Monthly Archives: August 2006

Aug9

CCDI on Katie McCarron

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Katie McCarron by Coalition of Citizens with Disabilities in Illinois.

Sobsey suggests that the “widespread social perception that ‘altruistic homicides’ like the killing of Tracy Latimer, are the acts of heroic and loving parents who deserve praise rather than punishment can be expected to encourage more parents to kill their children.”

Sobsey’s research also sheds light on what it is exactly that causes a parent to kill a child – it has very little to do with “mercy killing.” In fact, FBI profilers and criminologists agree that “the deeper motivation for mercy killing to be a pathological need for ‘power and control.'”

Aug7

Want more contributors to Getting the Truth Out

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I never intended Getting the Truth Out to just be about me. It ended up that way in part because midway through promoting it and trying to do various stuff, I ended up without consistent Internet access for a couple months. (First living on the streets for a few days then relocated to a studio apartment with no phone line and a constantly-there roommate, parrot, etc — long story, but not conducive to getting anything done online.)

I’d like other contributors as well.

The format should have a few loose elements in common with the format I used: There should be an introductory section that shows you in the most pathological light you can manage (but still realistic to your life), and then it should switch somewhere along the line to your actual political views about autism.

And your actual political views don’t have to be absolutely identical to mine, but pro-cure stuff isn’t going to be posted on that site, nor is stuff that’s hateful towards some kinds of autistic people. (If you want to talk about how wonderful HFA/AS people are and how awful LFA people are, or vice versa, find somewhere else to do it.)

If you have trouble making photographs into black and white or resizing them, I can do that for you.

Also the pathologized part should be realistic. As in, it should be stuff that really could be said about you if someone were to sit around and pick you apart as if you had a disease. I could not say, for instance, that I smear feces, because I don’t and never have (even if I’ve done other “bizarre” stuff with bodily functions, which I have), but if you do (or did) you could mention that if you wanted.

And for the pathologized part, it doesn’t have to be a portrayal of the exact same stereotype I’m portraying. One person I know is thinking of doing one that focuses a good deal on her sad lack of a social life and the fact that she’ll never marry and spends most of her time interacting with a computer. The point is to definitely portray yourself, but portray yourself in a way that’s warped by that pathological, medicalized, destructive, tragic view of autism we all know too well. (An example of a non-disabled person doing that to himself for the purposes of making a point, is here.)  And then after you’ve done that for a bit, to discuss your real viewpoints about being autistic and what that means to you.
It also doesn’t need to be as long as mine.

The format I’m planning on, is to have a page that has one picture of each person who is on the site, along with a name. (It can be a real name or a pseudonym, just let me know which.) Then a person can click on any picture they want in order to get “that person’s story”. Told at first in a pathologized and third-person way (“She,” “This person,” etc, not “I”) and then in the first person once you get past that switching point. (Again, same general structure as what I did, but different photos and different things being said.) The reason I’m asking for realism is because one of the first things people can say is “But none of that is true,” and I don’t want to give them a chance.
So if anyone’s interested, my email address is the same as:

http://ballastexistenz.autistics.org/

Take out the http:// at the beginning and the / at the end. Then turn the first . into an @ and you get my email address.

Oh, and for those who don’t know yet, Getting the Truth Out was a reaction to the site http://www.gettingthewordout.org. More of my reasoning is explained in the article Autistics Speak. (The anonymity had to be partially dropped. But the reasons for the initial anonymity are explained there, as well as much of the reasoning behind the site.) So if anyone wants to contribute, please email, it’s not supposed to just be a site with one person on it.

Aug6

Joel’s site move, and his “Autistic Professionals” post.

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Joel’s website and blog have both moved.

His website is now http://www.thiswayoflife.org/

His blog is not http://www.thiswayoflife.org/blog/

I haven’t updated my links yet, but people should. Particularly a lot of people have linked to this page:

http://www.thiswayoflife.org/murder.html

The old Geocities site will not be updated so it’s important to update that link. (Again, not that I’ve got around to it yet.)

His current blog post, You Can be Autistic or a Professional, but Not Both also interests me. It’s about how when autistic people are professionals, non-autistic people in autism circles are more likely to view auties as just “talking from their own personal experience” and discounting any particular expertise they actually had to learn.

That’s a lot like what happens to Michelle Dawson. Never mind that she’s an autism researcher with an interest in ethics, people still think she’s speaking only from personal experience as an autistic person, and still try to paint the issue in terms of what kind of autistic person she is (or is not).

And while I’m not a professional, I do have a particular interest in certain areas of ethics, politics, and history. I’ve known a few autistic people very well, and a lot of autistic people at least a little. I’ve read any book that I can get my hands on by an autistic person. I’ve known autistic people from all over the so-called spectrum in any number of settings. I’ve participated in advocacy efforts within the disability rights movement, the psychiatric survivor/ex-patient movement, and the autistic community. While I’m not officially recognized for any of this, it accumulates into a wide-ranging bunch of knowledge that sits in the back of my head and informs everything I do.

Yet when I talk about autism or disability rights in general, people quickly reduce everything I’m saying to a product of my own experience and only my own experience. They brush aside and ignore all that other experience and the wide variety of worldviews I’ve been exposed to, and assume that every ethical discussion I get into is rooted in my experience and mine alone, or even my real or imagined neurotype in the so-called spectrum and mine alone, rather than my opinions having any merit for other reasons.

So it’s not just professionals we don’t get to be. It’s anything that acknowledges our ability to gain significant knowledge from outside our own experiences. And people say we are the ones who can’t take others’ perspectives.

Aug5

Myth-Debunking, and an additional myth

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Standard Disclaimers and Personal Myth-Debunking Reference

That’s a post by Zilari that everyone should read. Laurentius Rex also wrote a Larry Arnold Myth and Reality post recently. I’ve wanted to write a post like that for awhile, but the reality is often far longer and harder to write about than the myth, so I’ve steered clear of it.

One myth that I haven’t seen mentioned on either of those posts, though, is one that’s still hard for me to wrap words around. Something like: The myth of the autistic person as having priest-like powers to absolve parents of real or perceived sin.

Years ago, I was talking to a mother of an autistic kid. She seemed to have some desire to get me to pronounce things she was doing okay, as if me saying they were okay would make them okay. She talked about how she stared at her son sometimes and wondered what things would be like if he’d been normal. And she talked about wondering and wondering and wondering if it was the vaccines. And she seemed to not be satisfied in telling me this until I said something along the lines of “Yeah, those things are understandable.”

Later, I’ve had people throw things they’ve done in my face, weapon-like. Another parent who had institutionalized their child told me all about what a wonderful and caring parent they were, and what a wonderful and caring institution their child was in. They really seemed to want some kind of acknowledgement that institutions were really okay. When I didn’t give it to them (and told them I was not going to continue the conversation), they wrote several times a day with increasing amounts of detail about what a loving person they were and how I had grievously attacked them even if I looked innocent. The accusatory posts (ones in which many false and negative things were said about me) came so many times a day that I had to stop reading the forum until the person either left or got banned (I can’t remember which).

That’s an extreme example. Most people don’t become quite so overtly hostile. But many people do seem to look to autistic people to reassure them that what they are doing or have done is okay. And often go to greath lengths to justify to any autistic person they meet that whatever program they do or don’t have their child on is really okay and really useful in this child’s case (whether or not it actually is).

The reality of the myth is that neither I nor any other autistic person I know has the power to make things right that are not right, or to convince a person that they are doing the right thing if their conscience keeps bugging them. If we do provide such reassurance, it won’t make it real, it won’t make certain things right. Those things are between a person and whatever it is in their life that they attribute a sense of ethical behavior to.

An autistic person’s reassurance won’t make anything better. What it will do, though, is possibly make a person feel better for a time about whatever they are doing, whether what they’re doing is right or wrong or some combination of the two. It will also lend some kind of credence to what is going on — “See, an autistic person approves of it, therefore it must be okay.” And it can even be used against other autistic people: “See, this autistic person approves. He’s a nice autistic person who is truly interested in the welfare of other autistic people. The rest of you who don’t approve? You’re just cold, heartless people who don’t understand the real situation.” One thing it doesn’t do is automatically make something okay. Any so-called “treatment” for autism can acquire at least one autistic person backing it. It doesn’t make them, or the mindset behind them, correct.

So, to anyone who comes to me (possibly to any other autistic person, but for all I know some don’t care) and tries to justify everything they’ve ever done to their child, in the hope that I’ll tell them, “Yes, that’s really a good thing” (and I’ve known people who are explicitly doing that, so if you’re truly not doing that, I’m not talking about you, but if you are doing that and want to think you’re not, go detangle your head or something) you’d be better off just trying to figure out right and wrong. I’m tired of being put into situations where the only acceptable or compassionate answer is considered to be “You’re right, you’ve done nothing wrong, you need to change nothing.”

When people interested in the rights of rabbits tell me that keeping rabbits in hutches with no stimulation grievously harms the rabbit, I do not tell them, “I put my rabbit in a hutch before. And that was right for my rabbit. Please tell me that was okay. I’m a good person. Really. I petted my rabbit. I fed my rabbit and gave him water every day. I’m not a monster. I didn’t do anything wrong. I loved my rabbit. And I was only a kid. Don’t hold it against me.”

Most, in fact, understand the concept of having done something wrong and knowing it was wrong and changing what you’re doing. But I doubt they’d have the patience for someone trying to prove that what’s really a form of animal cruelty is right, even if it’s genuinely true that for a long time I didn’t know any better. If I were sitting there trying to justify it to myself by justifying it to the House Rabbit Society, I’m sure the HRS would eventually just want me to go away, and they certainly would not sit there and tell me that my attitude was understandable and that I was clearly a loving person so what I did didn’t harm that rabbit after all. If I showed remorse, most of them would accept me and even work alongside me, but I doubt they’d want to accept what I’d done, and I wouldn’t want them to, fear of being wrong gets in the way of doing what’s right (and is also, in the form I’m talking about, just plain self-centered, always directing things back to “Am I a good person?” and making everyone around the person get into the role of reassuring them and taking care of their feelings).

But in the autism community, one role given to autistic people is to absolve parents of any guilt they feel about their attitudes and practices. And that’s not something we have the power to do. Even if we pretended to have that power, it would be hollow. We can’t do that for you. That’s the sort of thing parents have to work out (and really work out, not just come up with a long string of rationalizations glued together by prejudices and misconceptions or something) for themselves. Nobody — not autistic people, not other parents — can do that for them, any more than a person telling me that my prior attitude to rabbits was okay, could do that for me.

Aug1

Editing and Projection

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default blank facial expression

This is largely in response to comments on a recent post.

These pictures are, just so nobody has any doubt about it, pictures of an overloaded autistic kid. (Sometimes right in between meltdowns.) Any facial expressions or gestures going on here are not expressions of emotion, they are expressions of overload, shutdown, or some combination of the two. (Although this is really my default facial expression, I am pretty monotonous that way.)

What I find interesting about this is the context in which these pictures were used.

Just as I was beginning to enter a time period that I call adolescence and many professionals in my life called extreme regression, I was in a film for a grief counseling service. The acting was, in general, really bad. Really bad.

more default blank facial expression

It’s hard to be a good actor, at least playing an NT, if you have pretty much one main facial expression that you can’t easily change on cue, limited gestures, and look visibly separate from a group of kids you’re supposed to look like a part of, even when you’re told exactly where to put your body and what direction to point things in.

That last part now gives me a much better idea of why people were so convinced for awhile that I wasn’t paying any attention to anything social, my movements simply do not coordinate with or intermesh with the movements of the people around me, while all their movements are coordinated with each other.

And if your idea of “acting with feeling” is to combine echolalia with making your voice go up and down in a regular rhythm, and occasionally flapping your hands around while they’re at your sides. But even the non-autistic actors weren’t much good.

chewing on hand

Anyway, the assorted demands of a film set had me pretty much constantly on the edge of overload, and sometimes over that edge.

They did edit out the part where I started taking things out of my desk and sticking them in my mouth.

But there were plenty of shots of me staring at nothing, sticking fingers in my mouth, biting my hand, and even at one point flapping. (All of the expressions and gestures shown here are part of my standard set of positions, which apparently hasn’t changed much over time, but the hand-biting and stuff is generally something I do when I’m extremely overloaded.)

So, anyway, I’ve established that these are pictures of overload. They’re not pictures of acting. They’re not reactions to the subject matter in the film. They’re reactions to an environment that I still remember as intensely loud, bright, and cluttered.

chewing on one hand, flapping the other

So, when I finally pulled my tape of this out again as an adult, something immediately struck me.

They thought that all that chewing on my hands and staring at nothing and stuff was acting, or at least reacting to the idea that we were talking about people’s families getting killed. (Many of the kids were clients of the grief counseling center. They, by the way, give me an idea of what really deserves mourning in the world.)

They were interspersing it with the things people said. These things were supposed to convey sadness and reaction to a discussion about death.

chewing on finger with eyes almost closed

Acting, as far as I was concerned, was managing to be positioned in roughly the right spot and repeating roughly the right words, not much more than that. I’m now stunned that, despite the fact that they weren’t particularly good actors, the other kids were showing all these nuances of reaction and stuff all over their faces and in the noises they were making, constantly. They seemed to constantly have their bodies positioned in relation to each other.

So it makes sense that the filmmakers would have imagined that, rather than being overloaded, I was actually acting. (They also figured that my repeated meltdowns were a reaction to the seriousness of the subject matter, and kept trying to express their sympathy and explaining to me that lots of people feel that way. Which of course I perceived as just more sensory invasion.)

standard blank expression

All this interests me in light of the recent discussion that was going on in the comments to one of my posts. People were talking about the sort of mistaken impressions people get from their facial expressions.

It got me thinking about how in this case, it wasn’t just a mistaken impression, but it got used to convey a whole lot of things that weren’t going on in my head. I suppose that’s what most acting really is, but I think most acting is a lot more intentional.

People were talking in the comments, about their eyes or faces being interpreted as blank, which can be interpreted ‘favorably’ as ‘thoughtful’.

I’ve frequently run across that interpretation, and I’m pretty sure that’s what they were assuming here. Along with ‘sad’ and ‘serious’, two other things my face gets me considered often.

This is the only thing where I have evidence of misperception on film. I can rewind the thing and remember what was really going through my head (sensory chaos, mostly) while they were pointing the cameras at me, and then I can look at their obvious interpretations of this. It’s very strange.

This makes the power of editing very apparent, too. And the power of projection (and I don’t mean film projectors).