Category Archives: Uncategorized

Mar15

For Sharisa, and anyone else facing attempts at erasure.

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I wrote a version of this once for Sharisa Kochmeister, who was dealing with people trying to publicly erase her existence. But when I write it now, it is intended for anyone dealing with such attempts at erasure. I am writing it because it gets right down to the core of the problem, rather than getting lost in details thrown around by those attempting the erasing, the ones they will try to distract a person with. I am writing it because I know several people right now, Sharisa included, who might need to remember this:

Remember that when they attack someone you are not, they are not attacking you. They are just attacking something they think is you, an illusion in their heads.

It can harm you, because it can make people mistake the illusion for you, and they can act badly towards you based on that. And there is real danger, and I don’t want to downplay that.

But at the same time, they are hacking and biting and tearing and clawing away at a person who doesn’t even exist, someone they dreamed up in their minds. In the larger scheme of things, they can’t touch you, because they can’t even perceive you as you are.

Hate can’t understand love. Hate isn’t an action, it’s a state of mind. People in that state of mind are more thoroughly harmed by the hate they envelop themselves in, than the people they try to attack. Hate pulls a person away from reality. You have to be able to love in order to see who someone really is. A person enveloped in hate can’t do that. So all they are doing is ripping at all sorts of illusions they build up to surround you. You will remain standing even if they shred those to pieces, even if in fear you mistake those pieces for you at times.

I know how hard it is. I also know that when you go through things like this you often find out you’re stronger than you thought you were. Because any strength you have comes from something that nobody who hates you (and I tend to think attempted erasure of a person’s existence is the ultimate hate) can touch or even see.

It comes from the fact that you are a real person and nothing anyone does can change that. You don’t even have to try to exist in order to exist, you just do it automatically. Hate on the other hand takes constant effort, to push oneself away from reality, and to fight against what does exist. Hate will wear a person out. Simple existence will not.

I hope for their sake that the people attacking you learn how destructive hatred is to the person stuck in it. It can happen. I have seen people make that change, it is hard but their lives and the lives of those around them are better for it. But even if they don’t, I know that you will be okay, because you will still be there. You are not the imaginary person they are ripping apart, half plaything and half punching bag, and you are not just words on a screen or an example or symbol of something people have imagined up in their heads. And you never will be. You exist, you are a real person, and nothing can change that.

On a similar topic, you might want to read Cyber Bully by Donna Williams, which contains the excellent advice:

I don’t know where they get the time. It must rob their own families of quality time. And how can they escape that head space of militancy and hatred to really be accessible as parents, friends, brothers, sisters. In the end, their lives are suffering and they don’t even know it. They put so much passion into their cause in going after people, that it gets like a drug to them, and they are probably as available to their own families as an addict is when having a primary relationship with drugs. So as much as its really scary to find anyone pathologically fixating on me, in the end, whatever discomfort they cause me, I know there’s must be greater. Addiction is incredibly hard to live with and when these people think their addiction is their selfhood, they are far from any place of hope. Number 1 rule, no matter how personal they make it, don’t take it personally.

Mar15

Read all about Joe’s Functioning Level

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I Am Joe’s Functioning Level is a great post over at Asperger Square 8, highlighting the fact that most of what gets seen as “functioning level” in autistic people is how much a person can pass for normal at any given time, in a superficial way, regardless of any other traits or difficulties they might have (which nobody would believe anyway, since they’ve already imagined up everything they think they know about the person’s life based on superficial appearances). Read through the comments, too.

Mar13

Colored letters revisited in other languages.

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Someone asked me what a bunch of letters, I think in the Russian alphabet, would look like to me synaesthetically. My answer was that at first they would look like the colors of the letters that most resembled them in English (although some of them, I noticed that even if the Russian letter was, say, similar to a standard English numeral, I often interpreted it as a rotated and/or flipped letter instead of a numeral. No idea why). And then, if I ever learned the actual pronunciations, it’s a good bet that they would, if analogous to pronunciation I knew in my usual alphabet, grow to resemble the colors of those letters, and even the ones that were not the usual, would gain pronunciations of their own.

And, I know I have a lot of people’s mail to answer, but I’ve been among other things pretty absorbed in documenting how I now see Arabic letters. I took Arabic for a year in college, and while I remember almost none of the words (I remember some long strings of words, but reciting the Quran is not exactly conversational), I retained the alphabet just fine. So this is a foreign language whose alphabet I’ve already learned, which has correlations to the colors of letters in English now, as well as some of its own colors for sounds that can’t be easily approximated by English sounds.

So I’m going to warn you that what’s up ahead in this post is very long, very graphic-intensive, and not necessarily all that blind-accessible (I try to do descriptions, but don’t always succeed well). Also, please note that I was wearing tinted glasses and using as dark a monitor setting as possible when I made my last letters, so I just remade them again and they’ll look a bit different than before. (I still have copies of the old ones but they look all wrong.)

I’m now going to try to post this and hope it came out right.

Edited to add: You can hear the sounds of the Arabic alphabet here:

(corrected because I’d accidentally posted one of them twice)

Or, if you like it musical, here:

Or, if you like it musical with cute little kids singing it:

Anyway, on to the synaesthetic stuff.

Read the rest of this entry →

Feb28

Some side-by-side analogies

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In the recent Wired article, Volkmar used an analogy that said that acknowledging autistic people’s right to remain autistic, or acknowledging our capabilities, went like this:

Yale’s Volkmar likens it to telling a physically disabled person: “You don’t need a wheelchair. Walk!”

The Autistic Bitch from Hell responded, partially, with:

He deliberately promoted a false stereotype that all autistics need extensive help from psychiatrists to do the simplest things in life, while conveniently ignoring the large number of autistic adults who already were (and, in some families, had been for generations) successfully integrated into society.

A more accurate wheelchair analogy might be to say that Volkmar and his accomplices grabbed people who were walking along the street, forced them into wheelchairs, tied their legs so that they couldn’t move, and then pointed to them and said, “Look at how much help these unfortunate people need because they can’t walk without their wheelchairs!”

And all of this reminded me of an analogy I made several years ago for how psychiatry treated me when I was essentially terrified, despairing about my future, and losing assorted skills day by day while wondering why on earth I couldn’t sustain my previous abilities in some areas. I had no model for existing as a person like who I was, so I variously tried to escape this reality by coming up with an imaginary world that was better than this one, trying to decide that dreams were being awake and being awake was just a really bad dream, trying to force myself to forget that reality existed, trying to turn myself by force of will into assorted kinds of non-autistic people, and eventually attempting suicide. I eventually also figured out that none of that is the best approach to the situation, but I gave it all a really good try before giving up on it as an effective coping mechanism. :-P

The analogy seems really apt when stuck next to Volkmar’s and the ABFH’s, so I’m not even going to add to it:

To use an analogy, it was as if I had wandered into the middle of the street, oblivious to any danger in standing there, obviously missing some combination of knowledge and ability to apply that knowledge, but essentially still me. Someone had run over me and broken my leg. Then, instead of helping me out of the street and fixing my leg, they ran over my other leg and broke that, and then both my arms. Seeing that this was not working, they kept running over my legs and arms and telling me that there was something wrong with me for not getting up and walking away. Then, they got out of the car and started beating me over the head and screaming that there was something wrong with me. This is an analogy, but I believe it is a good analogy to what the system does to people who are different, or simply in the wrong place at the wrong time.

It didn’t just happen to me; it was happening to everyone around me, too. […] The puzzling thing was that while there were indeed many sadists and power-trippers in the system, there were others who no doubt went along with this puzzling behavior because they felt pressured to do so, and others who had been taught that this somehow constituted “help.”

I think those analogies are all interesting to line up side by side, since they’re all using walking as an analogy for other things, but at the same time going very different places with the same ideas.

Feb26

Some quick corrections and clarifications.

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There is not a lot I needed to correct or clarify, but there is a little bit.

In the Wired article, I’m described as cueing up a video. It can be inferred that it is a video I made, but it’s not, it is a video made by ChristSchool, and it is this one:

Then there was a quote attributed to me at one point, that actually belongs to D.J. Savarese. I was telling the reporter a story about how when Savarese was interviewed on CNN, he was asked whether he thought autism ought to be treated, and he said, “Yes, treated with respect.” That quote is attributed to me in the article, when really I was telling a story about what someone else said, and did say clearly that it was D.J. Savarese who said it.

I am guessing that both of these things have to do with the fact that the reporter’s tape recorder broke and did not record the interview as planned, so he was going off of notes, which probably involved writing down the words but assuming the tape recorder would pick up the exact names of the sources or something.

Another thing slightly off is the amount of time it said I spent on the Internet. I was emailed and asked about that, and I said sometimes I spend a lot of time, and sometimes I spend very little to no time. I am guessing that the “scary amount of time” part fits in better with geek culture. ;-)

But I do spend a fair amount of time offline, in reality: I have obligations in the rest of the world too, given that I have a neighbor I go over and assist with a time-consuming medical device on a near-nightly basis, a volunteer job involving cats (who don’t have net access) that I sometimes do often and sometimes barely at all depending on what I’m capable of, a cat and dog living with me who want to spend time with me, and a fair degree of exhaustion just getting through everyday stuff (I can get online from bed, but don’t always do so).

None of this is to say I don’t like the article, I just don’t want people to mistakenly attribute other people’s quotations and work to me in the process.

Feb7

If cats survive.

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This has absolutely nothing to do with just about anything I usually write about.

But I was watching this show recently about what would happen in the extremely unlikely event that something made humans but no other species go extinct. (They did not get into the near-impossibility of this scenario.) At first it was really depressing, but then they were showing how once all the cities were overgrown, housecats would take over living in the ruins off of all the small animals and birds that were now living there. (And they showed how cats already do that in some ruins.)

I know it sounds strange, but I could deal with the concept of extinction of the human race a lot better if I knew the cats were going to take over. I know that’s unlikely to happen — anything that would affect humans so drastically would affect other species as well — but if cats survive it seems less depressing.

Feb4

When did ‘equality’ become middle ground between ‘extremes’ that all look identical?

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I hear a lot about extremes and middle grounds and the like at times, when it comes to viewpoints in the autistic community (and/or general disability community).

My question is this:

Let’s say there are two viewpoints under discussion (and there are of course more than two, I’m just trying to make a point about the way two of them are often described).

One of them says that all people are of equal value, and ought to be accorded equal rights, including equal access to a society that systematically enables some people (with certain strengths and weaknesses) over others (with different strengths and weaknesses). (Notice that “equal” and “identical” aren’t the same thing — I’m not even going to publish comments on this one that says “But not everyone’s equal because not everyone’s the same.” We’re talking equal value as human beings and identical abilities, that’s two totally unrelated things, comparing them is like comparing apples and dark matter.)

Another of them says that autistic people are superior to non-autistic people, or that disabled people in general are superior to non-disabled people. (And I don’t mean “better at doing certain things”, I’m talking value judgments here.)

Why is the second point of view considered a “more extreme” version of the first?

Why is superiority considered a more extreme version of equality? As far as I can tell, it’s just the exact flipside of the majority view of disabled people, which is to say no more or less extreme than the mainstream views.

I am tired of hearing that people who believe that certain kinds of people are better than others have a more extreme version of my (and many others’) views on equality, and that therefore my (and many others’) views on equality can be considered a midpoint between assorted views on inequality.

Not that either “extreme” or “middle ground” is inherently superior to the other either, it seems more to me that people ought to focus on what is ethical rather than how their ethics compare with the society they live in so that they can either find an extreme or take what they imagine to be the average of several extremes without any thought to whether it actually makes sense to do either one of those things. (I think that a lot of people just use “extreme” as a shorthand for “angry,” “unreasonable,” “heatedly emotional,” or “I don’t like it,” and therefore want to insist that whatever they’re doing isn’t extreme. And then others use “extreme” to mean “cool”, and therefore want to insist that whatever they’re doing is extreme. Whether or not either of those is the case when they take a good look around the society they’re involved in and compare their views to that.)

And also not that autistic and/or disabled supremacists can, regardless of the offensiveness of their views, even do all that much damage in a society that’s so entirely slanted against them. (Making the opposite more of a general threat because autistic supremacy amounts to blowing hot air, whereas non-autistic supremacy is enforced from every direction.)

But seriously.

How is equality a “midpoint” between one form of inequality and another? Is this part of my surrounding culture’s obsession with finding “two sides” to every story and defining everything else as somewhere on the line between them (and this of course passing for objectivity), or what? Because I’m not seeing equality as some kind of middle-ground position between various forms of inequality (whether disability-based or not), it’s off in a completely different direction. Equality is actually pretty extreme compared to the society I actually happen to live in. A society which prefers to always make one sort of person or another inferior so that someone else can be superior, rather than accepting that all people are equal in value and then working to make things happen as close as possible to treating people as if they’re actually equal in value.

(And now back to lying down, I caught a mild (but really annoying) bug. Just because it had to happen.)

Jan30

I was full of crap, but I’m not now. I hope.

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I just got home from the hospital. I had impacted bowels, completely obstructed bladder, as well as mild liver problems and dehydration. I was there for about five days while they catheterized me and gave me more laxatives and enemas than I care to think about (and paid more attention to my shit than anyone’s paid since I had a similar problem 10 years ago).

I’m better now, but I am exhausted, and somewhat nauseated. If I haven’t gotten to your emails, requests, comments, whatever, that’s why. Don’t expect a lot right now.

Jan23

Backwardsness

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I remember this happening with several people I spoke to about the machine I tried at MIT: When I explained that it showed physiological stress whenever I moved (that is not remotely present in other people), they said something to the effect of, “Oh, so stress causes movement difficulties, and if you weren’t stressed out you wouldn’t have as much trouble.”

Well, yes, stress can add to movement difficulties. That’s discussed in an interesting way in Interactions of Task Demands, Performance, and Neurology. But I doubt that’s what the machine was measuring.

Imagine, for a moment, that you are running a great distance. By the time you get to the finish, you find yourself sweating and gasping for air.

Imagine further, that someone notices this. They then say, “Oh, you could move much greater distances, I bet, if we found something to suppress your sweating and panting.”

This would sound ridiculous, and be very dangerous for your body. Not being able to sweat is serious: I had that problem on some medications, and it greatly reduced my tolerance for heat (lower than it was already) and exercise. Panting is an attempt to get more air into your body more quickly, and trying to run on less air would not be useful.

But nonetheless, we have situations where they say “Your brain functions certain ways when you are depressed. Therefore these brain functions cause depression!” We don’t even know whether it’s the chicken or the egg, but they think they have the answer.

For another example, I saw an autism “expert” at a time in my life when I alternated between superficially good speech and either inability to speak or really bad speech, usually several times a day by that point. She told me that if she reduced anxiety, then I would not need to use a keyboard. While she picked up the fact that I was really stressed out around speaking, she didn’t pick up the fact that it was the act of speech that stressed me out, and that had stressed me out for my entire life, because of how difficult it was. She didn’t realize that a lot of the stress she saw was an attempt to use sheer momentum to keep speech going (or that this was a reason I talked so much when I did talk — if I stopped, I wasn’t always able to start easily again). Nor did she realize that a keyboard reduced my stress levels immensely in its own right. She just saw two things she thought were associated with each other, defined the causality on her own, and insisted she knew what to do about it and what the results would be.

Reducing stress is usually a good thing in its own right. (I say “usually” because sometimes, stress is a motivator that is indispensable to some people when doing certain things: there are times when if I don’t get enough adrenaline going into doing something, I’m not going to be able to do it. But I have to pay a price for that and so do most people, I have just paid a more obvious price than most, because losing speech is a tad more conspicuous than losing the ability to run really far for awhile.) But my strong suspicion is that this measured stress, for me, is a consequence of the effort of trying to move, not the cause of the difficulty moving.

I wonder why people so often get causality backwards on these things, and then seek to alleviate the result of a problem rather than the cause of it.