Daily Archives: December 31, 2006

Favorite Post of Every Month

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I like this idea a lot better than the idea of the first line of the first post of every month or something (like I did in my last post). So, instead, if anyone wants to post links to their favorite blog post they made every month (I suppose this mainly applies to people who blog more than once a month), that sounds like a much more interesting thing for a blog’s readers (and much more interesting to go back and do). Some of these were fairly close, and they’re favorites for different reasons than each other.

January: It’s What They Train Us Into, Not Just How They Train Us

February: On Fitting In

March: Many Ways to Do the Right Thing

April: Exploiting Our Stories. Destroying Our Sense of Privacy.

May: The Staggering Costs of the Chair- and Dark-Impaired

June: Just Look At Them and You’ll Understand

July: Anything or Nothing

August: Myth-Debunking, and an Additional Myth

September: Life’s Infinite Richness

October: Hey, Watch It, That’s Attached!

November: Either What People Are “Supposed To” Be Doing or Autistic and Non-Autistic Views of “Purposeless” Behavior

December: Self-Defense, Not Ego Trips

A one-thing-a-month sort of meme and random other crap.

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I think some combination of weather changes and other factors is really screwing with pain levels today. Right now, I seem to have joint pain all over (especially, though, my left jaw and both hands), a migraine, phantom gallbladder pain (which seems to for some odd reason flare with the migraines), and some kind of stomach pain (probably from the crappy food I had to eat for lunch, since staff didn’t cook in time and I had to get something at a convenience store instead). And on top of/underneath all that, the usual neuropathic pain that seems to be really, really bound and determined to convince my whole body it’s either sunburned or being ironed (and any spot that’s already in pain, gets extra special bonus pain magnification a certain radius around it complete with weird icy-burning sensations). And I seem to be at that stage where my body runs out of natural painkillers and just starts screaming (although I just discovered that touching near-boiling water was extremely pleasant, if dangerous, and then ran water over my hands as hot as I dared without scalding them for awhile, and feel a little better).

That is to say, if I seem grumpy today, that may be an explanation, if not an excuse. I’m currently mixing up a home remedy I use for pain sometimes in emergencies, in the hope that I won’t bug the crap out of my neighbor when we eat New Year’s Eve dinner. I’ve been alternately online getting grouchier than I intend to, or lying in bed and trying to zone out.

Anyway, here’s one of those things people do during the New Year. I’m not totally into this whole New Year thing. It’s not a point where I tend to mark the beginning and end of years, if I do so at all. It seems arbitrary. Nothing seems qualitatively different about January as opposed to December. I tend to mark years in some more amorphous way when I do at all.

But anyway, regardless, people have been doing this thing where they post the first line from each month on their blog.

January: It seems like there’s a couple ways of portraying autistic adults in most books on the topic.

February: I am a mediocre hammered dulcimer player.

March: You were the ones who watched how we moved, then said what that must mean.

April: I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.

May: It’s Blogging Against Disablism Day.

June: I’ve long thought of getting a t-shirt that says “I’m the monster you met on the Internet.”

July: A famous quote attributed to Susan B. Anthony (who probably, like most feminists of her time, had atrocious views on disability, among other things, but oh well):

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

September: I was tagged for this twice, and finally finished it.

October: This still isn’t the post I’ve been trying to write, which is more political in nature.

November: I made the following video after observing a lot of things.

December: The following is a quote (used with permission) from a chat with Laura Tisoncik tonight (all the the following are her words, not mine, but they express something I’ve been trying to express for awhile):

I don’t like this version of a one-a-month meme that much though. I think I’ll write my own in a minute.

The hell of being asked questions.

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I am not sure if people totally understand what they’re dealing with when they try to ask me questions. I’m part of a study right now. I am being asked which autism organizations I belong to. I have been trying for months to answer their damned question. They say they are asking things in open-ended ways so that they can get my idea of what’s important rather than theirs. Fair enough. But ask these questions and it’s like pouring gibberish into my brain and expecting sense to come out.

I don’t think people get it. I really don’t think people get it. I am sitting here trying to write this. I have been trying to write this for months. It’s a simple question and I want to answer it. I want to answer it. I want to give them the answer. The answer is in my head. And the more I push the closer I get to a full-bore out-of-control meltdown.

If I were going to die tomorrow unless I answered this question, I still couldn’t answer the question.

Hand me the belt that I used at the Autism National Committee conference and I will be able to tell you all about how I used it to get around, and in the process of telling you that, I will be able to tell you that I belong to the Autism National Committee.

Ask me randomly what autism organizations I belong to and it is random chance whether I will even be able to tell you I belong to the Autism National Committee. And that is only one of the ones I belong to. I only came up with that just now because the belt was near me.

You’re expecting words to trigger memory, and more than that, words to trigger a particular process for accessing a particular kind of memory on purpose, and that’s not a reasonable expectation of many autistic people. (I know autistic people who are baffled by the fact that this is a problem for me, but it’s no less real for their lack of this as a problem.)

And this is one of those assumptions that goes well into the zone of dangerous, because it can create any of the following scenarios in medical contexts:

“But you would have mentioned it if you were really in pain, starving, dehydrated, whatever. You can write essays, after all.” (The ability to write essays does not grant me the ability to conjure up words in response to situations on demand in specific ways accepted by some general social consensus I was never invited to.)

“The first time you mentioned pain is the first time pain became a problem.” (I had painful migraines — that seriously restricted my activities when they happened — for years before I knew how to associate what was going on with the notion of what a migraine was, and then put into words what had happened.)

“You never mentioned heartburn before you heard someone describing reflux, so you must have decided you had it when you heard them saying what reflux was.” (That’s not what the lab tests showed. I felt the sensation, often amplified by neuropathic pain into something truly agonizing, for years before I knew what to call it. And I remember having it since I was very young, my parents remember it since I was a baby. I needed the description to trigger any mention of it in regards to myself though, and that is often true of many things in my life.)

“You only mentioned part of the pain you were experiencing, so you’re not in any other pain.” (It’s the only part that words came up with right now, the rest is there, may even be worse, but I won’t necessarily mention it. This is how I got reflux treated before I got neuropathic pain — far more severe — treated, even when the neuropathic pain had me literally writhing around and moaning.)

So as usual, this isn’t just annoying, but dangerous.

Right now, the situation is just annoying though. I’m not sure people understand. I can’t do this to save my life — I have literally not done this to save my life, on several occasions. There are ways to get information out of me, but these questions will not extract the information, or if they do, it’s only over so long that by the time the information is out it’ll probably be past the deadline. Wanting to tell you makes no difference.

I know there are autistics out there who think that wanting to do things and not doing them is some kind of perverse unconscious self-hatred. How does a person explain this to someone who can just hear a question like this and remember everything they need to know? Any more than I could, before, explain sitting within feet of food and not being able to coordinate everything (by which I don’t just mean motor coordination) enough to eat it. This isn’t self-hatred, this isn’t some kind of backhanded attempt to injure myself, this is a wall I hit that can only be gotten around by not taking this road in the first place.