Monthly Archives: June 2011

Words that bite my brain


I can’t stand these words.

Words that cause a range of cognitive pain for me.

At minimum, there’s a sense of them pulling me diagonally. I may understand the meaning, but they still strike me wrong. If I do understand them, they cost cognitive effort to figure out. Not the kind of effort that anyone should be expected to put into understanding things that are difficult for them. That kind of effort is effort I’ve already spent understanding regular words. This effort is beyond that and is destructive to my ability to do other things I have to do. Have to as in have to, not as in “feel like doing”.

Then the worst of these words. There is little to no understanding here. It feels like a miniature explosion in my head every time I read them. I can’t find another way to put it. And the pain they cause, although not physical, is quite intense and feels like a cognitive version of nerve pain. Anyone who’s had serious nerve pain will know how bad that is.

Most of the words are ones I rarely if ever use. But some of these are words I can bring myself to use, some of the time. Some are even words I’ve coined. That doesn’t seem to matter though, they still hurt my brain. So don’t assume that my using or even coining a word means it being easy for me or expecting everyone to like or use the word.

I will say that these are words commonly used in communities that call themselves “social justice” related. The reason I put “social justice” in quotes is that, as a word in the midrange of mental pain levels, I can’t quite bring myself to write it down as if I were using it. That would make it look like I know what it meant. (Not that that always stops me from using a word, but it often does.)

There’s a reason, though, that I’ve abandoned the idea of writing most of these words down in public, in this post.

Because when I’ve brought it up in the past, I’ve gotten a variety of pretty offensive responses.

People patronize me.

They treat me like not knowing these words is a sign of some kind of privilege.

They openly brag about their extensive knowledge of the subjects the words refer to.

They assume because I can’t handle or don’t understand or outright get pissed at the existence of a certain word, then I can’t possibly know anything about the subject the word is supposed to refer to.

They try to patiently teach me the meaning of the word, ignoring me whenever I try to explain that this doesn’t work with this kind of words.

They suggest that I don’t like the words because I don’t experience the kind of oppression that the words were built to describe.

They sigh and roll their eyes and get scornful. Because I’m obviously just some noob who wants everything explained to me (possibly because of an overdeveloped sense of entitlement).

Often their reaction is more than one of those things combined. “Well I for one totally know what the word means. I’m an expert in that area. I guess you are just too privileged to understand. But here, let me try to explain anyway. (As if I should have to.)”

I know it’s not about that, though, because often I know what the word is trying to refer to. I just can’t connect that meaning to the word without a lot of effort and pain. And the connection is never really complete.

Let me just say straight out that I would rather deal with one person who gets words “wrong” (and may even use lots of words deemed offensive due to not being able to keep track of that kind of thing) and may sound “clueless” to the social intricacies of communities or the meaning of words, but has good ethics and a grounded sense of reality; rather than a hundred people repeating all the right words with only a superficial take on the issues at hand and a tendency to want to blend in more than to solve real problems.

I only decided to write this post after seeing other people mentioning their own problems with this kind of language. Not identical problems, but clearly I’m not the only one who finds these words difficult. I’ve seen suggestions that these kind of words can shut people out of the discussion, even if that wasn’t the intent. I have to agree. I also saw someone who had an extreme emotional reaction to a similar set of words, and they wondered if their brain was responding to something real… like something about how people turn words into some kind of rigid ideology, and I have to wonder about that too.

[Note: I may be unable to quickly process comments starting very soon and then for a couple weeks minimum, so please don’t be alarmed if your comments don’t show for awhile.]

Wheelchair coverings


It’s getting really hot out. And for a heat-sensitive person there’s very little worse than being in hot weather in an all-black wheelchair. So I decided to cover as many surfaces as possible on my new manual chair, with a very much non-black fabric. Here are the results:

My manual wheelchair from the front.

My manual wheelchair from the side.

[Photos show a manual wheelchair, first from the front view and then from a side view with the seat tilted back. The base of the wheelchair is purple. The seat, back, headrest, armrests, thigh guards, and leg rests are covered in a fabric that’s light blue with white clouds and white butterflies, and glitter.]

I ended up covering the cushion, the back rest, the headrest, the armrests, the thigh guards, and the leg rests with this fabric. I am completely unable to sew, so I did this all with scissors and an entire pack of safety pins. (Being careful when doing the cushion, that I poked the safety pins into the outer fabric cover, not into the gel.)

This is how I look right now:

Fey on my lap, with me looking exhausted.

[Image shows me and Fey. I’m flushed and generally inert-looking, and Fey is standing on my lap looking to the side.]

Because I’m completely exhausted to the point of nausea, which is never a good sign (although I wasn’t feeling great when I started). The bipap I’m using for central/obstructive sleep apnea has certainly increased my stamina, but not by this much. I’m now resting in order to get up the stamina to get in bed, which is another bad sign.

When widgetry and identity politics consign people to living hell.


Here’s an article, I got the link from NOBODY PASSES, Darling.

The article itself is Rich Man’s War, Poor (Gay) Man’s Fight. An excerpt (a long one because my brain won’t let me figure out shorter ones):

The President of the United States, a former Constitutional law professor lately suffering amnesia about the presumption of innocence, declares publicly that “he broke the law.” The United Nations Special Rapporteur on Torture, Amnesty International, and the American Civil Liberties Union express grave concern about the conditions of his imprisonment, and the spokesman for the U.S. State Department is forced to resign after calling it “ridiculous and counterproductive and stupid.” A letter signed by 295 noted legal scholars charges that his imprisonment violates the Eighth Amendment prohibition of cruel and unusual punishment and the Fifth Amendment guarantee against punishment without trial, and that procedures used on Manning “calculated to disrupt profoundly the senses or the personality” amount to torture.

The National Gay and Lesbian Task Force, the Lambda Legal Defense and Education Fund, and the Human Rights Campaign, having invested millions lobbying for “gays in the military,” have no comment. Of course not. Bradley Manning is not that butch patriotic homosexual, so central to the gays-in-the-military campaign, who Defends Democracy and Fights Terrorism with a virility indistinguishable from that of his straight buddies. He is not that pillar of social and economic stability, only incidentally homosexual, who returns home from the front to a respectable profession and a faithful spouse and children.

No, Bradley Manning is a poor, physically slight computer geek with an Oklahoma accent. He is, let us use the word, and not in a negative way, a sissy. Having grown up in a dysfunctional family in a small town in the South, he is that lonely, maladjusted outsider many gay people have been, or are, or recognize, whether we wish to admit it or not. He broke the law, the President says. And he did so–the liberal press implies, trying terribly hard to temper severity with compassion–because he wasn’t man enough to deal with the pressure. He did so because he’s a sissy and he couldn’t put up with the manly rough-and-tumble that is so important to unit cohesion, like that time three of his buddies assaulted him and instead of taking it like a good soldier he peed in his pants. And then of course he was so embarrassed he threw a hissy fit and sent Wikileaks our nation’s most closely guarded secrets, like some petulant teenage girl who gets her revenge by spreading gossip. This is, of course, the classic argument about gays and national security–they’ll get beat up or blackmailed and reveal our secrets. And NGLTF, Lambda, and HRC, with their impeccably professional media and lobbying campaign, based on the best branding and polls and focus groups that money could buy, have effectively demolished that insidious stereotype.

They have demolished it by abandoning Bradley Manning.

It took a lot of cognitive effort to cut and paste those links, and then choose, cut, and paste the excerpt, not to mention find the words to put in the title and introduction. Yeah, it’s one of those nights. (So far. You never know when the weather in my brain will change without warning, but right now it’s lousy writing weather.) I had wanted to do a post with several links to different articles I’ve found recently, but I realized I’d be lucky if I got this one post written.

Oh and I didn’t write this post to start a debate over whether what’s happening to this guy is justified, so if you feel the need to justify it, do it on your own blog (or on the blog of someone who doesn’t mind hosting such a debate). I wrote it because these sorts of power dynamics among “activist communities” (and indeed the whole structure of such communities) ruin real people’s lives. And so does the use of widget-based morality — something I’ve planned to write more about why it works that way but haven’t had the opportunity. And of course the power dynamics and the widgets are entangled in ways that more than guarantee this level of sheer tangled bassackwardsness.

Spider Smiles


It’s always “fun” to wake up to this kind of spider-smile leaning over your bed:

A spidery-looking Other Mother leans over Coraline with a creepy smile.

[Image description: From “Coraline”, a stop-motion movie. The main character, a girl named Coraline, is standing there as her “Other Mother” (a spider-like monster pretending to look like her mother, but with buttons for eyes) leans over her with a creepy smile.]

…and then have to let the person, among other things, wash your private parts. And to know you pretty much have to let them, because you don’t want to get a reputation for rejecting people for no reason (or “not good enough” reason).

And no, it’s not a sexual kind of creepiness. It’s more like a weird power dynamic, where the person thinks everyone loves her and that she can do no wrong, while running roughshod over everyone, human or otherwise, even above their vocal objections to her invasiveness. You can explain it to her calmly, or shout “No! Stop! Stop NOW!” and all she’ll do is giggle and keep doing whatever she’s doing, whether it’s barging into your bathroom while you’re on the toilet, trying to touch a pet who doesn’t want to be touched, or otherwise violating people in various ways. After awhile the giggling and smiling gets more and more creepy, and happens with more frequency the more you try to assert yourself. I think the spider-like component — which another client of hers has described as an “I’m gonna eat you” smile — comes from the tendency of people like this to “feed on” imaginary gratitude and the like (see My Contaminated Smile for something similar).

This kind of behavior is especially damaging to anyone who (like me) is so used to these boundaries being crossed that I often don’t think to defend them. As Dave Hingsburger explained in a video I saw once, that leaves us open to serious forms of abuse because abusers look for people who don’t push back the minute we experience invasion. It also erodes the boundaries between your own home and institutions. It’s a lot more damaging — especially after each “little instance” begins to pile up into something enormous — than any one instance would look on the surface to most people.

And I suspect a lot of people think it doesn’t matter when done to people who aren’t going to experience a whole lot of bodily privacy anyway. Wrong. I used to think it didn’t matter so much because I was used to lacking privacy and was very late to develop body modesty anyway, until I heard that explanation about how being “used to it” primes us for later abuse. Ever since then I’ve tried to create privacy in various ways when possible, even though I’m not used to it and don’t automatically “feel” some of those first levels of invasion the same way other people do. (I’m trying to build up to where I do feel them, with some success so far.)

One time she explained to me she was incapable of abusing power, because she was a Christian. I would love it if the world really worked that way (for any religion or lack thereof). It would be a much better place. But meanwhile she goes merrily on her way, dispensing really disturbing (but not technically against any rules) experiences with a big creepy smile and a chirpy sing-song voice.

How many humans approach animal experiences backwards.


(Modified from a post to a mailing list.)

I don’t think humans have the means of detecting that nonhumans (or specific forms of humans) lack these kinds of (“secondary”) feelings. It wasn’t just that I thought Temple Grandin lacked the expertise, it was that I think that people lack the ability to determine that someone can’t feel something — except ourselves.

There’s usually an assumption that most people take for granted about animals (and about specific kinds of humans, including very young humans and many kinds of disabled humans), that… they’re basically as close to a blank state as we can possibly get without denying something that’s too obvious to deny.  And so instead of figuring “these feelings are possible”, we feel that each and every feeling they feel (as well as their intellectual abilities and self-awareness) must be proven by rigorous scientific method.

That’s coming at it backwards.  There should be really really good evidence those things are not there before we start assuming that they aren’t.  (And often that should be on a case-by-case basis.)  And really good evidence means really good evidence — not what passes for “evidence” in a culture that already views certain kinds of beings as as blank as we can feasibly paint them as.

(I’m not saying there aren’t humans without certain experiences.  The amount of enormous holes in my understanding/experience of the world (both growing up and later) compared to usual understandings of the world is truly astounding to me even compared to many other autistic people I’ve known.  I’m just saying, that’s not an assumption we should be making about entire categories of people, even categories we happen to belong to, let alone categories so obviously different that assumptions should come harder, not easier.)

Plus… for instance, I look at cats, and I see that they have realms of experience entirely closed off to humans.  That’s rarely acknowledged either — humans are seen as the “full” form and then cats (and other nonhumans) are seen as having like… certain chunks out of the (“full, human”) experience and then blankness everywhere else.  There are undoubtedly animals with feelings humans don’t have, and life forms with experiences of the world so different from humans that we don’t think they have experiences at all.  (Because we start from human as “the full experience of the world” and work “backwards” through animals and various atypical humans.)  That’s just a really warped understanding of the world, yet a lot of humans seem to take it for granted.

(And in so doing, they miss the vast amount of feline communication that it is possible for them to decipher, because they’re too busy thinking over the top of it to notice the subtlety of it.)