Monthly Archives: April 2007

Disability Blog Carnival #13: What Box?


I have finally gotten the carnival together. To start with, here are a couple of images of the most important boxes to me at the moment:

a box of Kleenex
The ever-important Kleenex box

a nebulizer
The even-more-important nebulizer

In other words, I’ve been sick which has been making my asthma obnoxious which is why I’m another day late here.

For other people who are late (I remember Anne C in particular was working on another post): Please comment on here with submissions from your blog or other people’s. I will try to include them, even after the Carnival is over. I won’t print your comments with submissions, I’ll just add the submission, to preserve submitters’ anonymity. You cannot use the form anymore, not since Monday, because it’s passed on to the next person.

On to the Carnival.

Late or forgotten submissions

Watch this area for late submissions or things I forgot to include earlier.

Of Boxes and Bias is a post at Existence is Wonderful with a great analogy about the various boxes we’re put into and the various responses we get to stepping out of them, as well as narrow definitions of personhood and humanity.

The Box, from the blog the strangest alchemy. This one deals with the fact that people are taught about child abuse, trauma, and sexual abuse, but only in a limited and formulaic way that does not allow for, for instance, trauma that happens during so-called “therapy”.

If you liked that one, you might also like the (multi-page, so don’t just read the first) monologue Disability Shame Speaks from Ragged Edge, which discusses some of the same issues.

stacked plastic boxes Literal Boxes

Roof Spider Car-Top Wheelchair Carrier is a post from Wheelchair Diffusion about a literal box that is useful to disabled people.

In Fingerspelling: Tying T.rex to ASL, Carl of Kalalau’s Corner describes using a box — a window, in particular — to teach people fingerspelling.

Current Events

There were several submissions about the tragedy at Virginia Tech.

Slumgullion #36: Deranged Killer Edition at The Gimp Parade pulls together many posts dealing with the shootings at Virginia Tech, from a disability perspective, including many many important posts dealing with the ableism of simply labeling Cho Seung-hui “paranoid” or “psychotic” and smearing entire groups of people while not looking at what really made him do something this awful.

From Diary of a Goldfish, the post Here, There Be Monsters compares Cho Seung-hui’s shooting rampage to other daily rampages that don’t make the news, and discusses the boxes, disability-related and not, that he gets put into.

In Don’t Draw the Wrong Lessons from Virginia Tech’s Misfortune, from Yet Another Never Updated Blog, the author discusses the difference between crime and having a psych label.

Other Stuff

Diary of a Goldfish reminds us about Blogging Against Disablism Day on May 1st.

In Imagine That, Dave Hingsburger of Chewing the Fat explores the category of disability with several women who regard themselves as old rather than disabled. Then in Mobile he confronts his own prejudices that have led him several times to put people with developmental disabilities in the box of “foreigner” and forget that we’re as much a part of our cultures as anyone else.

Here at Ballastexistenz, I’ve written a post called The Awful Prison of Autism about the boxes that I’ve been expected to conform to both as an autistic person and as a public autistic person, and the different ways autistic people can react to these boxes. My old post Let’s Play Assumption Ping-Pong deals with some other specific boxes.

Review of “Till Domestic Violence Does Us Part” in ASC On the Couch is described by the submitter as: “An accessible video about domestic violence made by and for ASL users probably already seems “out of the box” to some, but the ASC reviewer has respectful suggestions for making it even more widely relevant.”

an air purifier next to a bed with a cat on itPregnancy is Hell is a post by Retired Waif about the boxes she is put into by others as a woman with multiple sclerosis who’s chosen to get pregnant. In Pretty on the Outside, she discusses the boxes she’s put into when she doesn’t use assistive devices versus the boxes people are put into when they do use them.

In Plurality as a Choice, etc Lilac and Yushyu of the Amorpha system describe the controversy in the multiple community about whether multiplicity can or should be voluntarily chosen, and the problem with forcing rigid definitions of a particular way of being. They write, Maybe I’m just looking in the wrong places, but I’ve seen a lot more harm done by people being bashed on and driven out of communities for “you can’t do it like that!” than by “fakers and wannabes ruining our reputation.”

Winter Blues by Larry of in regione caecorum rex est luscus discusses his despair at how little anyone in the autism community wants to hear their boxes are all wrong.

Danechi of And Stimming with Rainbows of Every Design writes a post called Autism Prerequisites that deals with the prerequisite experiences autistic people are expected to have had, even if we haven’t.

The post ~deafness~ at Urbania to Stoneheads deals with, among other things, oralism.

Christie Gilson: Agent for Change from David of Growing Up With a Disability describes how the only person who tried to put a Fulbright scholar into a limiting box for being blind was a special education teacher (go figure). He also has an older post called Thinking Outside the Box about not having to do things the way they’re always done. And Which Box?, about a choir director who saw “cerebral palsy” and “tenor” as mutually exclusive categories and went from putting David in one to putting him in the other.

In Disability and Economic Relevance Anne C. of Existence is Wonderful describes how discussions of the ethics of disability too often get derailed by putting disabled people into the box of potential economic burdens.

In On Sunday, Angelika writes about various forms of help.

Damon of Do Your Worst eulogizes his longtime friend Sara Morgan in Sara Morgan 1972-2007.

In Diversity and Relativism, Donna of Donna Williams’ Blog poetically describes the sort of boxes she does and doesn’t want in her life: “If I had a box for my soul/I’d hope for one made of dust/so that the light would shine on the particles/and make stars.”

Gordon of Gordon’s D-Zone writes about science fiction stereotypes of disabled people in My X-File X-Life.

Ettina of Abnormal Diversity writes a post called Any Explanation Except Discrimination, about how two different medical approaches to disability are just flipsides of the same coin rather than a true change in the system.

a box with a lid that says CAT: Celebrate Autism Today on it with a stylized picture of a catBev of Asperger Square 8, who regularly photographs boxes in the form of squares, has three posts: This Box I Call My Life, Life-in-the-box: Part Two, and (Not free) Prize in Every Box, all of which deal with various aspects of the autism and Asperger labels.

Planet of the Blind‘s The Wrong Box describes Steve’s ability to shake up people’s boxes just by existing around them.

In The Glass Box, Andrea of Andrea’s Buzzing About describes being treated as invisible because of lack of acknowledgement of her unusual social signals.

Wheelchair Dancer writes a post called Boxing Pretty about the various categories in her life as a dancer and a wheelchair user.

Joel of NTs are Weird has two posts. Autism Myth of the Week: Empathy takes on the myth that autistic people are cold and uncaring about other people. Iran and Putting Words in Our Mouth is about the many forms of influence in communication all over the place, versus the fact that it’s always users of facilitated communication who are forced to prove over and over that they exist and are not unduly “influenced” by their facilitators.

The Autistic Bitch From Hell, of Whose Planet Is It Anyway?, writes a post called Human Strengths, Human Weaknesses about how autistic people’s skills get called “autistic skills” while non-autistic people get to just have “skills”.

A Cry For Validation or Whining? in Barbara’s Tchatzkahs is about the misunderstanding and isolation that often come with chronic illness in an ableist society. She writes of her ex-friends, Some of them outright admitted they couldn’t deal with the fact that I wasn’t getting better. Like one of my late parents said to me “you’re useless now.”

a cat litter box


And still no blog carnival because…


…unforeseen events happened.

Namely, my neighbor’s parrot badly mucked up the registry on her palmtop computer.

Which led to her attempting to move his stuff around so that he would not be sitting in a spot where it would not be so easy for him to muck with her computer equipment.

Which led to her calling me — I’d been asleep most of the day (because I’m still really sick) — to see if I could help her move the parrot stuff around (because she’s been sicker than I have, and I’m taller and usually have more mobility than she does).

Which led to both of us sitting there trying (both with bad respiratory bugs on top of asthma) to move stuff, both large and small, around, and to clean it while we were at it, stirring up a whole lot of dust in the process because apparently her staff don’t dust as often as they say they do.

Which led to me having the sort of asthma attack that conjures up really shallow breathing, blotchy blobs in front of my eyes, and disturbing noises in my ears (the sort of stuff that I’d normally only get from standing up too fast, only I was lying down).

Which led to me spending the rest of the evening on her couch, using a nebulizer off and on (and being told by an asthma doctor to use it twice in a row if necessary).

Which means… maybe tomorrow. And if not, I hope tomorrow’s excuse is more like yesterday’s than today’s. Anyone who said they’d be late getting submissions in should be happy at least. ;-)

Sorry I’m late with the Blog Carnival. My home was invaded by interesting geeks.


I should have it up later today, and I mean that about today, because there’s nothing really planned for today.

Yesterday I got a visit from three people from MIT, and by the time they were gone I was totally exhausted. (They were fun though, very autie-friendly and geeky. But there were still three of them.) I thought of trying to get the blog carnival done last night, and did some of it, but haven’t finished, so I’ll finish it sometime today barring anything unforeseen.

I wanted to mention something interesting they brought along with them. It was a glove that uses a couple of simple electrodes that attach to an LED, that measures your body’s (physiological, not sexual) arousal by how much your hands are sweating. The brighter the light, the more the arousal, which usually correlates to some kind of emotion, whether positive or negative. (Either laughing or being scared or stressed out, for instance, make it glow brighter.)

Anyway, the gloves were all too big for me, but they had one that was just electrodes that attached to a thing that transmits to a computer, which then shows it on a graph. Because there were so many people in the room, my arousal level was really high, it turned out (I wouldn’t be surprised, being around lots of strangers stresses me out). But if I sat and rocked and didn’t look at the people, it slowly went down. The moment one of them turned her head to look at me, though, it suddenly jumped up again. And this was before the point of eye contact, even, and certainly before I could feel more than a small difference in my stress levels.

She said that Ami Klin had tried to claim at a lecture that eye contact doesn’t actually cause any stress for autistic people, and that some autistic guy in the audience had stood up and told him he was full of crap (well maybe not using those words, but something along those lines). I showed her my Eyeballs Eyeballs Eyeballs post and also discussed with her the research in this regard that says yes, in fact, autistic people are generally stressed out by eye contact.

I wish I’d had that on during the interview with Sanjay Gupta so I could show him that I was even reacting in a measurable physiological way to his attempts at making eye contact (he asked me, in a part that didn’t get aired, why I didn’t just look at him, and he was, I think in an attempt at friendliness, leaning into me the whole time in a way that was making me very stressy indeed, too stressed out to fully explain to him the effect he was having on me). I also wish I had one of those devices to play with for longer. It sounds as if they could be really useful in learning what stresses me out before it reaches the point that I notice it. I also wonder if showing readings like that to the sort of professionals who are heavily invested in forcing eye contact and other invasively direct forms of interaction on autistic children would make them think twice about it.

Things not directed at others, but seen to be.


[I’m sorry about not having the blog carnival post out yet. I’ve been working on it. Today is going to be a busy day. I will try to get it done by the end of the day.]

Someone wrote something privately where they referenced my last post. I can’t reference what they wrote directly, because it was private, but it gave me an idea I wanted to post about in addition to my last post. (And I want to give them credit for reminding me even if it’s anonymous.)

And by the way, I know that in this post I appear to be fitting a number of stereotypes about autistic people. Please be aware that not all autistic people fit these stereotypes, and that even I might not fit them in the exact way the stereotypes run, and that someone not fitting these stereotypes does not mean they’re “less autistic” or something.

It’s interesting to me that when doing something in the presence of other people, there is an assumption that the thing is done in order to affect them in some way, or as deliberate communication with them in particular, when it might not be something like that at all.

One thing that leaps immediately to mind is the fact that I used to dress in an extremely unusual way when I could get away with it. I particularly enjoyed soft fuzzy things and shiny things. I also at various points in my life liked to wear jewelry that I could play with all day, such as bells and things that caught the light in particular ways, and I liked hanging things out of my hair because I liked the way it looked if I saw a mirror.

I guess the first time things puzzled me in that regard was when my mother used to ask me, when I came home from school, “Did anyone notice your ______ today?” where ______ was some aspect of my appearance that had been changed recently. I was extremely puzzled by this, because I did not do these things in order to be noticed, and I also didn’t notice whether anyone noticed something about me or not. That wasn’t why I did things like this. (Edited to add: My mom emailed me to tell me that she didn’t mean that I was doing it for attention, but rather something else.)

Other people seemed to think I did these things to be noticed, too, and I heard a lot of scathing remarks along the lines of “You just look like that for attention.” Actually, I found compliments somewhat aversive, and also found comments along the lines of “You just do that for attention” aversive, so if people’s reactions had been my main motivating factor I would have dressed much more plainly and typically so as not to stand out and draw comments.

I have also always done a whole lot of things with the sole goal (if conscious or not) of reducing overload, comprehending things more, and being more comfortable, as well as just because I found them fun.

Once, during a loud performance by a school band, I clapped my hands over my ears in a rhythmic way. Pretty soon, unbeknownst to me, my entire class had joined in, presumably to see if it was something fun or not. I got in trouble for apparently instigating everyone else to do this, when I hadn’t even been thinking about anyone else. (I also was unaware it would be construed as disrespectful to the band.)

I’ve done the same sort of thing with rhythmic blinking, which I used to do a lot of in order to make the blobs of color generated by my retinas dance around in the air. I often move things in my peripheral vision to ward off migraine-induced visual overload. I used to handle having too wide a field of vision pretty simply — by taking all my hair and putting it around my face like Cousin It. And I move my body in a wide variety of ways, some more voluntary than others, in reaction to what’s around me but not with any intent of influencing the people around me or creating any particular image of me in their minds.

(One possible exception being that I used to have a compulsion to make people utter a particular word — the word changed from one point to the next — but part of the compulsion was to not let them know that this was what I was doing. And even in that, the goal wasn’t really the attention itself, but a weird compulsive desire to hear a particular word. I have only met one other person with this particular compulsion, so I doubt it’s a really common one.)

I can also remember in school, having to (I’m not sure why) flap my sandals so that they would hit the pavement hard with a loud slapping sound. I couldn’t seem to walk any other way even if I tried. (This was right around the same age I was developing vocal tics, so maybe that’s my answer. Or maybe I just liked the sound.) This confused even me. But I remember my teacher at the time, explaining to me, slowly and loudly and in a sing-song voice, that I did this, “To. Gain. The. Attention. Of. Other. People.” The sound of that sentence is embedded in my brain because I heard it so much that year, always repeated in the exact same voice. At that point in my life I did not know what the word “attention” meant (my receptive vocabulary was pretty bad), nor could I really understand the concept of wanting someone’s attention in that way even if I’d understood the word, and all I could really understand was the tone of disapproval in the teacher’s voice, but also the tone of satisfied knowingness, like she had caught me out at something. This puzzled and troubled me for a long time, and I wondered what I was always doing that was so wrong.

If I’d known what attention meant, I’d probably have tried to avoid it. Not that I didn’t like any attention, but then, as now, I prefer friendly and quiet sorts of attention. Loud congratulatory sorts of attention made me cringe (some still do), as does the “negative attention” that people so often assumed I sought as a kid. Direct communication of an emotional kind, even of a positive sort, and especially if it made reference to something supposedly going on inside my head (whether it was or not), was often the sort of thing that confused and scared me. It’s not other people’s fault for not knowing that, certainly, but I still react that way, which is one of the things I find pretty aversive about publicity. It still makes me want to squirm around and run off, although certainly less intensely than it used to. I prefer most of my attention to be mutual focus on something rather than focus directly on me, and I’ve to my knowledge always been like this, I’ve just built up some amount of armor against it over time to survive in a world where direct regard of certain sorts is a matter of course. I like having friends, I like spending time with people, I like when my friends care about me, I like caring about my friends, I just don’t like certain kinds of attention, especially the kinds people usually mean when they call someone “attention-seeking”.

There are also plenty of things where I’m doing something in reaction to some aspect of other people, but not in order to provoke a reaction out of other people. Unfortunately even the things I do to avoid attention come across to some people as attention-seeking.

What I’ve found really interesting (and by turns frightening, amusing, exasperating, and annoying) about all this is that people seem to assume that the vast majority of what another person does is directed at them in some way, or at least directed at making a specific impression on them. While I now, out of self-consciousness, react to my fears about what other people think (and what they might do to me based on what they think, more to the point), the vast majority of the strange things I do have nothing to do with what other people think (or if they do, it’s in a roundabout fashion, not in the way people would assume). There is often an internal reason, or several internal reasons, for doing what I do, sometimes known to me and sometimes not, but only very rarely does it have anything to do with influencing or manipulating people or gaining their attention or even communicating with them. (And those things that are genuinely intended to communicate, you have to know me pretty well — or know that system of communication pretty well — to differentiate them from other things.)

I am very curious as to how much of most people’s actions are directed at the goal of gaining the attention of or manipulating other people, because the amount I get accused of things like that seems all out of proportion to the amount that I actually do it (which in both cases is probably less than most other people do it, in some cases far less). I’ve encountered a few people who even have read (and believed) some theory that practically everything a person does is designed to get them various units of positive and negative attention (I can’t remember the exact words for this, but there was a whole jargon around it), and I found that a pretty alarming and egotistical-sounding construction of the world, and doubted it could possibly be true. Interactions with such people tend to be frustrating because they take every single thing a person could possibly do and assign bizarre motivations to it. (Some of these people, by the way, were autistic, so I’m not posing this as an autistic/non-autistic divide, if anyone’s wondering.)

But I don’t know how much of most people’s actions is geared towards gaining various sorts of attention. Most of my actions don’t have much to do with attention at all, but many of the ones that do have more to do with warding it off (my first interpretation of many kinds of attention, positive and negative, is as if it’s a threat) than gaining it. Given the amount that many people (both autistic and non-autistic) see “attention” as the primary motivation of most people as far as I can tell, I wonder exactly how commonplace it is (I also wonder what’s so bad about wanting attention, in people who want it — why is “attention-seeking” an insult in a social species?). It sound frankly pretty exhausting, I don’t think I would be able to constantly measure and adapt my body to influence other people or gain attention from them, even if I really wanted to. Are other people constantly doing that? If so, where do they get the energy? Or is it that they actually believe the attention they themselves bestow on others is so pleasant to be on the receiving end of that everyone must want it? Do they really not see how many of a person’s actions can be for internal (not necessarily selfish, just not done for the attention, manipulation, influence, or gratification of others) reasons that have nothing to do with other people at all?

The Awful Prison of Autism.


Note: I’ve been trying to write a post for the upcoming blog carnival for awhile. One of the posts is forthcoming, but is going to take a long time to write, and I don’t know when I’ll finish it. It demands a large amount of precision, carefulness, detail, and complexity, and I don’t have those in abundance in my current physical state. The other — this one — I’ve been struggling with how to find the words for. I hope this post will make sense. I hope it doesn’t come across too much like a rant, it’s not meant to be. It’s not my best writing, and it’s not my best in terms of explanations of things. I don’t always explain how I got from one idea to another. I’ve done my best, though, with what I’ve got at the moment. I hope also that anyone who finds themselves referenced in here doesn’t take it too personally, because most of the things I’m referring to are done by multiple people including at times myself, and I’m not meaning the “this is bad” as “we are bad” but rather “we shouldn’t be doing this”. And now that I’ve finally finished writing my post to the carnival, I can set about actually writing the post that will be the blog carnival.

I’m sure the title of the post got people’s attention, at least if they know anything about the way I usually write and the fact that I don’t normally use this language. It doesn’t have to do with being “trapped in being autistic” or any of those awful clichés, though.

It has to do with the same ongoing conversation I’ve been having with my friend. The problem with relating such a conversation verbatim is, we share a lot of ways of understanding the world. She knows that when I say something, then I mean something particular, and I don’t mean this other thing, and so forth, and she knows a lot of the stuff I’ve left unsaid because around her I don’t have to say everything. (Normally I just forget to say parts of things anyway, but around her it matters less because she has enough of my background to know what I mean and what I’m leaving out.) And she knows how I view the world and isn’t apt to take word-sloppiness on my part the wrong way. It’s very different writing in public. And I’m both sick (same thing Joel has) and recovering from a tooth extraction at the moment, so harder than usual to write stuff.

Anyway, in our conversations we kept referring to this box. And I still haven’t the foggiest clue how to describe it. So I’m just going to describe pieces of it.

In response to my video In My Language, some people have expressed surprise at the fact that I used primarily a Western tonal system in the song I was singing. I don’t know how to put it any less bluntly: I grew up in a predominantly white, middle-class California suburb. I don’t know what kind of music people expect me to have been exposed to, but I was exposed to the same music my brothers were growing up and the same sort of musical training. Combine that with perfect pitch and you get the picture. I don’t think anyone would be shocked that my brothers use the standard Western musical scale. But for some reason people were when I did.

Similarly, some people have been very weirded out by the fact that I make my videos the same way most other people do: I film different things. I put them together in the order I want. I add sound if needed (sometimes I use the sound from the camera, sometimes I don’t). I add captions. I put the whole thing together, and I have a video. This should be no more surprising to people than the fact that someone who grew up in Californian suburbia uses Western musical scales.

Both of these reactions to my work reflect something I find hard to pin down in words, but I know it when I see it. It is an expectation that because I am autistic, then I am wholly and totally different from other people, and wholly and totally separate from the cultures that I am and have been a part of, and am “authentic” only inasfar as I differ from what would be expected of a non-autistic person otherwise of my background.

Perhaps it has something also to do with what Dave Hingsburger wrote in his post about prejudices he had about disabled people. He at one point in the post hadn’t expected a French-Canadian woman with Down syndrome to speak French. And he hadn’t expected American Southerners with developmental disabilities to behave like Southerners. He hadn’t expected us to be as much products of our cultures as anything else, and still has to remind himself sometimes that we are.

I don’t understand this expectation to be separate from my culture. It took me a long time to even notice that the expectation existed. But the expectation does exist. It’s not limited to non-autistic people, either: I see a lot of autistic people struggling to fit themselves or other autistic people into the same limited and impossible boundaries.

It’s hard to figure out exactly where those boundaries are.

I know that one of them is that if I do something that is usually associated in people’s minds with autism, then if it’s not being done specifically because I’m autistic (or specifically because of certain aspects of being autistic), then I’m doing something wrong, somehow.

Take rocking for example.

Sometimes I rock because it’s just what my body is doing at the time, I don’t even notice it. Sometimes I rock because I am in a great deal of physical pain (I do have a chronic pain condition or three), and rocking makes it hurt less. Sometimes I rock because it feels good. Sometimes I rock because I’m scared or nervous. Sometimes I rock because I’m excited. Sometimes I rock because I’m overloaded, and rocking didn’t kick in automatically, but if I do it consciously then it cuts down the overload. Sometimes I rock because my body feels forced into making that motion and I can’t stop it. Sometimes I rock because it’s a tic or compulsion.

I found out recently that apparently there are good and bad reasons and ways of rocking, and that some are more legitimate than others, in an autistic person, and that as far as I can tell if I’m rocking for some other reason than the approved reasons, or in some manner that causes people to think it’s for some other reason, then I need to announce my reasons so that my body doesn’t confuse people (and I’m possibly even being deceptive if I don’t).

I suppose some of this is an expectation that because I am autistic, my life and actions should all center around being autistic, perhaps especially those parts of my life and actions that overlap with stereotypical aspects of being autistic. Or even that they do all center around being autistic. I recall someone online describing a conference they went to where this was seen as a dangerous thing to assume: Many people were being treated as if they were “just stimming”, when they actually had Sandifer syndrome, a complication of esophageal reflux that causes a person to move their body in certain distinctive and unusual ways. As I mentioned in an earlier post, I think people assume that my constant leg motions while standing are part of being autistic, but they’re actually due to a pain in my legs that’s worse if I stand still.

But even outside the medical world (in which it’s actually a danger to assume these things), it’s still sure a nuisance. I am who I am. That includes being autistic: autism is an abstractified word for some parts of a fundamental, pervasive, and important aspect of who I am and how I perceive the world. I’m a lot of other things, too. I don’t look at everything I’m doing and check to make sure that it fits in a box labeled autism before I do it, nor do I make sure that I announce to the world if I’m doing something for a reason that differs from, or may appear to differ from, “because I’m autistic”. The vast majority of autistic people, I would suspect, have this in common with me.

Another situation I don’t fully understand the words for:

I’ve been treated various ways throughout my life for appearing in the minds of people around me to be oblivious to things (whether or not I was actually oblivious to things, whether or not I was aware of “looking oblivious”, etc). I’ve had various forms of violence done to me (kicking, slapping, hitting, being jumped up and down on, etc.), I’ve had people wave their hands in my face, I’ve had people wave their private parts in my face, I’ve had people scream at me, make fun of me, lecture me, talk about me like I wasn’t there, talk about me like I was there and was just being a pain on purpose, grab me and tie me down (I suppose that one falls under violence), and so on and so forth.

One of the ones I remember the most vividly, though, happened in isolation rooms. I would be there for any of a number of reasons, only a few of which actually had much to do with anything I’d done wrong. And there would be staff there. And staff would be the nastier kind of staff, the ones who handle you roughly and taunt you verbally. And I’d of course be tied down so I couldn’t really move very far. And I’d be doing my best to ignore the fact that there were a bunch of really frightening people towering over me.

Anyway, in general, just as with bullies in school, “ignoring them” or even appearing to ignore them (for instance by being unable to move or react in typical ways) only intensified their desire to provoke me until I responded in some manner. They’d start making nasty, sarcastic comments about me. Then they’d get up close to my face and do it again. They’d get right in near my eyes and force eye contact. Sometimes they’d say — with the talking-to-me-as-if-I-was-more-disgusting-than-moldy-vomit tone in their voices — something like “Quit pretending you can’t hear us.” (Other times they’d just announce loudly that I was clearly unresponsive, it depended on the staff.)

Anyway, in that particular moment, with these people in my face saying various nasty things to me and insisting I respond, I would be terrified. Because, in these situations, anything I did or didn’t do, either voluntarily or involuntarily, was punished as Very Wrong Indeed. And I would be aware that if I showed signs of recognition, then I would get yelled at for not having shown them earlier. If I did not show signs of recognition, I could look forward to more attempts at provocation before they finally gave up in disgust. There was no good thing to do, and I was in varying amounts of control of my actions, so the outcome was something on the order of me lying there and rapidly alternating between clearly looking at them and looking through them, all the while terrified that they would notice one or the other, or notice something they imagined to be one or the other, and that I would be punished for whatever it was they saw.

That’s probably one of the more extreme forms of this that I experienced in life, and I still encounter variants on this sort of thing, people waving their hands in my face and screaming at me and so forth, but nothing as awful as that. But something to note is that there was something important about who I was that was visible in that moment of terrified flickering between various ways of looking at/through them. I’m sure it came across in my appearance in one way or another, although I’m not sure which way. (I have seen similar looks on the faces of other people in those places, and it was a clear signal of something of who they were, in that situation, at that time.)

And what people don’t always know is that this continues. To this day, when I know that I am being subject to scrutiny, part of me still reacts as if I’ve got a staff person (translation in this instance: person with life-or-death power over me) two inches from my face taunting me about either appearing too oblivious or appearing too aware. (I was telling a friend that and she said something like “Wow, there’s still some pretty large chunks of institution we need to get out of you.”) And there is still a flicker within my actions — “Did they see me? Oh no they saw me. I hope they don’t see me, I don’t want to get in trouble for existing again” — visible to anyone who knows what to look for, that does say something about who I am and in particular the fact that I do exist. It’s hard to explain, but that’s my best job at explaining it.

I especially experience that kind of terror in situations where I am doing something very weird and very much beyond my control. Particularly when highly overloaded and/or getting a bad migraine (yep, some of the things that I am sure people classify as “stims” are actually adaptations or reactions to migraines or nausea, too). I got it intensely while lying down on the floor towards the end of AutCom during my presentation there. I get very self-conscious at moments like that. I was like that even more extremely during the entire CNN shooting.

Anyway, I’ve had a lot of people who don’t know me very well add to my general fear of scrutiny, by seeing those flickers of fear during those moments and assuming they come from some other source. My manifestations of a fear of scrutiny get, instead of understood in their proper context (and even as a way that you can see who I am, more clearly than you can see it by looking at much else about me at that moment), scrutinized in a way that makes me come out looking very bad, which makes me afraid of scrutiny… which clearly spirals into a nasty feedback loop.

And that seems to happen because of another box I get put into as an autistic person, where somehow reactions like the ones I’m actually having are out of the question because either people don’t know that such experiences are possible, or they don’t believe that an autistic person would respond to them in the way that I do. Or something else that I’m not describing as well. A friend seemed to know what I meant, I’m hoping maybe someone else will too and fill in the details on this one.

Anyone who thinks it’s really fun to analyze my every movement in absolutely minute detail and read assorted (usually bad) meanings into it without even asking, be aware that you’re engaging in the same method of visual dissection and dehumanization that many autistic people (and others) are subject to from psychiatric or medical professionals on a daily basis. I’ve already experienced being around people who watched me 24/7 down to the littlest bit of eye movement and read whatever they wanted into it. I have no desire to repeat that experience. If you have never experienced anything like that, be very glad. But try not to do it to others. It’s at least as uncomfortable as being ogled sexually without consent must be for people who can tell when they’re being ogled (which I can’t), and it doesn’t actually do anyone any good.

In fact, in me, what it generates is a sense of helpless terror. Not just because of my experiences while tied down and scrutinized, either. I’m very aware that my actions (whether a result of being autistic or not) look unusual. I’m not in control of most of my unusual appearance: I can shift from one kind of unusual to another, at best. I cannot look “normal” for any appreciable length of time. I can, however, sit around trying to shift my appearance around because I’m afraid of scrutiny, and even some of that is more involuntary than voluntary (especially since I have the kind of tics where you do exactly what you’re trying not to do). And it comes out looking like some weird confusing mishmash of stuff. And during all this, I am acutely and painfully aware of the possibility of someone taking everything my body is doing in the worst way possible. When I see people actually taking things in the worst way possible, all it does is confirm my fears, which sets another cycle of general obvious twitchiness into motion, where I’m trying to fight my natural tendencies and then trying to fight the fact that I’m fighting them, and of course they’re coming out all over the place regardless because I can’t not look weird no matter what.

Sure, I need to be less afraid of what people think, and in fact being on television has a way of knocking that fear out of you just by the sheer magnitude of the exposure. But people need to also be aware that just because a person is autistic doesn’t mean they can’t be self-conscious and afraid of being judged, and just because a person is putting themselves out there in public for some reason is not an invitation to dissect their every move and treat them in a way you probably wouldn’t treat them if you actually knew them as a person (whether you agreed with what they had to say or not). All this dissection does is reinforce the boxes we’re shoved into, it doesn’t challenge them or look beyond them or notice that all that stuff a person is doing might have reasons beyond the ones you dream up in your head.

After experiencing all this, I have realized that I’ve judged some people way too prematurely and harshly — you can’t have the whole story from a distance, even if you think you do, and often it’s way different than it looks like. Sometimes the real explanation looks a lot more complicated than the simplistic explanations a person can come up with at a distance with what they don’t realize is extremely limited data.

The experience of people not allowing for self-consciousness or other experiences I’ve described in an autistic person, resembles something else I’ve experienced. When I was discovering that I was different, and discovering that I was falling more and more “behind” by the standard yardsticks of the social world I was in, I started fishing around for answers, and settled on the idea that I was “going crazy” (not too specific there, but I was a kid).

I started force-fitting myself into that and the other other boxes being given to me by those around me (including kids at school, psychiatry, etc) because somehow the idea of fitting into a box, even a very negative box, seemed like a step up from being namelessly weird in a way that I kept blaming myself for.

And it gave me a false sense that I was actually in control of my weirdness, rather than my weirdness being something that just was and was beyond my control, which I greatly feared because that would mean that I couldn’t change it. Similar to a relative of mine who literally said, “I don’t want Asperger’s because you can’t cure that” and tried for a time to view himself as purely “neurotic” and therefore presumably more fixable.

And then various circumstances in my life increased the pressure to pass for “crazy” (passing for “normal” was out of the question), and even to “pass for ‘crazy’ trying to pass for normal” past a certain point, and so on and so forth. And things spiralled out of control and it took me a years to drop that act, which I did in a very haphazard and non-graceful way and then put behind me as rapidly as I could because I was very ashamed of myself (somehow pretending-to-be-‘crazy’ is more shameful and bad in most people’s eyes than pretending-to-be-‘normal’ even if they amount to roughly the same thing with the same motivations).

(All of this is an oversimplification of what happened. I am leaving things out. Many things. I always do. This is unavoidable unless you want this practically book-length.)

Anyway, all that stuff, I get the sense that some people find it impossible that an autistic person would have had that level of insight, and that level of agency, to be aware of how they were being pigeonholed and to fit themselves into it, to have those particular fears, and to react to their fears and to what is around them in that level of an aware and intelligent manner. (That sentence right there is the part that connects this to my reaction to scrutiny. I think people’s reactions to both of these things stem from sticking autistic people in roughly the same part of the box.) Some also find it impossible that an autistic person would feel so much shame over this that they would not want to talk about it much. This is probably also why, when autistic people force-fit themselves (or other autistic people) into the “autistic” box rather than the “crazy” box, few people notice — they don’t think us capable of things like that.

It is also a major flaw in psychiatry. The system, in general, does not seem to recognize that many of its patients will be force-fitting themselves to what they think the system wants to hear or believe about them, or into boxes that seem to fit better than “no-box”.

Practically the only context in which they acknowledge it happening, is in what they consider a desire for staff’s attention. It seems that many people who work in that field are egotistical enough to believe that people frequently want the kind of terrifying attention they tend to bestow on people. In fact, much of the force-fitting I have seen in psychiatric setting, among me and others, stems from fear of staff, or sometimes defiance of staff in an attempt to reassert people’s humanity, or fear of the horrible things that befall those who don’t neatly fit into categories. Certainly not desire for staff.

This all brings to mind — associatively rather than logically, and I apologize for the amount of skipping around in this post — an autistic boy I knew in one institution (who was said to be totally oblivious and all sorts of other things he wasn’t).

His hand thumped his face lightly in a way that was, from the look of it at least, an unconscious mannerism.

A girl who lived there (and who over-identified with and emulated staff) smiled at him, “gently” grabbed his hand, and pulled it down, while a staff person looked on approvingly.

His hand immediately went up and kept thumping his face again, in the same manner as before.

The girl again smiled at him, made eye contact, “gently” grabbed his hand, and pulled it down. Staff again approved of the girl’s actions (and later commended her in front of everyone for being “good with” this boy).

The boy looked at the girl. Then he looked at staff. Then, smiling, he picked up his hand in much more slow and deliberate-looking manner and brought it up to tap his face again.

My interpretation of this was something like what it’d have been for me. And this boy couldn’t talk, so he can’t verify or deny my interpretation, so take it with a grain of salt. But it was something like, “This is my hand, and I’ll do what I want with it.”

The staff gave the girl a knowing look (a sort that included the girl temporarily in the category of “like staff and not like this boy”), and with the same knowing and superior sort of tone in her voice, said, “See, now it’s become a game” (she said “game” with a drawn-out emphatic “a” sound). The girl got the same knowing and superior look and tone to her as the two of them discussed how he was now doing this “for attention”, which they of course would now withhold from him so he wouldn’t get any ideas.

The idea that the boy could well be asserting his reality, and his autonomy, and his right to control his body and not have it grabbed away from him while he was engaging in totally harmless activities, and that there was something of who he was showing through in that action, totally escaped them. They were too wrapped up in the idea that he really wanted their attention. And they were probably, as I mentioned before, unwilling to attribute to an autistic boy with an astronomically low IQ score the kind and level of agency, intelligence, self-awareness, social awareness, and autonomy he was always demonstrating around them. They were fitting him into a box even as he was quite likely trying to struggle out of one.

(The story I just told ties into several of the things I mentioned before it, with regards to me and what people do and don’t expect out of me as an autistic person. I can’t tie them all back one by one and I hope readers will make the connections.)

They fit other people into boxes, too. There were many things people did that were standard human reactions to institutional and other environments. Reactions to having your selfhood under attack, attempts to make sense out of the world and respond to it in some way that allows for your humanity, and so forth, were all pathologized. I know an autistic woman who was in some of the same places I was in, and if I recall correctly she was labeled with oppositional-defiant disorder for, among other things, resisting her incredibly strict behavior program. I saw a smart girl who’d organized ward rebellions and enjoyed being a wild teenager, labeled with borderline personality disorder because the staff didn’t like her. I see this sort of labeling carrying over to various places on the Internet, where when people don’t like or don’t understand why a person is doing something they try as fast as they can to come up with a personality disorder or psychosis or something to best explain what the person is up to. As if there’s this thing inside the person’s mind driving their behavior, rather than the person themselves being a complex human being who is or was trying to figure out what to do in a given situation. I can’t stomach the psych-label-from-afar brigade for very long, but it’s out there being its own sort of box.

I find autism taking over a lot in the blogging world, too. I find myself pigeonholed as an autism blogger even if what I write has broader implications than that, even if I find myself connected to the psych survivor, DD self-advocacy, and disability rights movements just as much as I do to the autistic liberation movement, even if I feel just as disconnected and out of place in every single one of those as I do (which is a lot).

I also find that I write things about general experiences in my life, and people respond with things like “Hey, it’s not just autistic people who experience that, you know,” even if I didn’t particularly relate the experiences to being autistic.

I have a life that is and has been more than just a litany of (medicalized) diagnostic criteria and so-called “symptoms” of autism. I have a life that has been shaped by far more than being autistic. I have a life that includes all kinds of abilities that are not normally attributed to autistic people but that near-universally exist in autistic people. I have a life where being autistic is not the center of it. (None of these are to say that being autistic isn’t important, or that it can or should be discarded, or is bad.)

These statements are likely to be true about the vast majority of autistic people. But those darned boxes follow us around everywhere whether we like it or not. Having force-fit myself into boxes, and been force-fit into boxes by others, in the past, I now try to live my life in a way that says, “What box?” and totally disregards whether what I am saying and doing will be inside or outside of these boxes. But there are many penalties for doing that, which include reactions by both autistic and non-autistic people. Many of the autistic people who react the strongest are struggling with these boxes themselves, and do not fit in them any more than I do.

I understand very well why a friend, although she has written her autobiography, refuses to publish it. She knows that she will be fit into autism boxes, and possibly even made into a box for other autistic people to fit, which is unfair to both her and those other autistic people. She knows that people will view her entire life in terms of being autistic, rather than in terms of the person she is (who is an autistic person, no doubt, but is a lot more than that).

I understand also why another friend of mine is very openly disabled but doesn’t discuss specifically that she is autistic. She knows that the box will come crashing down to hem her in the moment she does.

I understand why some autistic people I have met and talked to, refuse to identify with the word “autism” at all, despite the fact that they’re definitely autistic. To them, the word “autism” has become synonymous with the boxes that autistic people are put into, and they want to live their lives, not be forced into boxes.

Autism is not the imprisoning box here though. Autism is just the abstract term for a certain way that people’s brains can think and process and respond to information. The box is what takes the myriad of full, whole, varied, and beautiful people who share the characteristics known as autistic, and draws jagged lines and boundaries straight through the middle of us in ways that cut like a knife. It defines some characteristics as okay for autistic people to have, and others as definitely not okay, and penalizes those of us who admit in one way or another that we will not be confined.

As autistic people, we have a choice in our ways of responding to this box.

We can try to force-fit ourselves into it as neatly as possible to avoid the penalties of being caught out of bounds. I have done this. I understand why people do this. I can’t wholly fault people for doing this, especially when the consequences of revealing the parts of us that fall outside the box can be deadly. (And in some circumstances they can be.) But I wish nobody had to.

We can also try to force-fit each other into it, policing the boundaries of who counts and doesn’t count as autistic, not by who really is and isn’t autistic, but by who fits into the box and who doesn’t. This is a favorite pastime in parts of the autistic community (and those who think no groupthink exists in this community are kidding themselves), but it’s a destructive one that makes people afraid to be or show who they really are, and makes more people likely to fear lack of acceptance if they don’t fit a mold. (Yes, autistic people can fear lack of acceptance.)

We can totally defy it, trying to do as many things outside of it as possible. Again, I understand the impulse, but I’m not sure this is really much better than trying to force-fit ourselves into it. Either one of them is force-fitting, and either one lets the box control you. Defiance of everything someone tells you to do is just a veiled form of obedience in the end.

(And I’m sure there’s tons of other possibilities, some of which I can think of, some of which I can’t. Insert them here…)

Or we can try as much as we can to live our lives as if this box doesn’t dictate anything about us. This is the one I really try to do these days. This is the one I favor. We can’t pretend not to be influenced by society, because every last person is, since we are all, even the most isolated, part of society and doing the influencing just as surely as we are influenced. But we can try to live our lives as who we are, not as caricatures of the autism-box or its opposite.

This “What box?” approach will have consequences for us, and some of those consequences will be negative. But it will also have incredibly positive consequences.

I read Mozart and the Whale recently, the autobiography of Jerry and Mary Newport, and they tried their best to be totally honest, and not to shove their lives into the box of what is expected of autistic people. They were very successful.

As a result of reading a version of their lives uncensored by the usual box that I see invisibly censoring most autistic people’s autobiographies, I’ve gained the courage to talk about parts of my life that I have been terrified to talk about before. Many of which fall far outside the boxes expected of autistic people, but are incredibly common experiences from what I’ve seen. I now want to talk about those things, to maybe have the same freeing effect on others that Mozart and the Whale had on me.

If I had read an account of some of the things that happened to me, written by someone else, then a lot of bad, tangled parts of my life might never have happened. I don’t totally regret those parts of my life, because some of them have forced me to grow in certain ways, but neither would I wish them on anyone who could possibly avoid them.

If everyone who gives accounts of our life (publicly or privately) is busy letting fear of the box censor those accounts to only the parts acceptable to the box, then nobody facing similar experiences can learn from us, because our accounts of those experiences will be skewed if we mention them at all. While I can’t blame some people for force-fitting themselves to a box, it perpetuates the power of the box and makes others more likely to force-fit themselves as well, and becomes a self-perpetuating cycle that’s hard to break. And I see it all the time (not just in the autistic community, but it’s the autistic community I’m thinking of right now — and anyone who says “but autistic people are incapable of this,” has gotten some of their information from the box again, because autistic people do this all the time).

So I wish on people, in general, the ability and the courage to live their lives in terms of “What box?” rather than in terms of one or another form of obedience to destructive unspoken rules that have nothing to do with how our lives really work or who we really are. The jagged lines of the box, that cut straight through important parts of who we are, and tell us which parts are acceptable and which are not, in a wholly arbitrary way… these lines are what should not be acceptable. Our lives — and not some box — are what define what autistic people’s lives can look like, and that is broader and more varied than any box will ever have it.

Again. And again. And again.


This is not the post I’m still trying to make for the blog carnival. I can’t seem to write that post. Instead I wrote this one.

I have a relative where a conversation with him can go like this:

Him: Did you know they found that some kinds of cat litter are radioactive?
Me: Actually they didn’t. There was one cat who’d ingested something radioactive, excreted it into the litter box, and the litter was taken to the dump and found radioactive. But it wasn’t the cat litter, it was the cat poop.
Him: Really?
Me: Yeah, check Snopes.
Him: Oh okay. Wow, I never knew that.

Which makes sense as far as it goes. The problem is, a week from then, this conversation can take place:

Him: Did you know they found that some kinds of cat litter are radioactive?
Me: Actually they didn’t. There was one cat who’d ingested something radioactive, excreted it into the litter box, and the litter was taken to the dump and found radioactive. But it wasn’t the cat litter, it was the cat poop.
Him: Really?
Me: Yeah, check Snopes.
Him: Oh okay. Wow, I never knew that.

And a week after that:

Him: Did you know they found that some kinds of cat litter are radioactive?
Me: Actually they didn’t. There was one cat who’d ingested something radioactive, excreted it into the litter box, and the litter was taken to the dump and found radioactive. But it wasn’t the cat litter, it was the cat poop.
Him: Really?
Me: Yeah, check Snopes.
Him: Oh okay. Wow, I never knew that.
Me: Actually this is the third time we’ve had this conversation.
Him: Really?
Me: Yeah.
Him: Are you sure?
Me: Yeah.


He doesn’t remember the previous conversations, and is likely to keep repeating the mistaken version of the urban legend (not that particular one, it’s just an example) for years. And honestly won’t remember it (or at least doesn’t appear to).

I used to think I didn’t do things like that, and be really puzzled by why he did that. I still don’t know why he in particular does that, but I’ve noticed something odd about myself in this regard.

I’ll discover something that I could swear I’ve never noticed before. Not necessarily something as trivial as an urban legend, either. It’s often something that knowing it makes a big difference in my life overall. It’s often the sort of thing that I can tell is a life-changing discovery, and an important one, and an amazing one. And so I write something about it, still really excited about discovering it for the first time, and/or writing about it for the first time (sometimes it’s something where I have known it for awhile but never been able to write about it).

And then I’ll be looking through the archives of my hard drive, and I’ll find references from two years prior to learning the exact same thing. And then two years prior to that. And then two years prior to that. And so forth.

I want to note something about this: I am not talking about things that are a “hard lesson to learn” in an ethical sense, where despite knowing that something is wrong and a bad idea and so forth, you do it again and again and again and have to keep “re-discovering” that it’s a bad idea. I am talking about the sort of things that most people seem to learn easily, incorporate easily into their background of knowledge that they already have, and then build upon. The sort of knowledge that is along the lines of “letters represent parts of words,” not the sort of knowledge that is along the lines of “I really ought to yell at people less often.” Certainly not the sort of knowledge that most people find easy to forget.

I’ve been talking to someone else who has a weird memory this way, and we’re figuring it’s a retrieval thing, not a storage thing. I am pretty sure that if something triggers the retrieval of certain knowledge, then the knowledge would suddenly appear somewhere. And I know from experience that when you trigger the recall of knowledge, my recall is very good, better than most people’s possibly. But without any trigger, it doesn’t stick in any state where it can be retrieved easily, and deliberate recall is difficult if not impossible and likely to yield fuzzy or distorted results when it yields any at all.

Jim Sinclair wrote in 1989:

I taught myself to read at three, and I had to learn it again at ten, and yet again at seventeen, and at twenty-one, and at twenty-six. The words that it took me twelve years to find have been lost again, and regained, and lost, and still have not come all the way back to where I can be reasonably confident they’ll be there when I need them. It wasn’t enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time; I’ve lost track of them and had to find them over and over again.

I don’t know if xe is talking about the same thing or not, but xe might well be. I have learned to be cautious about saying that I have discovered something for the first time. Because at the time when I am discovering that thing, it certainly feels like the first time, and I can’t remember having ever discovered it before. But then I can’t remember very much at any given point in time. Right now I can’t remember much that is outside the room I am in and the subject matter and knowledge that I am immediately dealing with and using, nor can I easily direct my memory outside of those bounds. I could discover something again for the first time right now that I’ve actually discovered twenty times before, and my subjective experience of discovering it would be exactly like those previous twenty times. I’m not blocking out the knowledge of the previous twenty times, I just can’t remember it right then.

I suspect that whatever the mechanism is that is behind this, also explains why I have been unable to retain (in any functional sense) a lot of knowledge and skills that for most people are learned and retained forever, and also why I seem to do some things seemingly out of nowhere that are unprecedented by my usual apparent abilities in any given area. Rather than retaining conscious and deliberate access to certain knowledge, I seem to retain the tools to find that knowledge again.

In that respect I am like a person with no innate sense of direction, who can find something with extensive use of maps, compasses, GPS receivers, etc. (Which would actually be a fairly bizarre experience to me because my sense of direction, while not as infallible as it used to be — and it used to be completely infallible including for places I’d only been to once — is still better than 99% of people I’ve met.) The only difference being that, in that analogy, the person would, if somehow the knowledge of a location was triggered instead of deliberate, be able to walk to that location with no problem at all and no clue how they knew how to do it. But then if they tried to go there on purpose, they would need to use the map and compass, and they might forget that the place existed at all and keep stumbling across it and “discovering it for the first time” even if they’d been there a hundred times before. But then they might keep going back there whenever something triggered their ability to do so, and they might “discover” the location of the place after they’d been going there for a long time without noticing it.

I also have a suspicion (although it’s only that, a suspicion) that an “area of interest,” be that interest simple or complex, sensory or intellectual, represents not necessarily just an area of interest, but a window of easy flow of information and focus of all sorts of abilities that can’t possibly focus on more than that area. For instance, finding words is difficult in any area, but finding words outside of a few specific areas can be impossible. What those areas are depends on the moment. CNN sent me a long list of pre-interview questions. All of the questions are hard. But some of them I answered like the following:

–What do you think about the war in Iraq?

I don’t like it. I have never written about it before, so I don’t have language built up to describe all the particular reasons I don’t like it, but they do exist. (This is one thing that isn’t always obvious if you get me talking about something I’ve already talked about before, is that there are entire areas that I have plenty of knowledge around and never figured out words for.)

But I think it’s not just about not having talked about it much before. It is also that it does not coincide closely enough with my areas of interest to be able to come up with words for it. I am interested in the war in Iraq, and I hear a lot about it, have opinions about it, and can see patterns and stuff that relate to it. But neither that nor the vast majority of my knowledge or interest is within one of those windows. People who know me well know me as having a lot more breadth of knowledge and interest than people who know me only by my writing. At the same time, people who know me only by my writing in areas that I am good at, would probably be shocked at the things I know and care about that I am totally incapable of communicating most of the time. (How many people know that I cried yesterday when I found out someone shot one of the seven remaining female Amur leopards?)

This is why, while there is a difference between someone who can write at length but only about their area of interest and someone who cannot write at all, the difference is not necessarily anywhere near as vast as some people believe it to be, and it is a mistake to assume that a person’s communication skills about one topic reflect an ability to communicate about anything else (or even a consistent ability to communicate about that topic).

I think the fact that I’m more about the tools to figure things out than the things that are already figured out (at least when it comes to what my strengths are), also means I see things that other people, having already “figured things out,” don’t notice. Sure, I might have to figure something out a hundred times over that most people figure out once and are done with for life. But that means I’m unlikely to figure something out, decide I have it all figured out, and never again see it from a new angle or as if for the first time. If I have to do it over and over again from scratch, I’m more likely to notice the flaws in what people think they know but never have to figure out, or in what they figured out so long ago that they’ve forgotten there’s anything to figure out about it, or anything more basic than what they already “know”.

It also means that by most people’s standards I must look (over time) some combination of haphazard, confusing, paradoxical, contradictory, regressive, backwards, unreliable, and totally outside their definitions of how people are supposed to operate (and therefore not really operating in exactly the way I do operate, but doing something else that is easier for them to wrap their heads around even if they’re completely wrong). But I don’t think I am by nature any of those things, I think I just look that way because of a configuration that’s as normal for me as other people’s configuration is to them. I think I’ve also been confused by myself, because the world tends to explain humanity in terms that don’t include people who operate this way, and it does so even to people who do operate this way, who are as likely to absorb the at-best-incomplete definitions of “how people work” as anyone else.

Reminder on the Disability Blog Carnival


Just a reminder to submit stuff to the Disability Blog Carnival by the 23rd (Monday) if you can help it (it’s fine to email me with submissions after that, for my email address just take the address of my website and turn the first dot into an @). Remember it’s fine to submit other people’s work (including even if you don’t yourself blog), it’s fine to submit stuff whether the person has been linked before or not, whether what the person has written was written a long time ago or just recently, whether you think the person would have submitted it already, etc. etc. All the submissions so far have been really interesting and I’m looking forward to seeing more. I’d been planning to look around for possible entries myself, but I’m sick and I keep falling asleep in the middle of writing sentences, so I don’t think I’ll be getting around to that, so again please submit whatever you think applies. Thanks in advance, and thanks to everyone who’s written or submitted stuff so far. See my other post on this topic for details.

Even Feynman got approached by the cops…


In talking about his late-night walks working on physics problems, Richard Feynman (who won a Nobel prize in physics) wrote:

On earlier occasions I was often stopped by the police, because I would be walking along, thinking, and then I’d stop — sometimes an idea comes that’s difficult enough that you can’t keep walking; you have to make sure of something. So I’d stop, and sometimes I’d hold my hands out in the air, saying to myself, “The distance between these is this way, and then this would turn over this way…”

I’d be moving my hands, standing in the street, when the police would come: “What is your name? Where do you live? What are you doing?”

“Oh! I was thinking. I’m sorry; I live here, and often go to the restaurant…” After a bit they knew who it was, and they didn’t stop me anymore.

(That’s from Surely You’re Joking, Mr. Feynman! — a book I’m finding alternately amusing and irritating. Irritating just in terms of some of the sorts of things he seemed to find “cool”, but mostly interesting and amusing.)

Except of course this whole scenario tends to work differently if you’re not a well-known physics genius, I suspect. (And no, I’m making no statements about Feynman’s neurology here. Just found it interesting that being deep in thought about physics problems also can get the cops suspicious, among many other things. And now I will go to bed, because I have to get up very early to get my wisdom teeth removed.)

“Gertrude Stein with autism???????”


The title of this post was the response an online friend gave when I first posted this privately (in 2005):

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