Monthly Archives: September 2007

This link has probably been everywhere already, but…

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…I’m still working to a deadline and can’t afford to keep writing on new topics.

So:

Fat Hatred Kills, Part One
Fat Hatred Kills, Part Two
Fat Hatred Kills, Part Three

(And no, I’m not going to be publishing comments about the wonderful merits of weight loss, this is neither the time nor the place.)

Several years ago my gallbladder was reaching emergency level (early-onset gallbladder disease runs in my family, every woman on my mom’s side has had it) and a gastroenterologist refused to examine me even in a cursory way, and cited my weight as the only real problem. He got a nasty letter from the surgeon later, or at least as nasty a letter as a surgeon can get away with sending. And I’ve seen the same thing happening in terms of purely disability-related prejudice, both to me and other people. Those of us who’ve survived this are the lucky ones. Read the above links.

R.I.P. Madeleine L’Engle

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I almost didn’t read Madeleine L’Engle.

I was in the backyard with my brother, who was blowing bubbles made from homemade bubble soap. I didn’t really know what to say, so as usual I echoed someone else, in this case a common sentence-starter combined with a phrase I’d heard on TV. Which came out, “How ’bout mousy-blah hair.”

My brother said, “Have you been reading A Wrinkle In Time?”

Instant terror. I had never read A Wrinkle In Time. I knew nothing about it except that I had a copy of it, a yellow paperback, in a precise location in my room. But I felt weirdly invaded by the whole exchange.

(My brother wasn’t cross with me about the mousy-blah hair comment. He got more cross when I repeated word-for-word in front of our parents what he’d said about the bubbles he was blowing looking like someone blew their nose.)

As such, I tried to avoid even looking at my copy of the book. I certainly didn’t read it. I tried not to touch it.

But eventually I did read it, and found among other things Mrs. Who, a character who found language uncomfortable and had to speak in quotations. I would later quote about Mrs. Who in an attempt to explain my approach to language to someone who has become a lifelong friend.

So Madeleine L’Engle allowed me to see for the first time a representation outside myself of the sort of functional echolalia I tried to use to get by, and in a non-clinical context being used by a strong character at that. And yet I almost never read Madeleine L’Engle because of a response to my echolalia.

She and her books came to mean a great deal more than that to me. But Anne of Existence is Wonderful put it better than I can. Go read her memorial post.

“Kid Hero Saves Teacher”

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Kid Hero Saves Teacher is a headline that was just pointed out to me.

Brendon quickly came to Kenser’s rescue.

“I just ran over when she passed out,” said Brendon. He got to her purse and grabbed her inhaler, gave it to his groggy teacher and saved her life. He says he knew what to do from a scene in the movie “Are We There Yet.”

“If I didn’t see that movie, I wouldn’t know what to do,” said Brendon.

“After the event he said ”You know Mrs. Kenser, TV’s not so badhuh?’” said Kenser.

Brendon’s family is very proud of him. His mother and teachers point out something that makes this young hero even more amazing. Brendon has autism, something that usually affects communication and social skills. Kenser and Brendon’s mother hope others will see autistic kids, like Brendon, are full of potential and capable of incredible things like saving a life.

This is the actual definition of doing something heroic. Not “overcoming a disability,” but doing something to save another person’s life, or putting yourself on the line for the sake of others, and other things like that. (See We can be heroes… just having a beer for a more in-depth discussion of the putting of disabled people on undeserved pedestals as heroic. A quote from it, “We don’t need the false praise. We’ve earned the real thing.”)

There’s one thing that’s wrong in the article though. It isn’t that heroic acts on the part of autistic people are amazing. I’d imagine we’re no more or less likely to do so than average, and even a study awhile back showed we cared just as much about other people as anyone else, as long as we could understand the social situation. What’s amazing is that people haven’t noticed yet that our “social and communication deficits,” when they exist, don’t prevent us from caring. When we do things like this and are framed as exceptions for doing so, then nobody has to question the rule. The fact is, we’re not exceptions for caring about other people, and for doing what we know how to do to help them. That’s normal, it’s common to both autistic and non-autistic people (once said person understands the situation, which both autistic and non-autistic people frequently misunderstand in various ways). It’s just exceptional whenever anyone happens to notice this about us, to look past whatever stereotypes they have about us to see that this is one area in which we inhabit the same range of caring as anyone else.

A blogging meme from autisticbfh

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From her post Randomness and a Meme

I think my answers are pretty boring.

1. Is there a regular time of day when you compose your posts?

If there is, I didn’t notice.

2. Do you prefer to write a certain number of posts per week (or per month)?

No, but there’s some period of time where I get annoyed if I don’t post. I don’t know how long that time is.

3. Are you more likely to write a post when you’re happy about the topic, or do you mainly blog when you feel like ranting?

A mix of both.

4. Do you write from notes or an outline, or are your posts mostly spontaneous?

Spontaneous. In fact, if I try to write from notes or an outline, I tend to fail. Quite often I even fail when trying to consciously pick a topic.

5. Do you try to maintain a central theme for your blog and avoid random topics that don’t fit the theme?

Yes, but I couldn’t explain what the theme is if I tried. It’s a topic that’s fairly narrow in itself but at the same time applicable to a wide range of situations.

6. Are there any interesting rituals associated with your blogging?

Not that I’m aware of.

Professional projections.

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One of my better psychiatrists (“better” is relative, of course) wrote this about me at one point:

We worked to help her realize that these were understandable and natural feelings for an adolescent girl to have if she was stuck at home on a Saturday night with her father and had no prospects of having a real life.

Sounds really empathetic, and normalizing, and all that, right? The problem is, it isn’t true. It might be what the average adolescent girl would’ve been feeling like on a Saturday night. I personally didn’t conceive of Saturday nights as any different from other nights in the first place. There was no particular significance to them for me. It was just a crappy night in general from what I can, vaguely, recall. But I definitely was not making any special associations with the Saturday part.

I didn’t say it, either, or a lot of the other things that ended up in that report. What happened was my psychiatrist guessed. He sat there and talked to me about what he thought I must be feeling, and then waited for any sign of assent, or at least lack of dissent. I remember clearly him talking about romance and how it was missing from my life. I remember not understanding the word ‘romance’ at the time, so not having any clue what he was talking about.

It’s considered really important to make sure to acknowledge that disabled people are feeling what anyone else might be feeling in a certain situation. And in many ways it is important. But there’ve been a number of times when it just hasn’t worked. My brain works differently. Not totally alien to typical brains, but different enough that my frame of reference is often different. Saturday night still means nothing to me. There’s still a lot of words I hear and don’t understand. People still attribute all kinds of emotions and motivations that just aren’t there because I’m not built like that.

What’s important for professionals to realize, when they write things like this, though, is how much more impact their words have than our reality does. What they write on paper stays in our permanent record. What they write on paper, in fact, will often be believed by other professionals above whatever we have to say about ourselves:

“I felt this way.”

“No, actually, this paper says you felt that way.”

I think there’s something somewhere else in my records where it is said that I made a major breakthrough for wellness in declaring that I wanted to be a psychiatrist. My psychiatrist was always telling me to be a psychiatrist and eventually I got to repeating it. I didn’t want to particularly (not that there’d have been something wrong if I did, but I didn’t), I was just doing what I nearly always did at the time, repeating what I thought was required of me. I can’t count the number of times I see in my records where a doctor, well-meaning or otherwise, writes that I said something, when as far as I know, the doctor is the one who said it. I have no clue if I repeated it or not, it’s likely enough, but that should be kind of suspicious to a doctor. I go over these things, and go over my memories of my actual thoughts and feelings at the time, and there is often no match at all, even when I remember with perfect clarity.

On happiness and its appropriateness.

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This is a video by my friend shinymetalbrain (she said she was curious what she looked like when exuberant so turned the camera on):

I did a video response of my “happy dance” (which was also recorded while I was in that kind of mood, and which should be useful for my “trying to get at-that-moment displays of emotion for a set of staff-training videos so they can read my body language better”):

I don’t know what her experience has been with professionals (or at least I don’t know the totality of it). But I really did have a psychologist determined to stamp the happy dance thing out of me. He took me to get a fish for his aquarium, and I did the happy dance while squealing “fish” a bunch of times. He chastised me for “inappropriate” displays of happiness. He told me that regular people don’t get that excited over a fish, at least not by the time they were teenagers, and neither should I, nor should I show it because it looked strange.

A different psychologist told me that if I were rich I could get away with these things and be called eccentric, but since I was not rich I would have to learn to act normal. That was… interesting. Especially since the most I ever managed was wearing myself out and still getting called psychotic or autistic or crazy or retarded by random people. If I’m going to get called those things either way I’d rather not wear myself out in the process.

What strikes me as strange is that someone would want to eliminate a happy behavior. I mean, I can understand eliminating some of them. The very common behavior in non-autistic people of joyously slapping me on the leg or back when very happy would be one I’d be very eager to see changed. But running back and forth flapping and squealing is apparently not acceptable unless you just won the lottery or something.

Is it exuberance and happiness themselves that aren’t acceptable? I’m not sure, but I sure wonder. When I filmed this, I was just in a good mood in general, the kind of good mood that makes it nearly impossible to sit still. There wasn’t any event sparking it, it just happens a lot. I don’t see a whole lot of people in that mood most of the time, or if they are they don’t run all over the place. The closest I remember was a girl in college who started dancing around and saying that springtime made her want to frolic and that she didn’t care if she looked like a dork. Maybe it’s looking like a dork people are afraid of. I’d rather be happy and looking like a dork than running around all the time afraid I might look like a dork.

(And what’s wrong with looking like a dork anyway? And why do I suspect that the whole concept of “dorkiness” is intimately tied to neurological unusualness in its various forms?)

Interestingly, I did an abbreviated version of this in front of a geeky non-autistic woman at MIT in response to something she said. She misunderstood me. She thought I was upset about something. Hence another reason for attempting to catalog my body language in realtime (at least for staff — some of the situations are personal enough I probably wouldn’t be comfortable putting them in public, but anything like this running-around-happy thing I might).

I remember confiding in someone on a BBS chat that I sometimes got so happy or excited I had to run around the room and couldn’t sit still. The person said to cultivate that and never forget it and never mind what people say. It was a long time since then before I was doing that very often again — I wasn’t very happy — but I’m noticing in the past few years I’ve done it more and more. And I haven’t forgotten what that person said to me.

I don’t remember what my handle was, or even which BBS it was on, but his handle was Sony. As if that narrows it down. He was the guy whose user description was “A cross between Joe Isuzu and a chipmunk, with busy shirts.” I was the kid who probably bored him silly typing out all my dreams. If he’s reading this, thanks for the advice, and maybe reading this site will give you a clue why I was so, er, annoyingly repetitive sometimes.

I’m still trying to wrap my mind around the idea that it’s inappropriate to be more excited than usual about something ordinary, or to express that excitement in a physical way that doesn’t harm anyone. Someone replied to my video telling me that if there weren’t social rules against this sort of thing, most people would do it. Sounds like one social rule that could use rewriting. Of all the numerous attempts to train me out of doing harmless and innocent things, this was undoubtedly the most illogical.

Yep autistic people DO read social cues. When not dealing with language.

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Social Cues Used By Those With Autism Illuminated

To the surprise of the team, they found no significant increase in the time autistic individuals with language difficulties spent looking at the mouth region compared to those without this additional language problem. In addition, the amount of time both groups with autism spent looking at eyes did not differ from their non-autistic peers.

‘Our work suggests that individuals with autism, like their typically developing peers, can and do attend to important social cues such as the eyes when viewing familiar social scenes. The individuals with autism who had additional language impairments tended to spend less time looking at faces generally, but when they did look at the face, they spent significantly more time looking at eyes than mouths.’

I can’t look up the specific blog entries right now, but I’ve talked a lot in the past about how many social cues I can attend to when I am not trying my darndest to hang onto language comprehension. Looks like some researchers finally found something related to that too, that the tendency to stare at mouths rather than eyes in some autistic people was likely related to their attempts to use lipreading to augment hearing when processing language.

I can read a whole lot of body language — not always the standard parts but a whole lot of it — if I’m not engaged in language comprehension or production, both of which are very taxing on any other perceptions. Been saying this a long time. Been wondering when research would actually support it. Glad they’re finally at least stumbling on bits of this. (Sorry for not blogging eloquently on this, but I think I’ve already covered it in the past and I’m glad someone’s finally looking at this.)

If you can do X, why can’t you do Y?

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This video is my all-purpose answer to that.

Was not planning on making a video tonight, or at least not this video. Just sort of happened. It’s mostly text and spoken words, but there’s parts that are different. Does presume standard hearing and vision (at least standard range of hearing and color perception) but that’s sort of the point, given who it’s geared towards.

A personal reflection on pity for the anti-telethon day.

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Here is a link to the home of the anti-telethon blogswarm today. And I’m late in posting. I’ll leave it up to the other posters to explain the assorted politics of telethon stuff. I do that some years. This year I am not up to the whole explanation in one night, and others are doubtless managing better. But I can discuss the toxic effects of pity.

I got an email recently from someone I haven’t heard from in years, and haven’t seen in over a decade. And talked to them on the phone. And I got all stressed out about it. Not because they pitied me. They showed no sign of doing so that I could detect. But because they potentially could end up doing so, and the potential was strong enough to freak me out in a way other things could not.

When I knew this person before, I experienced my life as a living hell. I mean, few teenagers don’t, regardless of circumstances, but my circumstances weren’t great at the time either. I’ve experienced my life since then as one of growing up, on somewhat of a rockier road than many, and less rocky than some. And I have experienced the changes that have taken place in that time as mostly positive. I have gotten out of situations that would be considered hellish by even adult definitions of the term uncluttered by teenage angst. I am now happy (which I could never have said before the past few years), doing a lot of things I want to do, and using my abilities as well as I can for a whole wide variety of things I care deeply about. I know a lot of non-disabled people who cannot say the same.

But I am well aware of a superficial and ableist take on my life that is very different. In that take on my life, I had made my way into the classification of a gifted child, and experienced a mysterious and horrible regression at a certain age (which everyone then rushed to find scapegoats for). I gradually lost (or in some cases lost merely the appearance of) certain specific motor, comprehension, and speech functions, and for awhile also looked like I was going crazy (which was my own fairly complex response to the chaos that seemed to be going on at the time). And now I use crutches or a wheelchair to get around most places, a keyboard to talk with, staff to help me with daily living stuff (which I was never good at to begin with but it doesn’t show as much in a child as when the child gets older and still hasn’t learned it), etc. I have a number of fairly complex health problems. I don’t get out much. Have experienced a continuing drop in tested IQ. Etc.

These changes have just happened, most of them gradually, over time. By this point very little about them alarms me, or I would spend all my time being alarmed, which would not be all that useful. I have a life and I live that life in the body I’ve got with the mind I’ve got, and I spend more energy than most non-disabled people I know on trying to do so as efficiently and practically as I can.

But how to convey that to someone for whom the change has not been gradually observable over time, and thus looks pretty drastic? How to make sure that pity is not the response I get? How to avoid the slap in the face of hearing the version of my life based more on imaginary stereotypes than anything real, put forth as reality? How to convey what the actual reality is? I don’t know. Fortunately it has not come up, the person in question has not responded in a way that would make it have to. But it was a real possibility, and a possibility that I feared. Pity is seen as the default response to a situation like mine. Many people don’t see that I have a life, and that this life is not divorced from my body, nor married to their preconceptions of what life in a body like mine must be like, but just going on like everyone else’s life in many ways, just a very different shape in some respects. I am glad the person who contacted me out of nowhere has not treated me like this, but it’s the fear of this reaction that has kept me out of contact with a lot of people from my childhood.

Dave Hingsburger talked about public displays of people for money making him (literally) puke. I am not likely to actually puke, but what nauseates me is the way people’s lives are written off after we cross some mysterious boundary line between “abled” and “disabled”. Mind you, I have been autistic since I was born (probably since beforehand), and a number of other things besides, but I was passed (I will not say “I passed”, that gives me too much agency and say in the matter) for awhile in certain ways and in certain contexts. When that became no longer possible for a number of reasons (again, some in me, some in my environment’s demands of me), I crossed some kind of line past which the response of most people is pity.

I have heard and read many accounts of Syd Barrett, the former member of Pink Floyd who is said to have brain damage from LSD (similar to a false rumor that was started about me at one point, so I won’t comment on the truth or falsity in his case, because I know that in my case substance abuse was a sign that I was in the middle of some kind of stress-based collapse, not a cause of the collapse, and I don’t want to speculate too far one way or the other about a stranger). Whatever the reason, he crossed some line into what they considered too much craziness and was kicked out of the band.

Everything I hear about him past that point is laced in pity. From what I heard he had a life from then on, but the people who were formerly in his life could barely stand to see him without breaking out in great gushes of pity. Some of them reportedly attempted to avoid him because they felt so sorry for him — that sounds like ‘pity’ was part of something closer to revulsion and hate. And from what I heard, he couldn’t stand the songs they were writing about him when he did finally meet him again. I am not inside his head, but perhaps he hated the pity that ran through them, the sense that who he was as a real person had ceased to exist, that they thought his life was already in a sense gone, that he was half-dead to them. That’s why I hate certain kinds of pity, at any rate. It’s a form of metaphorically killing the person I am now by claiming that the best of me is already gone. I identify a lot with what I’ve heard of him, not because of the larger-than-life mythology that’s cropped up around him, but because he had to navigate around that mythology, and the resultant pity and lurid fascination, for the rest of his life, more even than most disabled people do (because he was famous), while living what was probably to him a perfectly good life or at least a perfectly ordinary everyday one, that did not end the moment he left Pink Floyd.

I mean, think about it, if you were living what you thought was a very interesting life, would you really want this song written about you (lyrics here since there’s no captions)?

I’ve heard it said that he didn’t want to be reminded of what he lost, and I’ve very occasionally heard similar things said about me. I don’t know about him, he’s a total stranger to me. But personally, I am not bothered by the possibility of confronting what I have supposedly lost. My childhood, even, perhaps especially, at my so-called “highest functioning” (by someone else’s standards), was very unpleasant and it’s that unpleasantness that lingers in my memory as something I’d rather not experience again. I’ve gotten away from that, and I certainly don’t experience it as a tragic loss, but more of a pit I managed to climb out of. What bothers me is that some people see my childhood as the highlight of my life, because some of it in some circumstances was the time I most exceeded what was expected of me in a very superficial sense. It bothers me for what has been a difficult but rewarding life to be summed up as a tragedy, a life that ended halfway through. There’s little more eerie and dehumanizing as being treated as the walking dead, or being held up to a ghost that you were never going to be and found wanting, all for superficial reasons. And I’ve experienced it not only from people who knew me prior to whatever sociological shift I underwent, but also from professionals in general.

Jerry Lewis has said similar things about people who use wheelchairs, and has even said once we’re in a chair we’re only half of a person. At least he is blatant about his bigotry. But he obviously has never had to use one when he really needed one. I can remember how immobile I got before I finally decided once and for all to begin using a wheelchair part-time. And I remember the freedom and mobility it’s allowed for in my life. It does not diminish my life, it enhances it. But even close family members could not see that at first, because wheelchairs are so emblematic of a diminished and pitiful existence. (For an essay that changed my view of the things drastically, try I Want To Live, Give Me The Chair.)

So whether one acquires something, or something progresses, or circumstances change to make something stand out more, the reaction a lot of people have is the poisonous reaction of pity. Telethons only add to that. They say our lives are over, sometimes before they have even started. And we defy them by living our lives as the complex and growing people that we are, regardless of how various aspects of us are medicalized, and regardless of how those aspects of us appear or change over time. We are not the walking dead, we are not half-persons, we are quite alive, and the everydayness of our reality outshines all the tragic melodrama others want to drape over us, and the ‘normal’ ghosts they would compare us to. And people would notice that if they only they stopped looking at the glossy telethon versions of our lives.