Monthly Archives: December 2006

Favorite Post of Every Month


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.


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.


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.

It’s finally snowing.







We’re finally getting some fairly serious-looking snow here, compared to what we’ve been getting. Click on the pictures to see the larger size, or else go to my snow set on Flickr and view them there (takes some clicking around that way to see the biggest size, but it’s there).

I also took a couple from inside the building. One is from my apartment (where I could open a window to take it) and the second is from the top floor (where the only windows that open have screens, and I didn’t want to get in trouble for dropping a screen eleven stories, so I took it from inside).

a view of part of Burlington and the lake

That last one I kept at the very high resolution when I uploaded it, so you’d have to click on it to get that one, I don’t think Flickr points to that one automatically. I left it that way because it looks really cool to see all the buildings and stuff so detailed. I took it from the room that Laura and I had to stay in last year while they were working on our apartments, which is back to being a lounge instead of a crappy apartment. If you look towards the back right you can see a wind turbine that we liked to watch when we were up there.

International Autistic Complaints Choir


AutismDiva’s place is where I first heard of the complaints choir concept, which is basically organized griping set to music.

The people at want to organize an international autistic complaints choir, not tied to a location but to autistic people anywhere (and the music would all be coordinated by net too, but first we have to have the complaints — both large and small-scale things — so they can be written into music).

To see what a complaints choir is, go here. (That site also describes the process that usually goes into creating them, starting with getting complaints to people. And has videos of four complaints choirs with captions in English.)

Feel free to submit complaints etc on the following board we’ve created for that purpose (and it has links to the videos of two of the complaints choirs).

Please also spread the word anywhere you think autistic people might be interested, and point back to that bulletin board.

Baking is different.


In order to understand the significance of this post, you have to understand what happens when I cook. I can explode eggs. I can cause large columns of flame to erupt from frying pans. I could burn water, or at least melt cooking pots. Etc. I literally can’t cook to save my life, and I can screw up nearly anything. I have been banned from kitchens, both officially and unofficially, and technically I’m considered too dangerous in the kitchen to cook without supervision (and too unskilled to cook much at all).

Apparently baking is different.

Swedish tea ring

I made that this morning. When I say I made that, I don’t mean that I directed staff to make it, I mean that I made it. It is the third time I have ever baked anything in my life (and the first was also one of these, that turned out just as good, although this year I left off one of the icings because it was way too rich).

It’s a tea ring. My great-grandmother’s recipe. I was raised being told it’s Swedish, although I’ve heard of similar things from Norway and Germany (and of course Minnesota).

It’s a little bit uneven because my staff hadn’t bought all the ingredients, so she had to run out to the store for raisins, and the dough was trying to rise before it was supposed to, and I was in a hurry and couldn’t make it as straight as I wanted to. But otherwise it turned out well, and tastes good too. (I want to try making another one with all the ingredients around so I don’t have to rush.)

It seems that my horrible cooking makes an exception for baking. I’ve so far made three things, but several people have told me that the things I’ve made have seemed more like I’d been baking a long time. So I might finally actually have a useful skill popping up out of nowhere for once.

I’m assuming it’s related to the fact that there’s not as much time pressure and weird touchy things-have-to-be-just-right-at-this-moment bits when baking as when doing normal cooking, and to the fact that the more physical aspects of baking seem to resemble construction or sculpting projects more than they resemble cooking projects. But whatever it is, I’ve just been handed a recipe for dinner rolls from my neighbor and told to make them for us.

(Edited to add: She told me to edit this to tell you that the dinner rolls turned out really good.) forums are back.


The forums are back up and running.

They include a forum called Support for Children of Curebies. Which is exactly what it sounds like. I’ve run into a lot of people online who do not want to be cured, but whose parents want to cure them. That’s a place for them to meet. It’s open to only autistic people, but be aware that it’s the Internet, our screening techniques are not perfect, etc.

If you are autistic and want to be added to the autistic usergroup (which will allow you access to that forum), IM me (I’m silentmiaow) and I’ll add you. Autistic in this case means anything considered autistic “spectrum”, diagnosed or undiagnosed.

Also — THIS IS A SEPARATE TOPIC ENTIRELY AND NOTHING TO DO WITH THE AUTISTICS.ORG FORUM — this topic has links to where to find text-only Second Life software.

Pseudo-allies and one reason many auties have trouble spotting them.


(I don’t have the time or energy to get into a discussion of what “treating adults like children” says about how people treat children. Please don’t assume I haven’t thought of that. And, as usual, this applies to far more than the autistic community.)

Last night the discussion group on Second Life veered into the topic of non-autistic allies and their involvement in autistic advocacy efforts. A few of us talked about the fact that often what happens, is instead of assisting autistic people to run our own organizations, our “allies” decide somewhere along the line that they make better decisions than we do, have better social sense than we do, etc. And start making the decisions for us and very much disliking it if an autistic person starts questioning their sudden presumed authority.

I am guessing this would be in the same category as Phil Schwarz’s pseudo-allies. A quote from that:

There are at least three varieties of pseudo-ally and pseudo-ally behavior:

  • The Missionary — gets points for helping us, but the problem is that they are often helping us their way. They get points; we get used.
  • The Vulture — exploits us, often making money off our needs, our work, or our lack of power. When a Vulture makes money off our work, it is often more money than we make off of it. The Vulture started multiplying at an incredibly fast rate after the passage of the Americans with Disabilities Act.
  • The Do-gooder — motivated by a conscious desire to help the less fortunate and a subconscious desire that is patronizing and condescending.

How does one tell a true ally from a pseudo-ally? Sometimes the language they use is a dead giveaway:

  • “Courage”, “inspirational”, effusive, excessive, unrealistic praise
  • “These people,”; “us” and “them” rather than “we”
  • Some true allies started out as pseudo-allies — but listened and learned and grew and re-examined their own motives and assumptions.

    True allies understand the distinction, and the problem.

But one thing it suddenly made me think of, is another aspect of the dynamics at work here: Many autistic people are totally accustomed to having people take over, being told that our decisions aren’t as good as other people’s, and so forth.

I’ve made a study of power dynamics for a long time. I’m not ignorant about the things that can happen between staff and their clients in the developmental disability service system, for instance. I’ve done a lot of observation and reading, and am fairly good at spotting patronizing or controlling behavior.

But even with all that background, I still miss it when it happens to me. A lot. I don’t understand until later, or I don’t understand until I see the contrast between how I am treated and how others are treated.

One time, as an adult, I went to a meeting. It didn’t go well. After the meeting was over, I attempted to approach the person who ran the meeting. That didn’t go well either. I restrained myself from doing anything particularly violent (although I was later written up for violence — long story, another day) and walked out of the room. I later found out that I was written up as going AWOL.

Understand: I am an adult. I am not institutionalized. I am not in prison. I am not in the military. I do not know a whole lot of other kinds of adults who can get written up as AWOL for storming out of a meeting in the middle, let alone at the end. This went on my permanent record.

Understand also: I am so used to being treated like this that it often barely registers.

When people tell me they’ll go to the store and buy something, then buy something different without my authorization, and pretend it’s the same thing. When people buy me little “treats” with my own money and expect me to be excited when I see them. I don’t notice this.

I can’t put my finger on the difference between how my staff (who I consider reasonably good staff) treat me, and the way Laura’s staff treat her. I see her staff interacting with her quite often, and I see my staff interacting with me. There’s an intangible difference. While she has plenty of her own staffing problems, her staff in general are less paternalistic, less patronizing, less apt to assume she’s incapable of decision-making, less apt to make decisions without even consulting her.

And there’s an air of respect to them. They don’t get in as close as my staff get to me. I don’t know how to describe that, I view it in terms of spatial relations. My staff try to get in further, they are more invasive, they have less sense of boundaries. Her staff treat her the way one adult treats another adult. We get roughly the same services for roughly the same reasons, but the difference is phenomenal.

The difference between us is that, while we are, both of us, cognitively and physically disabled (we’re both autistic wheelchair users with an assortment of health problems — different reasons for wheelchairs, often different health problems, but same general categories sociologically), I get services for cognitively disabled people and she gets services for physically disabled people.

But to get back to my main point, many autistic people are used to being paternalistically controlled. Those of us who question things the least receive the most praise in organizations run mostly by pseudo-allies. Those of us who insist on being treated as adults are likely to be seen as hostile. Because treating us like children comes so naturally, and we have so much come to accept it, that our trying to breach that is interpreted much the way many adults interpret children: As a childish tantrum rather than a legitimate assertion of our equality with the understanding that autistics need to always be in genuine positions of power in legitimate autism organizations.

A note there: Positions of power doesn’t mean finding the most submissive, status-quo-upholding auties you can come up with and putting them in tokenistic pseudo-power roles while grinding more assertive auties into the dirt. I have even seen situations where one autie or another is “the good autie”, and everything becomes “Why can’t you bad auties be like the good autie?” or even “Can’t you see you bad auties are hurting the good autie? Aren’t you ashamed of yourselves?”

The role of allies is to assist and support, not to take over and control and paternalize with occasional benedictions from “good auties”. And auties ourselves need to figure out how to notice when this controlling behavior is taking place, because so many of us (me included) are so accustomed to it that it’s all but invisible to us.

Cat avatar on Second Life


The other day, I picked up the following appearance for my avatar on Second Life:

humanoid cat sitting on a cat tree

It’s actually a wildcat avatar since it had more options for moving around and stuff than the cat avatar, but close enough. I’ve been mostly into realistic avatars, and still didn’t want to look like the norm for avatars on Second Life (which is to say, for females anyway, tall, skinny, and conventionally sexy), so I gave this one roughly the same build I have. Then Muskie gave me a cat tree so I sat on it.

For those who haven’t met me, I speak what Anne Bevington calls fluent cat. I’ve always been around cats, they’ve always made a fair bit of sense to me, I’m comfortable with them. When I was a kid I spent quite a long time “being a cat,” including walking around on the back fence keeping neighbor cats out of our territory. (I don’t want to know what they thought of the weird kid doing cat postures on top of the back fence.) I even did somewhat more, uh, embarrassing kinds of territory-marking. I could (and can still) make just about any noise cats can make, and most movements. My main regret was that I didn’t have a tail and swivel-ears.

So I always said if I was going to go for an unrealistic avatar on Second Life, it’d probably be a cat. So there’s my cat avatar. The only thing that bugs me is that it’s an anthropomorphic cat. I don’t totally understand the draw of anthropomorphic-shaped animals (besides humans and such). Aside from the fact that it’s easier to put into Second Life’s avatar structure. It’d be nice to have one that actually moves like a cat instead of like a human in a cat-shaped outfit.

Full list of cognitive biases etc.


When I posted about the outgroup homogeneity bias, someone in chat said she was interested in seeing the whole list the blogger I’d mentioned had posted.

The original blogger posted several things, and provided these links: List of Cognitive Biases, Cognitive Distortions, Woundology, and Maladaptive Schemas. The outgroup homogeneity bias was on the list of cognitive biases.

The cognitive biases and cognitive distortions seem to me more clear-cut and less fuzzy than woundology and maladaptive schemas, although there’s some important points made in the last two as well. The woundology and maladaptive schemas articles make important points but seem more approximated and force-fit than the first two.