

A wheelchair user tells me that public transit does not need to be accessible to autistic people. She says that people should not be denied opportunity on the basis of physical ability, but that those with cognitive impairments should be under 24-hour-a-day supervision and control in special institutions built for us. An autistic tells me that public buildings do not need to be accessible to wheelchair users. She says that people should not be denied opportunity on the basis of cognitive ability, but that those with physical impairments should be under 24-hour-a-day medical care in special institutions built for us. And while we’re fighting this one out in the disability communities and in the larger society, known barriers remain in place, barrier removal is treated as a handout and an unfair advantage rather than a just response to entrenched disadvantage, and I indulge in the guilty pleasure of imagining finding a group of like-minded, like-bodied people and seceding from disability rights. Wouldn’t be too many of us: we’d be leaving a whole lot of people out. But we’d be the insiders for once, not the outsiders; and wouldn’t it be great?

That is from Harry Potter and the Allure of Separatism. It’s also one of the most concise descriptions I have heard of the rampant ableism in the disability community.

Within the online autistic community alone, there is a lot of acceptance of standard-issue barriers, and standard-issue prejudice, against physically disabled people as well as people labeled mentally ill or mentally retarded. Many people want only to win acceptance for autistic people, and only some autistic people at that. As such, things like mental institutions, developmental institutions, nursing homes, IQ testing, group homes, standard psychiatric practice, forced segregation in education, beliefs about “quality of life”, and other things of that nature are pretty much unquestioned except when they might have impacted the autistics who regard themselves as “high functioning”. There are, of course, many exceptions, but that does seem to be the overall view of the overall community: “Change as little as possible, just enough to make ourselves fit, and then stop there.”

Meanwhile, because autistics have been excluded and oppressed and discriminated against, there is a lot of resistance to the belief that we, too, are capable of that. All the traits involved in that kind of thing become neurological traits of non-autistic people only. We’re supposedly constitutionally incapable of the kind of ableism and exclusion we ourselves have faced. And yet it happens so often in the autistic community that it should be obvious by now that we are not, that we are no different than those “gifted” kids who were insisting they never did these things.

What does it feel like to be prejudiced, oppressive, and unfair? It feels totally normal. It feels like nothing other than everyday life. It does not feel like going around feeling a certain way all the time. It feels like anything else feels.

A black woman activist, her name lost to history, writing in the United States over a century ago said, “All power seems natural to those who hold it.” This is an astounding observation. This means that once you have power in your grasp it seems so natural, so normal, so “the way it should be” that you don’t even realize it’s there.

— Dave Hingsburger, Power Tools

I have never experienced the massive “coming home” experience that many people report in many settings. I’ve never experienced it in the disability community, the gay community, the autistic community, the mad pride movement, or anything like that. I have never had the sense, even when respected by a group of people, that I really quite belong there, in the social sense of belonging.

But I’ve experienced similar things with individual people. And I can imagine what it must be like to go from being treated like crap, to experiencing this sense of “People like me, people care about me, these people make sense to me, I may even be popular around here, and respected, and wow this has never happened to me before,” and so forth.

I can also imagine what it must feel like to have that threatened. Even if it’s not really threatened, exactly, but just seems like it’s threatened. “Things could go back to how they were. I wouldn’t be able to stand that. I like how things are now.”

And I sometimes think the hostility to self-examination in these communities comes from that. The notion, that thinking this community, whichever community, is less than perfect, might bring everything important in our lives crashing down around us. It might destroy this community, and then where would we be?

This is not to say that all criticism, or all accusations of ableism, are accurate. They’re not necessarily. But nor is all criticism, or all accusations of ableism, mere “negativity” that spoils this (whichever) amazing and wonderful community.

The reinforcement of ableism, prejudice, oppression… can take the form of “Things are fine the way they are. Your complaining spoils the atmosphere, and must be mean-spirited in nature, because I am happy here, and the problems only start when you start complaining. You’re just too bitter to see how wonderful things are.”

What this doesn’t take into account, is the possible experience of the person doing the complaining.

So a thought-experiment: Imagine that you are some kind of person normally called a Barnard.

Now imagine that you go into a community of people, of whom Barnards are supposed to be one subset.

And from the moment you arrive, there’s people talking all about Barnards. All the time. And you hear things like this, in conversations, online and offline, constantly, daily, in whatever community you’re in:

“We’re real people. We’re not like Barnards.”

“You know… I really feel sorry for Barnards. They have to live their whole lives in institutions. I mean, we don’t need institutions, but Barnards do.”

“She was being so Barnard about the whole thing, you know.”

“I used to teach a class full of Barnards once. I know all about Barnards.”

“Barnards are pure and incredibly spiritually sensitive. They’re not like us ordinary mortals.”

“You know… us, we can think, but with Barnards… there’s not really a lot there. Those Barnards, I wouldn’t want to be like that. At all. Scares me to death.”

“Look, I saw a picture of him. He’s a Barnard. There’s no mistaking he’s a Barnard. Just look at his face. My dad worked in institutions with people who looked just like him. He couldn’t possibly have written that. Barnards can’t write. I know this. I’ve worked with Barnards too when I went to work with my dad.”

“Calling the problems Barnards have participating in our events an accessibility issue is going too far. We may have accessibility issues, but Barnards have more serious problems, and we can’t do anything about that. There’s no possible way to remove the barriers they’re facing, in fact the problem isn’t barriers, it’s the fact that they’re Barnards.”

“You know, I can understand why she killed her son. I mean, I wouldn’t understand it if her son was like us. But he wasn’t. He was a Barnard. Do you have any idea that amount of stress having a Barnard in the family causes? Have you ever taken care of a Barnard?”

“We call ourselves the Everything-But-Barnard Community. I mean, we don’t phrase it that way, we call it the Barnes/Barton Community, so that’s not exclusionary. I mean, Barnards couldn’t even participate, so we’re just trying to be fair in not naming them.”

“We [inclusive of you, a Barnard] are Barnes/Bartons, not Barnards.”

“I think it’s really important that we prove that we’re not Barnards.”

And, you’re bombarded with this. Absolutely bombarded. And you’re a Barnard. So you’re not very comfortable. And it’s not random emotional discomfort, it’s more the little acts of degradation that Cal Montgomery enumerates in Project Cleigh. But somehow this one is supposed to be your community, and you’re experiencing them within “your” community.

And, you like what you seem to see in “your” community. You see people who share a lot of your basic values. You see people experiencing togetherness and community that they had never experienced before. And, you want to take the same things and go farther with them. Open up doors for more people. People like you, but also other people. You start seeing what it means for people to be excluded on the basis of, maybe not being Barnards, but being Collinses or Smiths. And you start to think, “Wow, I agree with the ideas, but I don’t fit here, how can I fit, how can others fit?”

And you start seeing what the consequences are, of all the words that people are saying. It’s not just that your feelings are hurt. It’s that you are being bombarded with reminders of the fact that people like you, and other people, are not wanted, are not desirable, are not real people. And these have consequences, these are the ideas that lock people in institutions, these are ideas that prevent people from having this sense of community, these are even ideas that kill people, and justify people’s deaths.

So, you say something. You think that, since these people have faced exclusion themselves, they’ll see what you mean.

And, you get things like:

“I don’t hate Barnards. You’re not a Barnard anyway. I’m not prejudiced. I’m really insulted that you think I’m prejudiced.”

“Well, Barnards never show up. You’re the first one. And… you’re different, than, you know, some Barnards.”

“I would have never known you were a Barnard.”

“Your negativity could destroy the community. Do you want that??? Do you realize what’s at stake???”

“Your issues are not accessibility issues. They’re Barnard issues. Deal with it.”

“You’re doing a lot of damage with your accusations. Stop.”

“We don’t really have the ability to accommodate everyone. We’ll win rights and justice for ourselves, first. You have to realize, a lot of us don’t really want to be associated with Barnards, and that is our right. Later on, though, you guys might be able to fight for your rights, but right now, let the rest of us handle things. Including people like you would just slow us down.”

“You’re attacking us! How DARE you after all we’ve done for you Barnards?”

“You’re being divisive.”

“We’ve had Barnards here before, and none of them complained. I don’t believe you when you say they did complain — to you. There have always been a couple Barnards and there has never been a problem until you.”

“Can’t you see that all you do is cause a lot of destructive bickering and negative energy?”

“I see that you’re a Barnard. You know, your deficits as a Barnard would make it impossible for you to see the real situation here. In fact, I don’t really believe that you’re the person bringing up these objections, I think you’re being exploited.”

“Thank you so much for sharing such important feelings with us. But in the future, can you please use I-statements? The formula for I-statements is ‘When you [x], I feel [y].’ That’s the only respectful way to talk to us, and we’re not going to listen until you can talk that way. Uh… what do you mean it’s not about feelings?”

“Multiple peer-reviewed studies have shown that all communication supposedly coming from Barnards is not real communication, so she [speaking of you in the third person] isn’t really saying this, it just looks like she is.”

“A real Barnard would be spiritual and pure and loving. You’re too angry to be a Barnard. You’re a liar.”

“I’m sorry you feel that way.”

“You must just have a chip on your shoulder.”

“I… have really strong feelings… and… they’re hurt… by conflict… and you’re creating conflict… and I can’t deal with conflict… and so… stop the conflict… stop complaining… stop whining… stop bickering. I’m very sensitive to emotions… very empathic… so I know you’re not for real.”

You know, they told me, I don’t look — Nobody would have to . . . I could be just another crip.

And as if I were just another crip, they started with the jokes and comebacks.

“She asked me whether my toenails still grow; I asked her whether her hair still grows.”

“They want cognitive disability representation? Why don’t they just ask ‘SuperChris’: he’s cognitively disabled.”

“They may be able-bodied, but we’re able-minded.”

They didn’t mean me, of course. I wasn’t like that, wasn’t like them. They meant no offense.

Perhaps it is enough to say that my vision of “the disability community” and theirs does not coincide.

— Cal Montgomery, Critic of the Dawn

And, of course…

“I don’t understand. Things were just fine until you came along, and now I’m upset, and… stop it.”

Never mind that, things have not been just fine, for Barnards, all along. And never mind that there’s been constant and unrelenting and real negativity all along, just pointed at Barnards, and that pointing this out is not what makes it negative. It’s just that, if it’s pointed out how not-fine things are for Barnards, that might spoil the illusion that things are just fine. But from the perspective of non-Barnards, things really are just fine, and since they don’t feel like they’re excluding Barnards, they must not be.

Of course, it’s perfectly possible for someone to pull the example of Barnards out, to promote horrible things. I know a woman who always yells, “But what about the Barnards?!?!?” whenever people talk about torture at the Judge Rotenberg Center. Somehow, “Torture is good for Barnards” has never struck me as particularly humanitarian, but there are people who tell me on a regular basis that I’m inhumane for wanting torture to stop. Apparently, opposing torture is discrimination against Barnards. I’m not buying it.

At the same time, it’s very easy for people to say “I’m not buying it” when there really is discrimination against Barnards. When a physical-disabity-centric event isn’t cognitively accessible to most Barnards attending, it’s easy for them to say “It’s not discrimination, it’s just the way it is.” And they’re wrong.

So, I guess the point of all this is, there are many forms of ableism that go overlooked within communities, precisely because of what the communities mean to many of the people in them. Many people believe “I have been harmed, therefore I cannot do harm,” and do harm. Many people believe “If I examine ableism in this community, it might rip the community apart, it might no longer be there for me,” and don’t examine it.

So, when a Barnard says, “Hey, wait a minute,” don’t assume that things were “just fine” until they spoke up. They might just want to be broadening your community, and your ideas, to include more people. And ableism isn’t always obvious, it doesn’t carry a neon sign in our thoughts and actions saying “We are being ableist,” but it is no less there.

…in response to the people who are so frequently “reminding” me of the presence of things like institutions, and of people designated as LFA…

“Yes. I totally agree with you. I have been institutionalized, and I have been regarded as LFA, and I regard this kind of autism as a total curse. Those aspies can say what they want, but they have never been through the kind of hell that we have. Autism of this kind is a real disability, not just a difference, and I totally believe in research into prevention and cure.”

I want to know how many of them would strive, as they do now, to pull me into some other category. How many of them would still continue to say, “But you are different. You’re not like the people I’m talking about. They cannot and will never communicate even the simplest concept.”

How many of them would say, “Your end of the spectrum has agendas, the other end has needs”?

How many of them would go over every detail they either find or imagine about me with a fine-toothed comb to differentiate me from the people they claim to be representing?

Very few.

Even when a 40-something woman who identifies as being “high functioning,” posed as a 25-year-old “low functioning” man, many did not question her. Even when they knew her secret. But they would have been all over her in an instant, and probably accusing the rest of us of faking as well, if she hadn’t portrayed autism as one of the worst fates on the planet.

Meanwhile, people have looked over the lives of the rest of us for every supposedly contradictory or slightly misstated detail, while the same people have ignored glaring instances of lying, exaggeration, contradiction, and just plain inaccuracy in autistic curebies.

So for any curebies who happen to be reading this, I want you to think really honestly about this. You don’t have to tell me what you think, just think about it. If I were to claim that I was low-functioning (a category I currently reject, but have been officially put into), had experienced institutions (something that is true), described these things (along with, of course, self-injury and other “horrors of autism”) in exquisite detail, and said that on the basis of these things, I wanted a cure, I wanted autism prevention, I thought being autistic was worse than death, and so forth… would you still be telling me “You have a system of communication, therefore you are totally different than the people I want to cure/prevent”? Or would you welcome my input uncritically? What if I put in several pieces of information you knew were false, such as “I’ve never spoken in my entire life” or “I was institutionalized for ten years”? Even then, would you let it slide for the sake of my getting your message out there from an “authentic” source?

Think about those things, and think about them seriously, before you start nitpicking for details to set us apart from the people you claim to advocate for.

This is an unfortunate addition to my previous post, Temple Grandin, displaying near-textbook “HFA/AS elitism”. Because I have obtained Temple Grandin’s expanded tenth-anniversary edition of Thinking in Pictures. Here are some quotes.

Page 56:

There is concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, non-verbal individual. The development of genetic tests for autism will be extremely controversial.

Page 122:

Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.

I don’t quite know where to begin with this. It’s not just autistic people who can be good inventors, and I’ll leave that part at that.

The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-“LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.

She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.

Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz, or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.

(For anyone who has mischaracterized me as “angry” in the past, I really am angry while writing this post. But I tend to think that being told that you have no value in the world, especially by people in power, is enough to piss anyone off. Being pissed off in situations where it’s natural to be pissed off, doesn’t mean I walk around pissed off all the time. And the fact that I’m mad right now, doesn’t mean I’m wrong.)

Anya Souza is one of my heroes. No, not because she’s “overcome disability” or any of that fake-heroic crap. It’s because of the more traditional definition of hero, a person who puts themselves out there to fight for what is right. The article I Am A Person, Not a Disease describes her fight to stop the prenatal eugenocide of people with Down’s syndrome, which she herself has. I’m not sure Temple Grandin would come up with a lot of “uses” for Down’s syndrome, but Anya Souza seems clear that it’s a part of natural human variation.

Before anyone tells me that Anya Souza is high-functioning for someone with Down’s syndrome, let me tell you about David. I was locked up with David. He had Down’s syndrome and, like a disproportionate number of people with Down’s syndrome, he was also autistic. He made one sound over and over again, and was regarded as “not being in there”. But everyone but some of the staff valued him for who he was. To us, he was another person, a real person, not a mistake or a defect. To some of us, he was a friend. The problem was not that he was autistic, not that he had Down’s syndrome, and not that he was classified as low-functioning, but that he was born into a world where these things are not considered compatible with full personhood.

Let me be clear: When I talk about neurodiversity, I mean all neurodiversity. Not just the people that Temple Grandin happens to find worth in. I am fighting for a world in which there is a place for every single one of us and our value is not even questioned. I know it’s a long way off, but it’s way better than fighting for a world from the standpoint of, as Cal Montgomery puts it, “a legacy…of exclusion rather than inclusion, hierarchy rather than egalitarianism, and an imagination that was meant to open the world to certain kinds of people and then slam shut forever.”

I honestly think Temple Grandin owes an apology to the many, many autistics she has used her position as the most famous autistic person on the planet to devalue. But more than an apology, she owes us a serious attitude change. Not, mind you, just because of our “feelings”: It’s our very existence she could help eliminate in the future.

Azusa of Amorpha writes, in Don’t Take Advantage of Our Good Will:

If you want to get to know us just for the sake of getting to know a plural, any plural, we’re not interested (especially if you want to try to exploit us– been there done that). If you want to get to know us as individual persons, then we’ll talk.

If you replace ‘plural’ with ‘autistic’, you have my current view on things.

I have just read, listened to, and watched (yep, all three) some stuff by Dave Hingsburger around the topic of people whose only ‘friends’ are staff, and whose staff don’t bother to think about how isolated people really are whose only ‘friends’ would never be their ‘friends’ if they weren’t paid to be with them. He describes how this is not real friendship, and how staff’s refusal to acknowledge it impedes the development of real friendship.

He talks, in particular, about how horrible it is for the disabled person to suddenly realize that none of their friends are really friends, but only people paid to pretend to be their friends.

The story of a person’s life is supposed to be personal. If that person chooses to reveal it to a lot of people, that happens, but most often a person will choose to reveal it only to a few friends. Real friends, not fake friends.

Many people believe, however, that the story of my life should be public property. The boldest will tell me outright that it is my obligation to provide them as much detail as possible about my life, that anything else is pure selfishness and avoidance of responsibility. Some of the slightly tamer sorts will simply say, “Tell me your story.” Others are more slippery, and will try to ask in roundabout ways that amount to the same thing but are harder to detect, or will badger incessantly but subtly with little hints about what’s wrong with not complying with their wishes. Some will pull the good-autie/bad-autie split, where good auties tell their stories and bad auties are just weird angry twisted bitter creatures who should tell their stories but refuse to. All show a lack of respect for me as a person, even more so than someone demanding to look at my naked body.

I met a woman once who kept insisting that I “tell my story”. I kept explaining to her that I found her insistence exploitative and demeaning. She kept ‘explaining’ to me that “telling my story” was the most powerful thing I could do. All the other things I was doing, stating my opinion, telling only the pieces of my story that I see fit, are somehow not powerful enough, in her eyes. And she had no clue how disempowering it is to have someone insist they know exactly how to ’empower’ you and you damn well better do what they tell you. (Er…)

If I had a nickel for every person who asked, told, or demanded me to write my autobiography, I would have more money than the royalties from the book itself.

This is invasive. This is demeaning. This is exploitative. Not just when it is done to me, but when this insistence is foisted on autistic people in general. I have been treated like my body belongs to other people, and that they could do anything they wanted with any part of it. This “story” thing is worse. It’s saying that our lives belong to other people, and should be taken by coercion, trickery, or force if we’re not willing to give them out freely. If that sounds uglier than you’d imagined, it’s because it is.

However, this ugly thing is often carried out, like many ugly things, in an innocent disguise. People’s belief that our stories belong to them may not be a conscious one, but it’s implicit in asking autistic people routinely for our stories when the same people would rarely ask a non-disabled complete stranger for the same thing. People’s belief that our stories can and should be taken by force might not be a conscious one, but it’s implicit in the numerous ways they try to convince us to “tell our stories” after we’ve made it abundantly clear that we don’t want to.

I don’t know about other people, but my life story is a hell of a lot more private than my genitalia, and I don’t give out my genitalia to everyone willing either.

The people I’m the most worried about, though, aren’t me. They’re lonely autistic people who are new to the “autism community”. People who’ve never had a friend in their lives, or whose friends left a long time ago, who come onto the Internet, or parent support groups.

And what do they find?

They find people hanging on their every word. They are asked really basic, obvious questions about autism. Things any autistic person would know. And they answer correctly. And people go “Oh wow, what amazing wisdom and insight,” because they don’t realize that they’re doing the equivalent of asking “What emotion does smiling generally convey?”

Then people continue: “You should write your autobiography. You should tell your story.” And a whole litany of questions, often intensely personal ones, ensues, leaving autistic people even more confused about what we’re allowed to have privacy about and what we’re not.

These people are not friends. But a lonely autistic person may not realize that, any more than we always realize at first that paid friends will leave when they quit being paid.

So it’s lonely newbies that I worry about the most, in these areas.

Nonetheless, even not being a newbie, it still wears me down. I know many autistic adults who won’t go near groups dominated by parents, because of this kind of pressure. They have learned that if they want to be considered an individual and interesting person in their own right, they need to hang out with people who aren’t looking for an autiebiography on legs. The single most exhausting part about being around large numbers of un-autie-accustomed parents, for me, is the constant questions, the seemingly insatiable thirst for information pointed straight at me. It’s like walking into a mosquito convention, only instead of blood they’re trying to suck up information and advice. It ends up uncomfortable, itchy, and potentially dangerous.

“Auto-vivisection” is what one of my friends calls this procedure. Ripping yourself open and displaying your insides for everyone to see.

For all autistics, the insistence and encouragement that we tell our stories is a real and problematic issue. Some solve it by telling their stories. Some do so prematurely, and will regret it later, after the irreversible act of publication, after their opinions change, after they learn more about themselves, and so on.

So if the first thing out of your mouth, or fingers, when an autistic person tells you something that you happen to find interesting or insightful, is “Tell your story,” find some way to counteract this impulse before it makes it from your brain into words. Don’t try to soften it with “if it’s not too personal,” just don’t say it. The pressure on us in this department is already immense. Don’t contribute to the destruction of our privacy.

This post has been years in coming. And it might be duplicated in previous posts. I’m having some temporary trouble with memory at the moment.

What, exactly, is the deal with feelings?

Or rather, what, exactly, is the deal with feelings being elevated in importance to the exclusion of nearly anything else?

I keep picturing this scenario: I’m drowning — I’m not a good swimmer to begin with, so that’s possible. I’m close enough to shore that someone can throw me a life preserver easily. Someone is standing there, next to a life preserver. Instead of throwing me a life preserver, the person waxes poetic about his feelings. And my feelings. His feelings of terror and hopelessness. My feelings of terror. His empathy for my feelings of terror. A long, nuanced, beautiful description of the emotional impact of what is going on, at least from his perspective. And he doesn’t throw me the life preserver. He’s too busy dealing with feelings.

I don’t know that that exact scenario would play out. But I remember, along with Laura, begging, demanding, and whatever else we could do, the Housing Authority to clean up their construction practices. There was concrete dust that wasn’t being vented properly out of the building, and it was messing with the breathing of a lot of the people here, including us, who both had asthma. The situation was getting on the level of life and death.

And the response we so often got was someone trying to “validate” our “feelings” about the matter. As if feelings were the issue there. When you can’t breathe, it’s not your fear or anger that you want fixed, it’s your breathing.

In saying things like this, I often get put into assorted categories. “Thinking” rather than “feeling” personality-type. “Rigid Aspie” rather than “sensitive autie”. “Heartless bitch”. Etc.

None of those categories are true. What I am, is a person who is incredibly emotional, in fact. I’ve just learned through experience that there are more important things in life than emotions. I’ve learned that there’s a time and place for “expressing one’s feelings” and a time and place for not doing so. Stereotyping me into one of those “ingrained” personality or neurological patterns denies the reality of learning and choice.

I’ve noticed, though, that there’s a culture that has spread throughout most of, at least, America, if not other places. A therapy culture. One in which emotions are paramount. In which expression of emotions is always okay, and encouraged, provided it’s done in a “respectful” way. In which all problems are the result of someone’s emotions. In which “validating” people’s emotions is supposed to solve many serious problems. And in which there is no such thing as a bad emotion, or an emotion that needs changing. Emotions become sacred things that appear out of nowhere, are pure, and define everything.

Emotions do not usually (certain kinds of seizures, for instance, excepted) appear out of nowhere. They are tied to ideas, experiences, actions, prejudices, and patterns of thought. They are not pure. They are as tied to the world and to the rest of us as anything else.

Emotions are useful in many situations. They guide our responses. They assist us in various ways. But to trust to them, and their expression, without thinking of anything else, is irresponsible. There’s a time and a place.

Knowing these things does not make me an unemotional person. I am an incredibly emotional person. I can be paralyzed by fear, I have a nasty temper, I feel huge depths of joy and affection, and so forth. But I know that, for instance today, when my staff had to run off to adminster CPR to someone, it wasn’t exactly the time to describe in detail how scared I was.

But it seems like a frequent response, for someone who did do that, is to act extremely hurt, and say “I was just expressing my feelings.” As if the expression of feelings is always right, and never open to question, as to whether it was right to express them right then, in that way, or (gasp) even to have those particular feelings.

If a person feels revulsion every time they look at me, as some have made abundantly clear that they do, I think there’s something wrong with how they think about people like me. That carries over into feelings of revulsion. But the feelings of revulsion are not sacred, are not out of nowhere, and they’re not even really okay. They’re products of some combination of attitudes, prejudices, thoughts, misplaced “empathy”, and a whole slew of other things. Those feelings of revulsion can be changed, with changes to those attitudes, prejudices, thoughts, misplaced “empathy”, etc. But to say so is to do something else that’s apparently quite problematic — to “tell someone how to feel”.

And then there’s the neverending situations that I go into with an attitude of problem solving. And get one of two main responses. One is to “validate” my emotions without solving the problem. Another is to react to a real or imagined perception of my emotions, in a negative way, and fail to solve the problem as well, maybe even refusing to do so until I feel differently.

Neither of these approaches seems right to me. They focus on the emotions, or the perceived emotions, or the expression of emotions, rather than the problem. They’re “Sorry I won’t give you life-saving medical treatment until you quit yelling,” and “I’m sorry you feel angry, I hear what you’re saying, I really do, and I empathize. Oh, how I empathize. I wish you did not feel angry. Is there anything I can do to keep you from feeling so angry? What do you mean the problem isn’t anger?”

“Hurting people’s feelings” is also uniformly bad in some circles, even if their feelings are hurt for reasons that have nothing to do with your doing anything wrong. Saying that I oppose an autism cure, for instance, deeply hurts the feelings of a lot of parents and probably some autistic people. I’ve seen some people describe their feelings in detail, in response to the cure thing. (Curiously, it’s often self-pity that they describe. And no, I’m not immune to that, either, I just don’t think it’s the greatest or most truth-revealing emotion on the planet by a longshot.)

Do I want life without emotions? Definitely not. Am I unaffected by my own emotions or other people’s emotions? Definitely not. Am I aware that emotions are only one piece of things, that they are not trustworthy guides to reality, that it’s possible to do devastating damage in the name of “flowing with your emotions freely”, that the “therapy culture” is probably doing more harm than good, that there’s a time and a place? Definitely yes.

I’ve written before about there being different sorts of autistic people, and relating more to some sorts than others. I’ve never been able to articulate what it is that makes up the sort of people I am more likely to relate to, because it’s always been intuitive. But I think I’ve finally figured out some of the elements. So here are my rather self-centered “wow this person is a lot like me” sort of criteria:

Autistic or autistic-type stuff

• Exceptional spatial abilities. This does not necessarily mean exceptional visual abilities, although it can. I mean the ability to map space, no matter what senses are used to do it. I’ve met a blind man with a diagnosis of “severe mental retardation” who has better spatial abilities than I do, and mine are pretty good. I don’t think he was using vision to map things, but he was mapping them.
• A sense of all languages and all symbols as being foreign languages, and as continuing to be foreign languages no matter how superficially proficient we become at them. A sense, not philosophical but gut-level and often uncomfortable, that language and other symbol is a strained abstraction that we throw together over reality without ever touching it.
• Figuring out some major aspect of language-as-communication-non-autistic-style much later than normal (if ever), and therefore having understanding of something from before that.
• Perceiving what surrounds us in ways other than most people would. Not just “hypersensitivity” but a whole different understanding. For instance perceiving my wrist brace not as a “wrist brace” but as a potentially bitable pattern of a certain texture and color and so forth. (No, not because of “weak central coherence,” because of a very different perceptual organization.)
• Having different perception of this sort be common enough (not just fleeting) in our lives that we understand the world mainly through that kind of pattern, not through intellectualizing categories. (Not that we necessarily can’t intellectualize categories but this would be as much of a “second language” as language, and viewed as a clumsy backup if anything.)
• Approaching language from this same sense of pattern, rather than the usual approaches to language.
• Having deliberate movement distant and elusive. (Automatic, cued movements might not be.)
• Having many “typical skills” appear and vanish and appear and vanish, rather than staying put.
• Having many shifts in abilities, whether seemingly “progress” or “regression,” on a regular basis.
• Going from extremely athletic and agile to closer to immobility with age (er, much younger than most people do, that is).
• At least sometimes requiring assistance moving.
• Shutdowns regularly, not just sometimes.
• Ability to read and use the same sort of body language I can read.

Life experiences

• Institutionalization, in nearly any form.
• Having a wide variety of ways you’ve been viewed and categorized (from “no future” to “good future” etc).
• Having most of your most important abilities viewed as non-existent, worthless, or both.
• Having at least a little background of being valued on an equal level with non-disabled people, regardless of professional decree of “severity”.
• Having experiences with both integration and segregation.
• Coming from an extended neuro-atypical family.
• Noticing at some point that the world seems to have no place for you, reacting against that, and having that response medicalized.
• Having people constantly confused about what you can and can’t do and attributing all kinds of traits and motivations that aren’t there.
• Knowing one of the unspoken “institution languages”.

Personality traits

• Sense of justice.
• Lack of reflex-level trust of authority.
• Belief in love (not the romantic kind) as something other than an emotion or a fuzzy feel-good stereotype
• Not exactly a personality trait, but mystics in the old-fashioned, non-fluffy, not-synonymous-with-“psychic”/”occult” sense of the word (quite often not the people you’d suspect, and not going to be parading themselves around as special). For lack of a better term.
• Either reserved or “autistic” about display of most emotions, but not unemotional. Just not throwing emotions in your face and demanding a response.
• Optimistic pragmatists. :-) (Meaning people who are very practical but don’t use being “very practical” as an excuse to never change anything or to assume that the status quo is all there’ll ever be.)
• People who will treat political problems as political rather than emotional, more likely to view political change as a solution rather than the “therapy culture”
• Understanding and happiness with the fact of being autistic, at the same time as not necessarily being the stereotypical “HFA/AS” type.
• Enjoying spending time with people without necessarily talking.
• Not trusting that something exists just because psychiatry or some other such profession says it does.

Note that this list isn’t exhaustive. It’s not meant to be diagnostic of anything. It’s not meant to say this is the best way to be autistic, or the only way to be autistic, or the differentiation between autism and Asperger’s and HFA and LFA and all that crap. Not all of it even has a thing to do with autism. These are just the things I end up identifying with in other autistic people.

It’s also important to note that some of the things I’ve listed in ways that sound like deficiencies, I’ve only listed that way because I don’t know the words for how to say what I really mean. “Lack” of certain kinds of thinking means a whole kind of patterns and perception and so forth that most people seem unable to use. I don’t know how to describe that. “Lack” of certain kinds of movement… likewise, only I have fewer words. Many things that involve “not learning” one kind of thing, are that way because there’s something else going on, “underneath”, that I can’t describe.

This isn’t even “the only people I want to be around”; I’ve had good friends who can’t navigate the world without language or conceive of anything outside of it. It’s just “who I identify with the fastest, who I often communicate with the easiest, etc”. I’m sure other people have totally different, but overlapping in some areas, lists. Also, not everyone I identify with this way is formally recognized as autistic. Many have other labels, or none at all, but there are commonalities.