Monthly Archives: May 2006

The staggering costs of the chair- and dark-impaired.

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I was accompanying a friend to the doctor a couple weeks ago, and we were sitting in the waiting room, both of us using wheelchairs. We had the following conversation, or something very like it (I won’t get the details right, but this is the gist):

Her (to my staff): We need to find you a place to sit down. I forgot, you’re chair-impaired.

Staff: Actually I’m okay standing.

Her (gesturing around the waiting room): Just look at all this furniture devoted to your special needs. Hospitals must spend thousands of dollars buying chairs for the… uh… chair-challenged. They require assistive technology wherever they go.

Me: Yes, as a matter of fact, you and I can take our chairs with us, but those poor walking people all have to find places to sit. Must be such a drain on society…

Her: It’s quite a debilitating handicap. And very expensive. Well it’s true! They seem to want chairs to appear everywhere they go, and that costs a lot, all those chairs per person. It becomes quite a burden on those of us able-chaired people who don’t need them. And how you can expect any quality of life… I mean can you say that’s a life that’s worth all that money?

Me: Don’t forget lighting costs.

Her: Oh yes, lighting must cost billions of dollars for all those sighted people who can’t possibly function in the dark.

Me: Don’t forget all the signage, and so forth.

Her: Of course, you and I are both in that category, we’re both dark-impaired.

Me: There’s actually a cure for that one. Eye amputation.

Her: Oh yes, and of course the cure should be mandatory because otherwise we’d have to spend all this money accommodating them, when we could just do a little operation…

Me: I forgot, there’s also a cure for being a chair-impaired person… or is that a person with chair-impairedness? But yes, eye amputation is an option.

Her: Wasn’t there an article about that once, how to accommodate dark-impaired people?

Me: I think it was How to Talk to Sighted People

Etc.

Now keep in mind when picturing all this, that she’s got one of those unmodulated loud autistic voices, and I happened to have my keyboard turned up to full volume. My staff apparently really enjoyed watching people’s responses, especially since both my friend and I have had people loudly talk about how much we cost, and so forth, in public, before. Most people apparently found what we were saying funny. Which is good, we were goofing around and trying to keep our minds off the fact that we were in a hospital waiting room. But there was a serious statement somewhere in there about all this “social construction of impairment” stuff.

Nightline, and why I can’t tell you a lot about it.

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I have been asked to blog about a particular topic: The show on “Nightline,” ABC, tonight, called “Paul in Love”. I have not been specifically asked, but asked as part of a group.

Aside from pointing out that there’s something really wrong with grown adults having their (real or otherwise) faults dissected on national television by their parents, and the fact that very few people of any type would (or should) consent to that, I can’t blog about it.

I know what I want to say, and I know that it will probably only get translated into words after the show has aired, if then. My brain and deadlines, or even demands (my own or others’) of what topic to write on, are not all that compatible.

That probably isn’t what the person asking us to write on this had in mind. It’s rarely what anyone asking me (whether alone or as part of a group) to write things has in mind. It’s quite inconvenient at times. But there it is.

I’ve encountered several areas of pressure to write, or respond, faster than is possible lately. I’m not super stressed out about it, mainly because I’m refusing to at this point even entertain the idea of conforming to that pressure. I don’t blame the people doing it, because they probably don’t know what they’re doing.

But as I am discovering, my brain and the demands of a world not designed for this particular slower wavelength of processing, are not compatible. The more I stress and force-focus, the less useful work I can get done. Occasionally it’s necessary to use that kind of forceful focus, but it comes at a pretty high price for awhile afterwards, so it has to be reserved for particular occasions. The rest of the time, I’m starting to think that force-focusing based on most demands for it is counterproductive, given that I get more done when I don’t do it, than when I do.

So meanwhile, I can tell you all about assorted inner workings of the writing process, but I can’t tell you what I think of the entire premise of the impending “Nightline” episode. And so it goes. Maybe I’ll tell you about “Nightline” tomorrow, maybe by the next time an episode like that occurs, maybe never.

But I do think I’m going to try to stop getting into situations where people want me to, or even depend on me to, Do Things Right Away, because it’s not just a matter of not wanting to, it’s a matter of really not being able to sustain that kind of thing for long enough to be useful, the majority of the time.

Assorted psychiatric distortions.

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When I spoke about having been locked up and how awful it was, people would be very sympathetic and say a mistake had been made in my case, as I obviously wasn’t mentally ill. Even though I would explain that I had been as crazy as anyone had ever been, with all the classic signs of what is called schizophrenia, I don’t think people believed me. They didn’t understand. Yes, I had been mistreated as an individual, but what had happened to me was still happening to thousands of others.

Irit Shimrat is a Canadian activist in the mad movement, who wrote the book Call Me Crazy from which that quote is taken.

Prior to being locked up, she had believed that there was a massive worldwide conflict in which she could tell the good guys and the bad guys at a glance. She wore sunglasses because she believed that looking someone directly in the eye could kill them, and she believed she was invisible when she stole the sunglasses to use for this. God talked to her through an alarm clock. When she was locked up and put in an isolation room, she stuck her finger up her butt and wrote symbols in the wall in crap to try to unlock the door and free herself. She finally agreed to take the drugs they wanted, which didn’t stop her from being crazy at all, but did get her out of seclusion.

She eventually started thinking straight again, but it took months. Much later, when she was doing a lot of work against psychiatry, she went crazy again. As she put it:

I thought it was interesting that the first and second time I went mad, I got professional help — hospitalization and drugs — and stayed crazy for months, and the third time I got help from a friend who wasn’t scared because she’d been there herself — and it was over in a few hours.

There is something very interesting in all this that is not supposed to be mentioned, somehow: That a lot of people do better without psychiatric drugs than with them.

The classic response, so classic that it is to me a cliché, is to say, “But there are severe mental illnesses for which medication is necessary,” or else “These people did not have the real version of these illnesses.”

Note that I do not believe that “mental illness” is even an appropriate term for these experiences, because it is loaded with assumptions about the causes and nature of the experiences, that are simply not proven or true. For instance, as I am reading the text on this screen, I am sure that if you scanned my brain, you would see certain regions lighting up that are not normally lit up. Yet you would not say “These brain regions lighting up cause the text to appear on the screen.” Saying “These brain regions lighting up cause the text to appear on the screen” is exactly equivalent to what people are doing with terms like “depression” and brain scan studies. They are saying the brain spontaneously causes a disease called depression, therefore treating neurotransmitters will cause the brain to stop causing this disease, basically.

This is not to say that neurological variation doesn’t exist, but that the assumption that all things classified as “mental illness” are true diseases and truly caused by neurological variation, is incredibly suspect in many areas, including in terms of the so-called “treatments”.

But one of the most damaging aspects of this model is this:

When I say that I handle life without psychiatric drugs, it is assumed that:

  1. I do not share certain experiences with people who “need” psychiatric drugs.
  2. I do not share as extreme experiences as people who “need” psychiatric drugs.

Just like Irit Shimrat and the nebulous concept of “schizophrenia”, I have experienced every recorded aspect of what psychiatry calls depression.

I have not just “gotten sad,” I have felt that life has no hope and that every instant was taking a century and that soon I would find it unbearable. I have felt too bad to even cry. I have been unable to move, not because of the difficulty I have with movement ordinarily, but because I could not muster the will to move an inch. I have made serious, but fortunately clueless, attempts at suicide. I have felt like I had no mood at all, no interest in doing anything. I have felt like I am the most horrible person on the planet and deserve death to rid everyone of my presence.

I experienced those things for many years of my life. I do not now experience any of those things.

Here is the part where I am supposed to tell you about the wonderful drugs, or the wonderful electroshock that would help me. In fact, I would have made a good candidate for electroshock by psychiatric standards, because I was totally unresponsive to anti-depressants of any kind. They screwed me up several ways at a time, and did nothing to alleviate my overall mood.

And that is the part where everyone says “Well misdiagnosis occurs and that is really horrible and all but it doesn’t have anything to do with people who have real, severe depression. You did not have a real mood disorder.”

Well… no, that really sounds like a cop-out to me, a quick and easy but wrong explanation. I experienced those things because of a combination of circumstances and learned reactions to circumstances. When I changed both the circumstances and the reactions, suddenly I began to be genuinely happy (not just a mood, but an overall sense of things) for longer and longer.

This did not happen overnight, and it was not an easy “snapping my fingers and it’s gone” thing, it took years of concentrated effort, and the effort had to be in the right areas. I had made an effort in the past, but trying really hard to run north, east, or west doesn’t help when your destination is to the south. It’s not just a matter of how much effort is put in, but of whether you know where to direct that effort. Otherwise you end up exhausted and feeling just as bad as when you started.

But I’m not supposed to say any of this, because saying this supposedly relegates “depression” to “a matter of willpower” and therefore “the fault of the person”, or that “only weak people take psych drugs”. No, not really, that’s not where I’m coming from. At all.

I don’t blame anyone for being, or staying, within the experience that some people call “depression,” because I don’t think that anyone would willingly subject themselves to that. I also think there are external factors that can make such an experience far more likely, and patterns of thinking that perpetuated it are not something to be hand-waved lightly away, or else they would not cause so much suffering, the person would just wave them away themselves.

But what do I know? I couldn’t really have been “mentally ill”, or else I would have taken my drugs like a good little girl, talked all about my “debilitating mood disorder” that was a “neurobiological disease”, gone to NAMI meetings and shut up about what really made me feel better. But my experience, and the experience of Irit Shimrat, are not isolated, random experiences, but incredibly common ones. The main uniqueness in any of our stories is that we have managed to stay away from the system long enough for this to happen, not the sort of people we are intrinsically.

(To be clear: I don’t care what anyone puts into their bodies, I’m pro-choice on that matter. But I do think that there is massive persuasion going on, that tells people they “have to” put certain things in their bodies in order to feel better, and thus “informed consent” often is neither informed nor consent. Telling someone that if they do not take something, they are likely to die, is not choice, especially when it is not true and the opposite may be true.)

So if you see someone talking about how a drug made them feel worse, or talking about how they stopped being a certain way without drugs, or talking about how they accept the way they are, please don’t say, “Oh, here comes another misdiagnosis” or “This person clearly doesn’t understand the suffering involved in severe insert-psych-label-here.”

It may be that they have had all the experiences that traditionally are a part of that psych label, but bad experiences with drugs or good experiences with things that are not drugs. As far as I know, human experience is not defined by whether people having that experience respond a certain way to drugs thrown at them by a profession that really has much less clue what it’s doing than it claims to have, and that is not even a true branch of medicine to begin with.

I am tired of, on the one hand, having my life experiences categorized as a form of illness, and on the other hand, being told that I don’t actually have those experiences just because neither my mind nor body toe the line in response to pseudoscientific “treatments” of said experiences. (Oh, and please don’t call me a $cientologist for saying this, they’re just as bad as psychiatry, thanks.)

Memorial to Katherine (Katie) McCarron

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[Note: This is my personal response to the murder of Katherine McCarron. For my more political response, read Background, to the foreground.]

Face of very young child staring at somethingDear Katie,

You don’t know me. You will never know me. You were murdered when you were three years old. But we have something in common: We are both autistic. Both of us have brains that work differently than usual, perceive and respond to the world differently than usual. I wish I could have known you. I bet you were a beautiful and interesting child.

These pictures are of me when I was around your age. I can remember being your age. I remember colors, smells, sounds, and the way the world seemed like a neverending kaleidoscope of experiences, many of which I didn’t understand the way typical people understand things, until later. But I was there, I was experiencing them, in my way, just as I bet you were.

When the first picture was taken, I was getting lost in the deep red-brown color of the hillside that I was facing. In the second picture, I was playing with some fish in the backyard. In the third picture, I was doing what became one of my favorite things to do for many years: Climbing trees. I sometimes had an easier time getting around in trees than I did on the ground.

I wonder if you would have liked any of the same things I’ve liked at different times in my life: Trees, books, marbles, blocks, staring sideways at the carpet, playing with my hair, running, stars, flat surfaces, taking walks, staring at everything upside-down, cats, rubbing fuzzy things on my face, getting pine nuts out of pine cones, picking blackberries, having mischievous but loving older brothers, light switches, sparkly sidewalks, rocks from the moon, typewriters, sliding tape measures, and prisms.

Little kid holding a fish by the tail while another fish lies on the groundThere have been a lot of horrible things in my life. Things that shouldn’t happen to anyone. I guess you knew about horrible things, because dying of suffocation is pretty horrible. I think I came about as close to that as I could get while surviving (physically) unscathed, on a number of occasions. But it wasn’t my mother who tried to kill me. She and I both had some really difficult times when I was growing up, including times when I was going to be taken away from her, times when she was blamed for my being autistic at all, and she had nothing like the support that exists today, but she loved me enough to fight for my life, not my death, even when people were telling her my life didn’t matter.

If you had lived, you might have experienced some of the other horrible things that exist in the world: Bullying from other children, institutionalization, being drugged into a stupor, abuse, and all the other things that are unfortunately common in the lives of autistic people. What they don’t tell you, is that all those good things I talked about, still exist, even though the bad things exist too. They don’t tell your parents that even if you never do a lot of things, there are still things you can do, still ways you can be, still things you can enjoy. And they don’t tell your parents that most people like us can do a lot more than we’re expected to.

I’ve had twenty-two more years in the world than you have, and there’s a lot of things that I still can’t do. When I was growing up, I didn’t get to see people like me doing what I am doing now, so this was a total surprise to me. I live in my own apartment. I get help with the things I’m not good at, that most people are good at. I have friends of kinds I never would have imagined or expected. I have people who care about me and understand me, who value me as who I am, not who I am not. I have a way of communicating that is fairly stable and reliable. I still have to fight for a lot of things, and life is still unbelievably hard at times, but I still sometimes have trouble believing that I’ve found some of the good things I’ve found. Not bad for someone who was ten years ago described by doctors as unsalvageable, which was their own lack of imagination in action.

There’s even a number of communities of autistic people. I don’t always get along with them, but maybe you would have. Even though I often find trouble in these communities, the people in them still understand me better than most people do, and I have some close friends there. That level of understanding was unthinkable most of my life, and so were most of the things that have happened to me since I grew up. My childhood was not remotely blissful, but adulthood has been worth it, and I wish that you could experience what this is like.

Little kid climbing a treeUnfortunately, the horrors that happened to you are not isolated. They almost happened to me, too, and although I didn’t always understand the significance at the time, it was still awful. The people who suffocated me laughed as I struggled, I wonder what it was like for you. The day after you died, a 19-year-old autistic man was killed by his parents in a fire. I read that he liked photography. I was his age before my life started beginning to turn into something more enjoyable than it had been in a long time. I was about 15 when people, unknowing of that future, were trying to kill me. People were undoubtedly sure you had no worthwhile future, but the only way to ensure that someone has no worthwhile future is to kill them.

Your future was totally cut off. So was the 19-year-old man’s that I just talked about. You will not have a chance to experience any more of the bad things in life, and that’s what a lot of people will want to focus on, they think your life would have been only misery and pain. But as far as I can tell, the good things outweigh the bad even in a very hard life. There are even good things that autistic people are more likely to experience, and then there are good things that are just part of the human experience in general. And I know that nothing will ever give you another chance to experience those good things, that future that people probably never expected for you, even that past in which there were surely many good aspects of your life. For that, and for the fact that neither I nor anyone else will ever get to know you, I am incredibly sad.

You could have had a wonderful and interesting life beyond anyone’s imagination for you. Now that is gone, and nothing can replace it. And you will never read these words. Your life, and your story, has ended forever.


This post is part of Katherine McCarron Memorial Day, by the Autism Hub. On Wednesday, May 24, people will post memorial messages about Katherine McCarron. The next day, the hub will be closed in her memory. Other participants so far:

Kevin Leitch | Dad of Cameron | Mike Stanton | Bartholomew Cubbins | Not Mercury | Mum Is Thinking | Kassiane | Autistic Bitch from Hell | Janna | Zilari | Autism Diva | Kathleen Seidel | MOM-NOS | Kristina Chew | Rose | Joseph | MothersVox | Jonathon | Aspie Dad | Lisa

Participants from outside the Hub:

Laura Cottington

Background, to the foreground.

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“If you’re watching it, you’re part of it. If you’re close enough to see it, you’re in it. There’s no line drawn dividing the two.” —Tony Carey, in a spoken-word introduction to the last song of his most recent album, which is the first in a three-part series about learning from history

He is responding to the widespread belief that there are those who do things, and those who observe, and that those who observe, are separate, and apart, and not participants. He is saying this is an illusion, that everyone is a participant, and that seeming failure to act is — whether correct in that situation or not — an action in itself, with repercussions, for better or for worse, on everyone else involved. Not a non-action.

Zilari blogged recently that blogging in public entails a certain amount of responsibility. It is not an expression coming from nowhere, sent off into nowhere, but something that is read, affecting the thoughts and actions of other people to greater and lesser extents. The Autistic Bitch from Hell concurred. And I concurred privately, although it took me awhile to organize my thoughts into these words for this post.

There’s a sense in which inaction is perceived as background, not foreground. I’ve always thought that in those tests where they see how much a person looks at the background and how much at the foreground of pictures, I would look a lot at the background. There’s a lot of detail in there that people miss, a lot of things that are at least as significant as what people are trying to draw your attention to, that influence and are influenced by the foreground.

My ability to see the background gives me certain social skills that not everyone has. While people are busy trying to deceive me through facial expressions and hand gestures that they imagine are the focus of my attention, I have often caught subtle variations in movement, rhythm, and smell that they are not controlling and that may not even be on their faces or hands. In some cases I have missed the deceptive expression entirely and gone straight to what they were trying to hide.

Not that I am perfect at this, I am not a magician, just someone with an unusual social skill, although it is not as unusual as many would think among autistics. It’s not tested for because most people wouldn’t even think to test for it, and some of the tests of reading people explicitly confound it by restricting the range of correct answers, the aspects of other people that are supposed to be read, and the role of deliberate conscious effort in warping perception.

I believe this attention to only certain aspects of a person as “foreground” also account for the fact that I’m regarded as unreadable and potentially empty — or else read completely backwards — by a large number of people, but yet there are many people who can read several accurate levels of meaning in my so-called “background” aspects. It is not that I am inherently mysterious as a personal quality, but that people don’t know what to look for.

“Background” is often seen as some combination of taken for granted, static, passive, imperceptible, uninfluential, uninfluenced, devoid of accountability, empty, neutral, and non-existent. Since it is usually the opposite, and since everyone has something that they perceive as in this category without being aware of it, this is one thing that makes it so interesting and important. And overlooked.

If we do not perceive it, it is not there. If we do not perceive the origins, there are none. If we do not perceive the effects, there are none. That is how people tend to think.

When people wanted me to look at a very specific foreground on Autism Every Day, I spent most of my time exploring the “background”.

The questions that they wanted me to ask, and answer, were about the feelings of the mothers in the film, one or two specific things they viewed as causes of those feelings, and one or two specific things they wanted me as the viewer to do as a consequence of those feelings.

Instead, I looked at things like, what were the children, non-autistic and autistic, feeling and experiencing? What size, shape, color, and style were the rooms, houses, yards, schools, parks, clothing, and cars? What aspects of their personal and cultural backgrounds really caused those mothers’ emotions to be as they were? Who would be harmed by this particular usage of those emotional reactions as propaganda? Who was left out of or sidelined by this portrayal of things? Where were the fathers? What was everyone like when they weren’t on camera? What were the real consequences of this video for autistic people? What were the subtle reactions, and non-reactions, of the people in the video? Who looked the most oblivious, the auties or the non-auties? What was left out? What could I tell from what they chose to leave in, how they chose to edit it? What, off of the video, was the status and affiliations of the mothers in the video? What would happen if some of the mothers stopped spending oodles of money on probably-unuseful therapy and oodles of energy grieving and freaking out, and used that money and energy elsewhere? What caused the mothers to view their children as unresponsive when the children were clearly responding to their environment in a great deal of ways constantly?

And so on and so forth.

In other words, I was looking at everything I wasn’t “supposed” to look at and then some. I was not doing this entirely on purpose. I was doing this because this is what I do, the same way I can’t really help looking at the so-called “background” of people’s movements rather than the “foreground” image they are projecting.

Once, I was watching a Getting the Word Out video with a non-autistic person present. I grumbled a bit about it and the person said, “But what if she really feels that way?” She was very agitated that I would question someone’s “feelings”.

The Getting the Word Out video was of course a very carefully crafted piece of propaganda, which Kathleen Seidel dismantles beautifully in her blog post about it. It was not a person’s random expression of their feelings.

But even if it was her feelings.

So?

It is many people’s honest feelings that women are inferior to men, that Jews or Muslims are inferior to Christians, that people of color are inferior to white people, and so forth. Some people will even go so far as to advocate killing people for being in any of those categories, or to have considered killing people for being in any of those categories. Some societies sanction such killing, either explicitly or tacitly.

The “feelings” that people have, do not spring out of nowhere, of course. They are learned, through countless little “background” attitudes that are not questioned. They are reinforced through several well-known cognitive loops, and through subtle and not-so-subtle propaganda (it is the nature of propaganda, like the Autism Speaks video, to be persuasive).

The “feelings” that people “express”, do not go nowhere, any more than they come from nowhere. They affect people, they affect other people’s attitudes, they may reinforce or contradict attitudes in the dominant culture. When they reinforce attitudes in the dominant culture, and the “feelings” stem from highly destructive attitudes to begin with, these are not innocent expressions of feelings. Particularly not when expressed in a method meant to be viewed or read by a national or international audience. Publishing is public, it is different from having feelings in private.

When someone publicly expresses a desire to kill someone based on a particular characteristic, uncritically, in a culture where the lives of that kind of person are already devalued, the technical term for this is hate speech. Hate speech is kind of like slander or libel, only instead of smearing the perception of the character of one person, it smears the perception of the value and worth of the lives of thousands or millions of people.

“What if a person really feels that way?” Well, then they feel that way. And? As I said before, feelings don’t come from nowhere, and they do not affect only the person having them. They do not go to nowhere either, when expressed. There is a cultural trend at the moment that says that everyone has the right to express any feeling anywhere. Rights usually go with responsibilities. If you publicly express the “feeling” of wanting to kill someone, you have a responsibility to express it in a way that won’t make it sound remotely okay, and that goes double or triple if the person you want to kill is part of an already-devalued group. Your “right” to express your despair or self-pity whenever and wherever and in whatever manner you feel like, does not trump other people’s right to be safe (which, regardless of group-therapy trends, is not the equivalent of “feeling emotionally safe”) and alive.

Nobody who is aware of something is truly a bystander. We are all part of the culture that currently contributes and responds to the devaluation of the very lives of disabled people, including autistic people. How we respond, especially publicly, to the notion of some kinds of people being more disposable than others, some murders of innocent people being more understandable than others, has a part in shaping these attitudes. Reinforcing them, or fighting them. Every one of us is part of this, whether we know it or not, whether we feel like it or not, and whether we want it or not. It’s not optional.

When someone publicly states, “I understand the despair that drove the mother to feel that way,” they have a responsibility not to simply leave it at that. There is a difference between despair and homicide. There is an enormous difference between despair, and wanting to kill one child with a devalued characteristic but staying alive only because you have another child without that characteristic. One less-worthy child, one worthy child. If you don’t point this or something like it out when you publicly identify with that mother’s “despair,” then you are effectively strengthening her voice. If you don’t heavily weight things so that your identification with that despair is drowned out by the wrongness of the act, then you are effectively strengthening her voice. It’s not enough to add a tiny sentence saying “But it was wrong,” in the midst of a flood of opposite sentences. It’s the overall tone that people will remember.

Identification with people’s feelings is a powerful thing. When you identify with certain feelings, you are less likely to view anything done by someone with those feelings as wrong. Your identification with those feelings might cause you to add your voice to the “expression” of those feelings without adding your voice to the condemnation of some of the ways those feelings are “expressed”. Your identification with those feelings might leave you more susceptible than average to clever, calculated propaganda that plays on those feelings. Your identification with those feelings might even make you hostile to anyone who says there are wrong ways and times of expressing those feelings. I don’t know how many people have claimed that I hate parents or attack parents, merely because I don’t think it is ever okay for someone to publicly, without heavy qualification, say things like “I’ve wanted to kill my child because of who she is.”

I should note, by the way, that for many of us, mere expression of the intent to kill someone “valuable” is enough for involuntary commitment as a “danger to others”. In one case, a man in South Africa was jailed for eight years merely for planning the murder of his son. I am not advocating involuntary commitment, but there is an enormous disparity when people can say these things for national or international audiences without someone at least calling Child Protective Services.

It should be noted that public dehumanization of this nature is considered the third stage of a potential genocide. “Dehumanization overcomes the normal human revulsion against murder.” -Gregory H. Stanton.

We have a responsibility to combat that dehumanization wherever possible, and that responsibility overrides any individual “right” to express one’s “feelings” all over the place. It also interests me that so many people who have had these “feelings” are so hurt by the concept that they shouldn’t “express” them everywhere, view themselves almost as being oppressed by the notion that they shouldn’t.

To anyone who feels that way, take a serious look around you. Look at how often “feelings” like yours are “expressed” right and left, with near-total impunity, while people who say “Hey, murder is wrong” are more likely in these instances to be castigated for disagreeing with these “feelings”. Look at how often the murder of a disabled person is considered okay, and the murder of a non-disabled person is not. Look at how safe non-disabled people are in these circumstances, even at times from punishment for murder, and how totally unsafe disabled people are, even from murder. And then come back and try to look all “oppressed” for us again. A lot of us won’t buy it, although I’m sure the majority of the surrounding culture will, and will give you all the sympathy and pity you ever asked for, while condemning those of us who speak out against it as trampling on your ever-important feelings. Between our lives and your feelings, I know which I’d choose.

Mark Puddington“Did she just say what I think she said? On national television?”

My staff nodded grimly.

I was at her house, watching The Mayor of the West Side, a movie about Mark Puddington, a teen with Cornelia de Lange syndrome, and his entangled and disturbing family dynamics.

His mother was overprotective, believed she was the only person in the world who cared about him, couldn’t imagine him living without her, frequently prevented others from helping him become independent of her, and had just announced to the world that she still thinks that maybe she’d have to “take him with her” when she dies rather than allowing him to live without her.

In other words, she’d announced intent to possibly kill her son in the future. Throughout the rest of the movie, she never retracted her statement, and nobody seemed to be saying anything to her about it. I saw no involvement of Child or Adult Protective Services, nothing. I still worry about her son.

There’s love between them, but on her side of the relationship there’s something else that’s more disturbing than plain old ordinary parental love. There’s the mentality shared by animal hoarders, who believe nobody could care better for animals than they could, nobody could love animals like they do, and who consequently have too many animals to take care of, so the animals start dying. Some collectors go on to keep the corpses of the animals around, either preserved or rotting.

I am not saying that “disabled people are like non-human animals,” there. That is not my intent. What I mean is that there’s a kind of attachment that goes beyond love into a complete detachment from reality where the object of said love is concerned, whether that object is disabled, non-disabled, human, non-human, etc. I saw that kind of reality-warped attachment so strongly in the mother in that video that I still fear for her son’s safety.

In 1983, Adam Benjamin Clark was murdered. (Corrected to say: His mother’s boyfriend was convicted of the murder, not his mother. See comments for more on this.) His older sister Amber has a memorial page called Remembering Adam, which includes her account of what happened, newspaper accounts, and their father’s photo essay. I have to warn you that I’ve never been able to read it without crying.

Adam Clark’s mother tried to blame her son’s death on Cornelia de Lange Syndrome making his body fall apart. (Cornelia de Lange Syndrome, even when aspects of it become fatal, does not cause the kind of injuries Adam Clark had. The potentially fatal aspects usually have to do with internal organs like the heart or digestive system not functioning properly. Adam Clark died of crush injuries.)

I’d known about Adam Clark since long before I’d seen The Mayor of the West Side. That was one of the things that made the mother’s statement so horrifying. I knew that this sort of thing was something that really happened, and that happens to disabled people more often and with more impunity than it happens to non-disabled people. I knew that for many people, the mother on the screen would have words that went unquestioned: “It’s just her feelings. Harmless. At least she talks about them.” And I would know that were her son not disabled or some other devalued category of person, nearly everyone would question her words. She did say this. On national television. And who besides me commented? Did anyone notice?

Allison Tepper Singer and her daughter“She’s saying it for an international audience.” This time I was not so shocked. I was watching Autism Every Day. And by now anyone who’s read the Autism Hub blogs for long knows what was said. Again, no sign of Child Protective Services.

CdLS can cause a person to be autistic, and usually has definite visible physical signs. Nobody thinks of people being cured by it, except by the usual eugenic elimination procedures. Some forms of it can kill though. Like the Rett community that Autism Diva describes in the post I just linked, the CdLS community mostly focuses on their love for their beautiful children and on how to identify them, teach them, and keep them healthy and happy. The disturbing stuff is still out there, as I mentioned above, but it is not as dominant as in the autism community. Parents of autistic children without identifiable things like CdLS or Rett’s, still hold out hope of a cure and hold massive pity-parties for their children’s mere existence, even though most of their children are not facing the potentially life-threatening consequences that children with CdLS or Rett’s are. Although some of their children do undoubtedly have things like CdLS or Rett’s that is undiagnosed, and like Autism Diva I wonder how they would have to change their approach if they found that out.

At any rate, Allison Tepper Singer also described, in a high-profile video distributed internationally, wanting to kill her daughter for being autistic, but only stopping herself because her other daughter was non-autistic. If anything ever happens to her non-autistic daughter, I fear for the autistic daughter’s safety just as I fear for Mark Puddington’s.

On May 13, just before Mother’s Day this year, three-year-old Katherine McCarron’s mother murdered her by putting a plastic bag over her head and suffocating her, for being autistic. Instead of people writing to the newspapers and the district attorney to say that autistic children need to be protected from this, most people I’ve seen have been writing to the newspapers and the district attorney have been writing to support the mother.

On May 14, Mother’s Day, in Albany, Oregon, 19-year-old Christopher DeGroot’s parents locked him inside their apartment and then set the apartment on fire. He died in the hospital. He, also, was autistic. Someone on a closed mailing list I am on, said basically, “Expect more sympathy for the two cats who survived the fire than the autistic man who didn’t.”

These are two people who will never, ever experience life on this earth, or any feelings, good or bad, again. They are gone. Everything they were or could have been has either vanished or been sent to the afterlife, but it is not here right now. These are two human beings who have been murdered. That these facts are going to be shoved into the background, to focus on the feelings of the murderers as foreground, is appalling.

The majority of support, anywhere, is going to go to the “feelings” of their murderers. I have a friend who runs the Murder of Autistics webpage, and he gets angry letters from the families of the murdered autistic people, not angry because they were murdered, but angry because he steps on the families’ “feelings” by portraying it as just as horrible as the murder of anyone else. How about showing some support for the feelings and lives that Katherine McCarron, Christopher DeGroot, and Adam Clark, will never have? Our reactions are not merely those of uninfluential, uninfluenced bystanders, we are people within a society, and our action, or inaction, will affect a lot of people. I know what my reaction will be: To bring the “background” that these people’s lives and futures have appallingly become, into the foreground of the discussion. These are innocent people, some murdered, some always in danger of murder, and the not-so-innocent are the ones most people are going to want to sympathize with here.

Condensed old-post response to twisting of experiences

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Eyeballs eyeballs eyeballs

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It’s been a long time since someone’s really been insistent with the eye contact while I’m squirming and trying to get away. I noticed today exactly how much I react to that.

So I’m sitting there in a doctor’s office, and he’s leaning towards me and sticking his face up to mine.

And I’m sitting there trying to think in a way that, were it in words, would go something like this:

Okay… he’s got to…. EYEBALLS EYEBALLS EYEBALLS he’s got to be unaware… EYEBALLS!!!! …he’s… uh… eyeballs… uh… EYEBALLS!!!!!!!!! people like him think this is EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS …some people think… EYEBALLS!! …some people think this is friendly… EYEBALLS!!!! EYEBALLS!!!! EYEBALLS!!!! he really doesn’t mean anything EYEBALLS EYEBALLS EYEBALLS he doesn’t mean anything EYEBALLS EYEBALLS he eyeballs doesn’t eyeballs mean eyeballs anything eyeballs bad EYEBALLS EYEBALLS he doesn’t understand why I’m turning EYEBALLS EYEBALLS EYEBALLS why I’m not coming up EYEBALLS why I’m not coming up with words EYEBALLS EYEBALLS EYEBALLS oh crap hand going banging head EYEBALLS EYEBALLS oh crap not right thing to do EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS stop hand now EYEBALLS EYEBALLS EYEBALLS is he saying something? EYEBALLS EYEBALLS am I trying to type something? EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS oh crap better remember EYEBALLS EYEBALLS remember EYEBALLS what I’m trying EYEBALLS what’s he saying? [shading eyes as if staring at sun] EYEBALLS EYEBALLS EYEBALLS am I saying something? EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS what’s going on?  EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD… segmentation fault

Etc. Until I finally reached some point of shutdown. And where every EYEBALLS is not just the picture of eyeballs but of something very threatening about to eat me or something. I unfortunately in all that couldn’t figure out how to tell him that it was his eyeballs that were unnerving me, and I’m not sure I did a very good job of convincing him that I’m not that freaked out all the time. It wasn’t just eyeballs either, it was leaning at me with eyeballs. I tried briefly to remember that people like him consider eyeballs to be friendliness, but it got drowned out in the swamp of eyeballs, and all thinking got drowned out in the end in a sea of fight/flight.

Note to anyone who interacts with me: Eyeballs do not help, unless by “help” you mean “extinguish everything but eyeballs and fear”.

My whole family is not autistic.

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I am saying this from the point of view of someone whose entire family is neurologically atypical in some (often significant) way, and the majority of my immediate family is autistic: My whole family is not autistic.

I’d begun trying to write about this before Wade Rankin of Injecting Sense wrote an entry on Autism Every Day saying:

It’s not just the child who gets autism; it’s the whole family. And the family is autistic all day, every day.

No.

I live over 3,000 miles from my parents and brothers. One of my parents is autistic, and one of my brothers is autistic. My other brother, and my mother, are not autistic, any part of the day, even if one or both are BAPpy.

No matter how involved in my life they are, they are not living my life. They are not experiencing what it is like to be autistic, they are merely experiencing, some of the time, what it is like to be in the proximity of autistic people, to love autistic people, to care for autistic people. There is a difference here.

This difference is often glossed over. People other than autistic people are said to write “first-hand accounts of autism”. Would a man dare write a “first-hand account of womanhood” because he married or raised one? Parents who are not autistic often call themselves “autistic parents,” thereby muddying the waters for those who are actually both autistic and parents. Would a man call himself a “female husband” or a “female father” just because he’d married or fathered a female?

This distinction is nonetheless important. It reflects whose voices get heard. If the non-autistic family members are viewed as having equivalent levels of experience with autism as autistic people do, then it becomes a little less important to hear from actual autistic people. After all, we can get “first-hand” accounts of autism from non-autistic people, and non-autistic people can call themselves autistic based on mere proximity with us. What would be the need for genuine autistic perspectives?

Not that non-autistic people’s perspectives are not important. But here is something Cal Montgomery says about these sorts of perspectives:

Publishers continually crank out books about the tragedy of disability, of which most may be classified as memoir by proxy: Nondisabled writers write not as representatives of their own experience (or observers of others’) but from the imagined experience of someone who has not licensed the portrayal. The best of these grapple with the limits of what the proxy can know, and struggle with the complicated responsibilities that arise when the choices seem to be either “speaking-for” or allowing the experience to go totally unrepresented. The worst, by writers who prefer spectacle to truth, invite nondisabled gawkers to a sideshow starring an alien mind in an alien life.

— Cal Montgomery, in Whose Movement Is It Anyway?

If my family had abandoned me, I would still be autistic, and some of them would not.

If my family dies, I will still be autistic, and some of them will never have been.

I believe that using “with autism” has become more than a cute little word-game in these instances. It has allowed people, particularly very word-minded people, to view “autism” as something that is not necessarily inseparable from an “autistic person.” It’s only one step from there to seeing “autism” as a thing that exists within a family, like an unwanted uncle that lives there and won’t move out, and that is no longer attached only to autistic family members, but instead to all family members. This separation of autism from autistic people is inaccurate. There is no such thing as autism. There are only autistic people. Autism is an abstractified version of a quality of autistic people, not a thing that can be possessed by, or that can possess, a person or a family. Putting autism separately from a person allows the word-bound to view it differently than it really is.

I was talking to Laura Tisoncik, a friend of mine who’s autistic, about staff. She was commenting about how they get respite hours in which other staff take over for them, to prevent them burning out. She said, “When do we get respite from burning out on them?”

The role of the caregiver (often but not always a non-autistic person — I’ll be temporarily in that role tonight, for another autistic person, who has been in that role for me at other times) tends to be, popularly, valued and celebrated as selfless and self-sacrificing. The role of the caregivee (when dealing with autism, usually an autistic person) tends to be, popularly, viewed as burdensome, an imposition on an otherwise normal life.

A caregiver can walk away. Even if they didn’t want to. Even if they never would. Even if they would not find it ethical to do so. They are capable of doing so. The possibility of escape is there.

A caregivee cannot walk away. There is no possibility of escape short of learning skills that for a lot of us are impossible.

There are entire organizations set up for the purpose of dealing with “caregiver burnout”. Which is a real problem. But it’s a recognized problem. And when it happens, people often hear things like “You can only take care of others for so long, it’s time to take care of you” and “You’re so selfless, you deserve a break” and things like that.

But people who receive assistance experience burnout too. We learn to try not to ask for more than the bare minimum of what we need. Often, “non-essential” aspects of the relationship go by the wayside as a result of the power imbalances. We are aware that, no matter how much the person frustrates us, we depend on that person for essential aspects of daily life, and therefore we cannot show it without possible penalties. We know that we can’t walk away.

If we get burned out, or even if we object to the way someone is doing something, we’re more often labeled ungrateful and selfish. “Be glad you get anything at all.”

Moreover, when “burned out” caregivers attack or even murder their caregivees, it’s often said, “Well it’s tragic, but it shows how burned out we can get.” When caregivees attack or murder our caregivers, then the whole group of people we belong to is classified as potentially dangerous, our caregivers are given more sympathy for having to put up with people like us, and all of us stand in danger of losing basic civil and human rights.

Of course, selflessness is not defined by giving, and selfishness is not defined by taking. Selfishness is about being wrapped up in your ego, and it can be just as selfish to refuse help you need, as to refuse to give help you can and should give. Selflessness is being less wrapped up in your ego, and it can be just as selfless to accept help you need, as to give help you can and should give. People can give “help” in selfish ways and receive help in selfless ways, as well as give help in selfless ways and receive help in selfish ways. Most people engage in a mix of both, not one or the other, no matter which side they’re on, and most people are on both sides of such relationships, not just one.

But the way such relationships are often portrayed, is very one-dimensional and one-sided, and uses standard views of giving as always selfless and taking as always selfish. We become burdens and ballast, they become heroes and martyrs. Even if any particular individuals don’t feel that way, that’s the stereotype that things get boiled down to. Just as, while particular individiuals may not intend their portrayal of the “whole family is autistic” to take away from autistic people’s political voice, it inevitably will.

And it is important to acknowledge, not only the power dynamics involved here, but the fact that, no, no matter how much time a non-autistic person spends with an autistic person, no matter how involved in our lives they are, no matter how much they give to us, no matter how much they love us, no matter how much they do for us, they are not autistic. They never will be autistic. But autistic people will always be autistic, with or without non-autistic people around. We are the only people who live as autistic people, all day, every day. This is more than semantics.

Everything we have missed?

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This is because I have seen several references lately (in lots of different places) to everything that autistic people must necessarily miss out on. The following post was made last year, and I haven’t managed to re-post it to the archives of this blog yet, so I’ve edited it a bit and posted it here:

This is difficult to write about, there are few reference points in language, and I feel pretty clumsy trying to get words around it. Please keep that in mind as you read this.

I’ve just read over on Kevin Leitch’s blog (courtesy of a commenter, not Kev) that essentially autistic people who decide we like ourselves as we are, just don’t know what we’re missing. That if we realized what experiences we were unable to have, we would jump at the chance to be non-autistic.

There have been a number of ways of critiquing this kind of thing from within disability theory, and I don’t feel up to elaborating on those right now. I agree with them for the most part, but it’s been written a lot already and it isn’t what I’m about to write about.

I wonder if people without my particular experiences (which many but not all autistic people share [link takes you to a poster by an autistic guy who had trouble conceiving of anything outside of words, which is kind of my opposite], and many but not all non-autistic people don’t share) understand what they’re missing. I am not saying they should be like me. They shouldn’t, the world needs all kinds of people and my kind is only one of those kinds. But, despite the fact that xe was writing about a physical intersex condition and not autism, a quote from Jim Sinclair is appropriate here: “It is when someone who has not even bothered to look at my world dismisses it as a barren rock. It is being called inferior to ‘someone who is human.’ It is the denigration of my experiences, my feelings, and my self. It is when my unique faculties are thrown back at me as hopeless inadequacies.”

The autism-related words used to describe me are descriptions of absence and barrenness. Absence of perceptual filtering. Absence between thought and action. Absence of certain kinds of thinking. Absence of a lot of things like that.

The trouble is, the words were created by non-autistic people for describing non-autistic experience.

How do I put into words the experience of all the stuff that fills the supposedly barren gaps between the things other people are used to and comfortable with? I don’t know. I don’t know if there are words for that. I once wrote that I was living in a valley, with green grass, rivers, and trees that don’t even grow on the mountains. But that the people living up on their mountains dismissed my valley as a wasteland because they couldn’t see it clearly from their vantage point, obscured partly by clouds and partly by distance. Some of them couldn’t even conceive of its existence, thought the valley was some fairy tale.

But that’s an analogy. Analogies only go so far.

All I can say is that between thought and action, there is lush vegetation that the mountain-dwellers can’t perceive. Between perception and conventional understanding, there is a whole different kind of understanding. There are creeks to splash in, trees to climb, patterns to perceive. I don’t know how much sense this will make to a person without these differences.

Or perhaps the dog analogy used by someone else comes back. I have had a dog who was a retriever, and a dog who was a scent hound. They enjoyed different things. The scent hound never liked retrieving sticks. The retriever never liked sniffing out trails. Was the scent hound missing out on the richness of life because she wasn’t a retriever and could not retrieve sticks? Was the retriever missing out on the richness of life because he wasn’t a scent hound and had no interest in sniffing out trails? Of course not, there’s enough richness everywhere in life for everyone to have enough, and we all have different parts of it. (And I’ve been sent to hell and back for being who I am, so that’s not a platitude and not meant to enforce some kind of “separate but equal” or sentimental “welcome to Holland” crap, I hope it will be understood as intended.)

But… yes. The richness of life. I wonder if the person talking about the richness of life, is capable of looking around and seeing shapes and colors instead of objects, and of mapping the patterns of those shapes and colors. I wonder if he understands that kind of beauty, or only the kind of beauty that comes from a certain other kind of perception, more filtered, perhaps in some ways more efficient, but irretrievably blocking out many things before they hit consciousness.

I wonder if he understands the dance of waiting for “launch windows” to line up to make actions possible, and all the things that happen while waiting on the ground for the next “launch window” to start. I wonder if he understands that with any pain coming from the jerking-around fluctuations also comes a rhythm and beauty. I wonder if any of this makes sense to him.

I don’t know what’s in the future. I may lose some of these experiences, but there would be other experiences to take their place. These experiences may become more extreme, with some of the experiences I have now lost. These two things have happened in the past, I see no reason to assume that either or both will not happen in the future. Either or both would be acceptable to me. Either or both would include a whole different dimension of the richness of life.

I know I’ve talked about a lot of negative experiences in my posts recently. The positive experiences I talk about here are part of living as the person I am, too. Being the sort of person that gets called autistic brings things that other people describe as negative or positive, but they stem from the same thing and that thing has beauty that many people can’t see.

It is not just having things taken away, it is not just compensation, these things are part and parcel of being autistic, although they differ from person to person. I’m not talking about some balancing act where a god of impartiality runs around taking things away and giving other things, that’s ridiculous and in fact ableist. But I am saying that those who are viewed by society as having things taken away from us, and our lives viewed as being essentially barren wastelands, are not shut out of the richness of life by being who we are. And the richness we experience is not some cheap romanticized copy of the richness others experience. The richness of life is there for everyone, and whether one experiences it or not is not dependent on being autistic. How one experiences it, on the other hand, may well be dependent on neurology and life experience and everything else.

Exactly who is unresponsive here?

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I just watch the horrible public service announcement by Autism Speaks. (I wonder how that girl likes having her mother announce to the entire world that she’s thought of killing her, if you’re wondering why I called it “horrible”.)

One thing that struck me was that the children in the video were described as unresponsive, over and over again. And yet the children were responding to their parents and to their environments in general, and they were doing so in incredibly clear ways.

However, by the way the parents were acting, it might as well not have been happening. They went right on doing whatever it was they had been doing, as if the children were not communicating anything. The body language of the parents did not change in the slightest in response to their children, it stayed constant, and very very socially smooth.

Then, in order to get their children to “respond” to them (as if the children had not been responding already), they’d do things like try to force eye contact. As if eye contact is “connection” and “response”. There was also some grabbing and moving them around, as if they were objects, but without any responsiveness to the reactions of the children. I even saw children being driven into overload and then parents sitting there looking “sad” that their children did all these “behaviors”.

Where is this fabled unresponsiveness?

I see a lot of unresponsive non-autistic people in that video, I see people being, in fact, unresponsive in ways that would strike me as outright cruelty if I thought they knew better. (I don’t think most of them know better.)

But where is this unresponsiveness supposedly existing in the autistic people in the video?

Is it because their faces are not pointed the “correct” direction? (Do you have to be looking at someone to know they are there?)

Is it because they are not talking? (Do you have to talk to respond to people?)

Is it because they are flapping their hands and stuff? (Do you have to move a certain way to respond to people?)

I don’t understand it at all. I look at those children and I see overwhelming, repetitive responsiveness in the face of being totally ignored and shut out.

I’m remembering a time recently when I was trying to find something out from someone, and no matter how many times I tried to find it out, she gave me the same useless piece of information. (Which amounted to, “Just do what you’re told,” which was not what or why I was asking.) When I started banging my head, she started yelling, “Listen to me! Listen to me!”

And the whole time I was thinking, “I am listening to you, why the hell do you think I’m overloaded, lady? Now stop screaming at me or I won’t be able to quit hearing you long enough to stop this.” But she was utterly convinced that I was not listening, and tried numerous ways of getting in my face to ensure that I was listening, all of which ensured I had no possibility of either communicating or understanding.

Then someone walked through and asked how I was doing. I hissed — like a cat, and one of my more unmistakable sounds — and the person I’d been talking to went into patronizing-cheery mode and said “Oh, she’s doing greeeat.” Like I wasn’t even there, and hadn’t just said something, and hadn’t been banging my head moments before.

The sheer amount of people who look at me and view me as “unresponsive” when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as “response”. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as “responsiveness”. When those responses are not present, even if every other possible signal of response is happening, they view that as “unresponsiveness”. And they call us oblivious?