Monthly Archives: July 2011

What a total non-apology.

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I’m not generally one to throw a blog post out there every time someone uses a disability slur. But the way this was handled is just pissing me off on multiple levels.

So a politician named Rahm Emanuel decided to insult a bunch of political activists by calling them “fucking retarded” when they didn’t agree with him on something.

Then when he realized this was going to get out, he called Tim Shriver (CEO of the Special Olympics) to apologize. This apology was apparently accepted. Newspapers are calling this an apology to the disability community.

Here’s where my brain’s starting to stall on me coming up with the language for it.

He didn’t apologize to the people the insult was aimed at.

Argh brain splitting up into pieces.

He apologized to Tim Shriver only because Tim Shriver has power and political clout and could have made his life difficult. Not for any other reason.

The slurs “retard” and “retarded” are used mostly on people with (all sorts of) developmental disabilities. If he were going to apologize to the people the terms are actually used on, he would have apologized to one or more of us, or all of us collectively.

Worse, Tim Shriver has no authority whatsoever to accept apologies on behalf of even one of us, let alone the whole of us collectively. He doesn’t even have a developmental disability, he just runs one of those primarily “of the nondisabled, for the disabled” sorts of organizations. While nobody can speak for all of us, if he’d really wanted to apologize to us, he could have started with apologizing to the heads of self-advocacy organizations. Even they couldn’t accept apologies on behalf of entire communities, but they’re closer to it than Tim Shriver is. (And why is it that when people think of DD people their minds always jump to Special Olympics?) And yet the newspapers seem to be totally buying it without even questioning. HELLO EVERYONE, WE’RE OUT HERE! REALLY!

This is just multiple layers of wrongness all piled up on top of each other. If I’ve missed one of the layers, it’s because this is really stretching my brain to write this and it hurts. Suffice to say, there haven’t been any genuine apologies going on here, to anybody. But if it’s wrong to use a slur and you genuinely want to apologize, then you have to apologize to the people the slur refers to (and directly to us, not to the most powerful person you can think of who “works with” us but isn’t one of us), as well as the people you used it on. No matter what you think of either group, if it’s wrong to use a slur then you can’t just throw a half-assed apology vaguely in the direction of someone sort-of-connected (but not actually a member) to one of the groups in question and just leave it at that.

Perfect description of shutdown

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I’m still sick. And pretty much the most intellectually strenuous thing I’ve been doing has been reading webcomics. I just happened upon this one. It’s technically about sleep deprivation. But there’s a particular stage of shutdown I get into where I’ve had conversations almost word for word like the conversation below, just not about coffee. (Clicking on the image brings you to the webcomic page it came from, on Questionable Content.)

Questionable Content strip #1477

[Image description: The comic title says "Number 1477: Read manual before operation." Hannelore and Dora are two women standing in a coffee shop. Dora is behind the counter, Hannelore is in front of it, looking confused. Dora says, "Hey Hanners, what's up?" Hannelore says, "What? Oh, I'm in the coffee shop now. Hi, Dora." Dora says, "Are you okay?" Hannelore says "Oh, I'm fine, I'm fine! I hit that sweet spot at around 40 hours of bin' awake where you feel GREAT! Can I have a cup of coffee?" Dora says "I'll pour you some decaf. The last thing you need right now is a stimulant." Dora holds out the coffee to Hannelore and says, "Here you go." Hannelore takes the cup and stares at it. Hannelore says, "Um, what's this?" Dora says, "It's coffee. Like you asked for?" Hannelore says "How… how does it work?" while staring blankly and holding the coffee cup high at an angle where coffee begins to spill out of it. Dora, arms folded, says "You put it down on the counter, then go back to your apartment and go to sleep." Hannelore says "Ohhhhh."]

Thank goodness for that instinct.

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That instinct was back again this week. I’m pretty sure I’ve written of it before. Despite terrible conscious body awareness, this instinct has popped up to save me more than once. It tells me “There’s something wrong with your body. If you don’t find a way to detect and treat it, you could die or end up in the hospital.” It sounds ominous but it’s not a panicked “OMG I’m going to die AAAAAAACK!!!!”, it’s more like a calm but firm realization.

In the past, it has warned me of things like organ failure, untreated bronchiectasis (treated it’s only a little more dangerous than asthma, untreated it can kill you), and the beginnings of going septic. And this week it popped up two or three times (seemed like twice, but the first time it happened it seemed to be warning me about two separate things).

The first time it popped up recently, I was away at a recreational program. It told me to go home, not even to wait a day, just go home now. The warning seemed to be twofold: Something was going wrong with my lungs, and my body was so out of energy (from being pushed by others, but that’s another story) that I was experiencing symptoms I haven’t experienced since my last major health crash. Between the weakness and the coughing up disgusting colors of phlegm, this seemed pretty obvious, but the warning gave me the extra urgency not to wait overnight.

So I got some antibiotics ordered and went home. By the next day, my brain was actively checking out. By checking out I mean, being technically awake but not conscious of anything, or being aware only of these weird series of images that went by. It had a feel similar to past experiences of delirium, rather than shutdown or something, and during periods of better awareness I became very glad this was happening only in a familiar place among familiar people. And I was able to begin the resting that I badly needed in order to get through this in one piece.

I began to feel a little better the next day. But then, abruptly, things became far worse. I couldn’t get to the bathroom and back without falling or coming close. I sometimes felt like I was going to pass out. And I couldn’t get near food or water. I couldn’t put words to why, I would just try to drink and my head would turn away. And I felt generally cruddy and woozy. And most disturbingly, the instinct was back. It said “There’s something else wrong and this time it’s not your lungs or sinuses but I can’t tell you what it is.” Grrrrrrrr.

I told all this to someone who persuaded me to go to the ER. (Note: I nearly always have to be persuaded. A good friend describes my attitude to that place as “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.” I’ve just got friends who refuse to give in if I say I don’t want to go there. And mostly I’m glad despite my loathing of the place.) The reasoning was that the lack of water alone would make it harder to cough things up, and bronchiectasis makes that hard enough already, and that could spiral downward fast. Plus it wouldn’t be good to pass out alone in my apartment.

Once I got there, the events unfolded in a very strange way. Normally they’ll give me IV fluids for practically no reason at all, but this time (when I was actively saying I was unable to drink) they insisted on testing my urine for dehydration. I was having too much trouble holding onto language to explain a lot of things so someone was with me explaining them. They kept demanding to know why I couldn’t drink, and the person kept telling them that autistic people can have so much trouble describing subjective experiences, that sometimes “I can’t do _____ and I don’t know why” is all you can get, and that you have to really dig and do a lot of tests if you want to find the reason, rather than acting like nothing is wrong because the person can’t name it. I was treated radically differently from my roommate, who was treated with the utmost respect. (This is common for DD people in general, including autistic people.) They even tried to get me to drink water, which is weird as usually when I’ve been given IV fluids I’ve been perfectly capable of drinking but they’d never given me water in a cup. And all I could do was wet my tongue a little and then my head turned away.

Nearly eight hours later, they came back with a way more respectful attitude to me. Why? The urine test just happened to pick up on the fact that I had a UTI. And they now thought that between a urinary tract infection, sinus infection, and lung infection, I might just have a reason to have no appetite. So they then proceeded to give me two bags of IV fluids and a prescription for yet more antibiotics before letting me go.

What scares me is what would have happened if they hadn’t detected the UTI. It’s not like they were even bothering to look for an infection. The information just popped up when they were testing for something else. And while I could tell the problem was somewhere in my torso, that’s a huge area of the body to look through for symptoms. Nothing pointed me in the direction that a UTI would have been in. And this physician’s assistant was not doing what you should do with a sick autistic person (check for all common things that could cause the symptoms). In fact, since my way of communicating my loss of appetite was so unusual, she wasn’t even treating it as a loss of appetite but rather a matter of willpower or not wanting to drink.

But somehow despite all that I’m on all the antibiotics I seem to need to be on, and seem to have found all the infections that were setting off my “get treated or you may not survive or at least may end up in the hospital” instincts. I’m just glad those instincts are there, or I would have delayed if not avoided altogether, getting everything diagnosed and treated. I certainly wouldn’t have known anything but the lung/sinus infections was causing all the new symptoms. It’s odd to have a body that won’t tell me basic information half the time, but will tell me “You’re in danger, get help NOW.” I wish that simply communicating this instinct to a doctor would result in getting tested for whatever things seemed likely. I think I could do that with my GP, but not with some of the random people you get in the ER. And trying to negotiate all this while disoriented and confused is just… gah, I’m glad it somehow worked out because I honestly don’t understand how, especially given I wasn’t “all there” during times I needed to be communicating clearly.

By this point I’m pretty wiped out and still having appetite problems, but I’m feeling a lot better. I don’t need my bipap while awake anymore, I can get around a little using my old crutches for stability, and my brain is no longer randomly checking out, nor do I feel like any moment my surroundings will burst into a Disney Acid Sequence (warning: the link is to TV Tropes and may suck you in and spit you out twelve hours later). And I’m hoping we caught everything the instinct was talking about.