Monthly Archives: April 2006

Lessons on Inclusion from a Segregated School, Version 2 (from memory, not an exact reproduction of the first one)

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I keep hearing that some disabled people are just too hard to include in regular society. That we have behavior that can’t be tolerated, that nobody will ever put up with the way we look, that there’s nothing we could possibly do, and a lot of other things like that. And I think back to one of the segregated schools I attended.

This one, unlike the others, was not on the grounds of an institution, although it might as well have been. The school did run several group homes, and many students lived in the group homes and were driven to school from there. Many of the other students were on strict behavior programs at home, went to school, and only left the house for segregated day programs. As far as I can tell, the main difference between the life lived by most students there, and an institution, was the distances involved between one part of the institution and another, which were traveled by car instead of on foot. We were still separated from the rest of society the vast majority of the time.

The people at this school were everyone the district didn’t want in its regular schools, as far as I could tell, although there weren’t a lot of purely physically disabled kids there. I don’t know where they all went, since most of them weren’t at regular schools either, but I suspect it had something to do with their insistence on not being lumped in with the “retards”, that over time there was probably a new rule made or something that purely physically disabled (or passing as purely physically disabled) kids had their own schools so they wouldn’t have to be in with the rest of us.

The rest of us included people who as far as I can tell, were everyone else the school system didn’t want in their mainstream classrooms. There were kids there from the psych system. There were kids who were extreme bullies, and who probably bullied normal kids, since bullying disabled kids rarely gets you recognized as doing anything wrong enough to be sent to school with them. There were kids who often got in trouble with the law. There were kids who sexually assaulted other kids. There were kids who were autistic. There were kids who were diagnosed with mental retardation. There were a couple kids with cerebral palsy, and diagnoses of other things too, since without those other diagnoses they’d probably have gone to some school for physically disabled kids. There were kids with dyslexia and other learning disabilities. There was one kid with narcolepsy. There were kids with Tourette’s or OCD.

It was basically anyone who wasn’t wanted anywhere else. And this school — which was a horrible school, by the way, with almost no good points to it and a lot of illegal things going on, lest I later paint what sounds like a good picture of it — supposedly specialized in the really difficult cases.

I notice something peculiar about this: We were supposedly too difficult for mainstream kids to put up with, but we were somehow not supposed to be too difficult to put up with each other. This is one of the strangest things about segregation to me. Somehow mainstream kids don’t have to put up with us, but we, who supposedly have less people skills, are supposed to figure out how to put up with each other.

The thing is, we did. We had no real choice. We did not always come up with particularly constructive ways to put up with each other, but we did have to come up with ways, nonetheless, because there was no escaping. And I don’t think that non-disabled kids always put up with each other in constructive ways, either, but they do put up with each other. This is not saying we all liked each other, or were all friends, because we weren’t. But we at least tolerated each other, which was more than mainstream kids were ever asked to do for us.

Anyone who thinks this was some kind of utopia for disabled kids, where differences don’t matter, wasn’t there. I was sexually assaulted several times by other students, and then blamed by the teachers for not picking up on the cues that it was about to happen. One time the teachers even found it hilarious and wouldn’t stop laughing about it. Many of the kids teased the kids they called the “retards” or the “special kids”. And while there were a couple teachers who really tried to make a crappy environment work for us, many of the teachers were bigger bullies than all the kids put together, and came up with creative, and probably illegal, punishments for minor infractions. Low expectations were normal there.

But at the same time, something became very clear to me: Unless disabled kids, including kids labeled “socially disabled,” are much, much more innately capable of putting up with each other than non-disabled kids are, then non-disabled kids could have put up with every last one of us, too. If they’d had to. If they hadn’t been encouraged towards a sense of entitlement that they don’t deserve, an entitlement to a life and an education totally free of the ones they consider undesirable.

Because if we were so “distracting” to be in a classroom with, why would we, who were said to be so much more distractable than usual in the first place, have been put in classrooms with each other? If we were so socially incapable, then why would we be expected to do what the “socially skilled” normal kids could not, and find ways of dealing with each other’s presence?

This, of course, extends well beyond kids, and well beyond school (I view school as flawed anyway, for everyone, so I’m not saying much positive about any schools here, just to be clear).

When I got out, I was surprised to see people walking down the street who did not suddenly scream or tic or rock. I was out of place. Many times, other weird people, many of whom had been in the system, would walk up to me, recognizing the look I guess, and start talking, and I’d have a sense of normalcy for awhile. But a lot of the time it was culture shock. Groups of non-disabled teenagers frequently ran up to me and tried to “trick” the “retard”, which is apparently evidence of their very high degree of social skill, or something. I was relieved whenever I saw someone who, by their walk or way of reacting to things or actions, was clearly not a standard-issue person.

But most people either saw me as a walking target or a person to avoid or patronize. The walking target part wasn’t new, but people didn’t really get a chance to avoid each other for being in special ed. We’d have had to have avoided ourselves, for starters, and there was nowhere to go where you could avoid meeting other disabled people. Since the only non-disabled people there were teachers, and a lot of the teachers there weren’t very nice, you wouldn’t even necessarily want to be around solely non-disabled people. Patronizing there came mainly from teachers, not students, although some students of course picked up patronizing from the teachers.

But what I keep coming back to, was we were never allowed a sense of entitlement to not being around each other. That sense of entitlement allows some non-disabled people to view our presence in their world as an optional obstruction to the way things normally are, instead of a part of the way things normally are that they’d better get used to. We had to make concessions for each other all the time, we even had to make concessions to non-disabled people by attending these horrific schools, but non-disabled people were never forced to make any concessions for us, so they view that lack of concessions as something they’re entitled to.

So do some disabled people, I have noticed. Physically disabled people don’t seem to want us in their own segregated schools, and I’ve seen many speak with more horror at being “lumped in with the retarded kids” than at being forcibly segregated in the first place. And many disabled adults, of all kinds, only want some kinds of disabled people, if any, around them.

I’ve talked to autistic adults who manage in the non-autistic work world every day, most of whom were never forcibly segregated, who claim they couldn’t bear being around autistic people who make loud, involuntary noises so all such people just shouldn’t be allowed around them. Now I’ve got as much auditory sensitivity as anyone, but I’m also a loud, involuntary noise-maker at times. Moreover, I was in a school full of autistic people, some of whom had too many noise sensitivities to stand a standard-issue workplace, and somehow we all survived having people there (who were sometimes us, of course, since noise sensitivities and making loud noises are not mutually exclusive) who were out in the courtyard screaming every few minutes, or who squealed and ticced loudly. Not that this prevents me from trying to stop screaming, since I’m aware of noise sensitivities, but I’m under no illusion that people like me are welcome a lot of places until we do figure that one out, and we’re usually the first ones to get thrown out instead of anyone thinking that both sets of a people have a right to be in any particular place and there needs to be compromise.

Likewise, I’ve seen horrible fights break out between people who have particular receptive language problems and people who have particular expressive language problems, both expecting the other to totally capitulate to their needs or else. I kept thinking, this is like listening to a bunch of signing Deaf people take offense to the idea of using interpreters around blind people while blind people insisted on signing Deaf people speaking, while a bunch of deafblind people (like, in this analogy, me, since I don’t always write in ways people can understand and can’t always understand some people’s styles of writing) sat around wondering why people couldn’t just quit taking offense at everyone else’s areas of difficulty and start looking for solutions.

Meanwhile, people with assorted receptive language problems were telling people with assorted expressive language problems to “try harder.” People with assorted expressive language problems were becoming offended and insulted at even an honest description of what reading their writing was like for people who had serious trouble reading it, and insisting that other people must make the effort no matter the cost. People with receptive language problems were in turn becoming offended and insulted at equally honest descriptions of what trying to write in standard English was like for those who had trouble doing it, and insisting that other people must make the effort no matter the cost. The idea of interpreters was rejected by nearly everyone as simply impossible, mainly apparently so they could go back to fighting. I can imagine a lot of problems happening at my school, but not that one.

We didn’t have the option of running off in a huff to some other school. Pretty much, that was the last stop for people schools didn’t want. Any further from that and we’d be in the kind of institutions that have a school somewhere on the grounds, rather than the ‘distributed institution’ that most of us lived in (nominally ‘in the community’, but, only nominally). And the kids weren’t the ones who made those decisions, anyway. Therefore, we had to learn to at bare minimum put up with each other, one way or another. An attitude that I find way too lacking out here, because most people have the “out” of saying “No [insert kind of person here] allowed.”

It seems to me, sometimes, that there were things more “inclusive” about the segregated environments I was in, than the supposedly-integrated ones I encounter in the outside world. There’s this sense, out here, that non-disabled people, and maybe a few of the elite among disabled people, own the world and the rest of us are intruders in it, who must be on our best manners at all times to keep from getting tossed out. Meanwhile, non-disabled people can often get away with, well actually murder is one thing they do often get away with towards us, but even lesser things too like severe bullying… and somehow we’re still the invasive and intrusive ones, because it’s their world, not ours. (This is why I refuse to refer to integration as inclusion.)

So I’ll close with a quote from Chris deBurgh’s “The Getaway”:

Das ist auch unsere Welt
This is our world too
Oui c’est notre monde aussi

What if I were to say…

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…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.

Temple Grandin devalues us again, in print this time.

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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.

Exploiting our stories. Destroying our sense of privacy.

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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.

The “right” to freedom from disagreement.

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While I was approving comments today (and marking half the comments I got as spam, ugh) I came across a comment on one of my older entries, Suicide and Autism Severity. The commenter said that the person I was disagreeing with in that entry has done a lot for our community, and that the amount of people who see that person as an “easy target” therefore demonstrates an ingrained fear of success and were the “angrier” autistics.

I’ve already covered the way people mischaracterize me as “angry” as if it’s a personality trait, in a post called On the “angry” nature of my writing. But I’m not sure I’ve ever covered this interesting phenomenon whereby your contributions (real or imaginary) to a community are supposed to make you immune to disagreement.

I’m going to quote from Jane Meyerding’s excellent “snippet” called Discourse (I encourage people to follow that link and read the whole thing, it’s a really important statement):

I see this as part of the “psychologizing” of the culture. In the U.S., it used to be accepted as part of the democractic process — a necessary part of that process — for people to have and to discuss a variety of opinions/perspectives on any given topic. But now, psychology has replaced civil/political culture to such an extent that the primary objective is “do not hurt anybody’s feelings.” And if you express an opinion, you are seen as “putting down” (and thereby hurting the feelings of) anybody who does not agree with you.

The assumption seems to be that people are so fragile (in psychic terms) that they will be damaged by having their feelings hurt — and that their feelings will be hurt by contact with anything that does not “validate” them in every way.

I’ve never found anyone I totally agree with, nor anyone I totally disagree with. Given the complexity of human beings, this makes sense. To me, most people occupy some continuum of agreement and disagreement on various specific issues. Moreover, if I disagree with you on one thing, and I also disagree with you on another thing, that does not mean that the two points of disagreement are connected to each other.

I have, however, been told, in reference to many different people, “Please stop saying these things. [Insert name here] has contributed so much to our community. I don’t think it’s fair of you to disagree with things they have written or done. [Although "disagree with things they have written or done" is often replaced by "attack them", as if disagreement is attack.] Look how much they have contributed.”

I don’t get this. Everyone makes mistakes. Everyone. If people are not able to voice disagreement, whether correct or incorrect, then how on earth are the mistakes going to get questioned? If all disagreement suddenly becomes an attack on the person, and people who have “contributed a lot” (in some people’s minds, since the value of various contributions can be perceived very differently depending on who is involved) are conferred some kind of immunity to disagreement, then what exactly is going to happen?

Several years ago, I wrote an article about autism “experts”. The article stimulated debate in an autism forum. Some people agreed with it, and some people didn’t. Moreover, some people’s points of “agreement” seemed more valid than others, as well as some people’s points of “disagreement”. But I was glad that it was getting people to talk about those things. That was my goal as a writer at the time, and I considered it a compliment that they were taking me seriously enough to talk about these things in a forum where I only lurked, not posted.

Then, it happened. Someone invoked, not my “contributions” to the community, but my “fragility”. They said I’d put up with enough from the NT world and that I didn’t need people “attacking” me like this.

That was the first response I took offense to. They were effectively saying that I should not be taken seriously as a writer. That it was enough that I wrote, and people should either agree with me or shut up. That seemed very wrong, and still does.

M.J. Carley said that most “low functioning” autistics are not self-aware enough to consider suicide. I believe him to be wrong. I stated my reasons why. This is not considering him, the person, an easy target.

The only way in which this could be conceivably argued is something like, “I was on the GRASP website looking to see if a particular copyrighted article from autistics.org had been removed yet. It hadn’t. Then in the same section I saw these new articles, so I decided to read them, and then I came across this statement, and responded to it.” And I have to say, that’s really stretching things. The fact that I have ongoing copyright problems with GRASP and the fact that I disagreed with a statement are not related except in the sense of how I first came by the statement. If I’d come by the same statement, made by any other person, I would have responded the exact same way.

(By the way, if any GRASP people are reading this, seriously, linking to articles is fine, copying them wholesale without permission is not fine, and this goes for anybody’s articles, not just mine — I’m talking about in particular the “Theory of Mind” article from autistics.org. One of the authors is working under a pseudonym, and two including that one have not been involved much (one not at all) in the autistic community during the time when you put up the site. You need permission from all the authors to copy it. Also, last time I checked my own articles that you’d copied are not linked, but are still available on the site and hence through search engines. I’m fine, as I said, with you linking to those articles on autistics.org, but I would prefer if you did not keep copies on your website, even without linking.)

I can see how it’s easy to see all disagreement with a person’s views, as “targeting” that person, and as somehow related. It’s just not true, though. I once ran into someone who viewed disagreement, or even questions that might indicate disagreement, as hostility. I tried to find out why, and she said that she’d experienced a lot of hostility that week, therefore my disagreement and my questions (which were mainly on the order of “Uh… what did I do wrong??”) were also hostility.

This attitude when held by or about someone with power seemed, and still seems, dangerous to me. When Larry Arnold disagrees with Michelle Dawson on whether there’s a difference between autism and Asperger’s, it’s simply not the same thing as when Lenny Schafer (who agrees with Michelle Dawson that there’s a difference, but disagrees on what the difference is) launches an all-out smear campaign on Michelle Dawson that has nothing to do with her views or actions and everything to do with proving she’s not really autistic.

It would be wrong for me to tell Larry, “Look at all Michelle has done for our community. I think you and Lenny Schafer are just angry people looking for an easy target.”

And it’s wrong (both inaccurate and questionably ethical) to tell me the same for disagreeing on a point of opinion with Carley. Nobody has a right to freedom from disagreement.

Emotions: A time and a place.

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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.

If I am killed…

Standard

I already wrote a blog entry called When I Die. That one’s about how I want to be remembered. So this entry is about “If I am killed…”. In that event, which I really hope doesn’t happen, this is about how I want you to remember the person who killed me.

I don’t want you to blame “mental illness”. If it’s my parents, which it most likely won’t be, I don’t want you to claim that my father’s “Asperger’s” or my mother’s “bipolar” drove them to it. I don’t want you furthering the stereotype that “mental illness” or autism is an explanation or excuse for murder, by pitying the “sick” person who did this instead of condemning the act equally no matter what the person’s diagnosis.

I don’t want you to blame anyone’s desperation, either. If all the services in the world evaporate tomorrow, I don’t want to be at further risk of death than I already am from the lack of services. Saying “Desperation at lack of services made them do it” gives people the idea that this is at least a marginally, slightly acceptable act. It justifies acts like the nursing home murders in Hurricane Katrina. And if you think that you are just being compassionate, and that your “compassion” won’t harm anyone, you’re fooling yourself utterly. The more people say “Desperation made them do it,” the more risk I and everyone like me are at as soon as the going gets tough. There’s evidence that talking about these things in terms of the desperation of caregivers leads other caregivers to do things like this when they’re desperate.

I don’t want you to hate the person, but I do not want you to explain away what they did, either. The fact that I am autistic should not enter into any explanations of why the person did what they did, unless it’s meant in the exact same sense as killing me for being a lesbian. The murderer, if not already dead, will already be crafting some kind of explanation that paints them as, if not saintly, at least something close. I, and every autistic person who survives me but may not survive murder by their own “caregivers”, don’t need you helping them on that account. You don’t have to explain and excuse someone’s actions, to be compassionate, and in fact explaining and excusing their actions may be the opposite of compassion and love.

People have told me that this is black-and-white thinking, blamed the way I feel about this on my being autistic, told me how ugly it is that I think this way. No, this isn’t ugly. Murder is ugly. And no, this isn’t because I’m autistic, my views on this have been formed in part by the views of non-disabled parents believe it or not who don’t want their children put in harm’s way either. Fight for all the support systems you want, fight for all the positivity about autism you want, even do it in my name if you want, but do not ever claim that these support systems have failed my caregivers in the way that they have failed me, and do not ever claim that you are doing it because my caregivers weren’t supported enough and therefore they killed me. That insults all the people who have nothing and somehow don’t go around killing each other, and it, no matter how many disclaimers you put on it, is excusing the killing of people like me over the killing of ordinary people. If you think it won’t be used in that fashion, you are again fooling yourself.

I’m not saying this as someone who has never faced murder at the hands of a caregiver before, either. Because I have. Not once but several times. If I had died, my death would have been invisible, although it might have eventually turned up in a database like this one which includes data from several institutions I was at. You would probably not have heard of it, and it would have been an “accident” even when it was deliberate. And if I didn’t die, maybe it’s so I can tell you that some things are beyond excusing, beyond explanation, beyond anything even remotely right, and they should be treated as such. I do not hate the people who tried to kill me (they were not, by the way, family), but not for one moment do I excuse a single thing they did or explain it in terms of the burnout, desperation, and so forth that they would surely have described it in terms of.

Buy Four Sight and read the poem “Reflections from an Institution’s Graveyard” by Dave Hingsburger. Read everything else, too, but especially that. If the girl in that was a ghost, then, well, I’m some form of ghost too, only I’m alive enough to write about it, and I’ll quote:

“You thought I couldn’t
You thought I wouldn’t
But I do, I did, I will
I felt you kill
And love you didn’t.”

Murder is not love, and it’s not a single bit more explainable when it happens to a disabled person, nor a single bit more explainable when the murderer happens to have a label of mental illness. Every time anyone accepts those two things as explanations, they are doing a disservice to disabled people and to people with psychiatric labels. And these explanations are not compassionate, they’re deadly. Find some other way to show compassion, some real way. I’m with Ragged Edge on this one: Call it murder and don’t excuse it.

Why am I so adamant about this? Because I’m aware that, unlike a lot of people, I’m relatively well-positioned to be next, and I can’t afford the kind of fake “compassion” that would make that more likely.