Category Archives: Cognition

May20

Condensed old-post response to twisting of experiences

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Typing hurts so this is a condensed version of a long post. Apologies in advance for lack of nuance. The long version was written before my last several posts (written last week) and resemblance to later happenings (which in some places is strong) is coincidental.

This is about me but surely applies to many others so should be read as broad-contained-within-narrow. So should many of my posts which some people mistakenly read as person-specific or autism-specific.

People call up an image with words. They use it to sell their cause of prevention, cure, institution, etc. The image is in many heads a fuzzy stereotype, in other heads such stereotype imposed on real people yet untrue even on the people.

People throw words in my face one after another as justification.

The words evoke real inside life for me not life of hypothetical or outside person.

They say ‘banging head’ I know the feel the constancy the effects on vision motor skills and thinking and other-side-of-head splitting headaches and blacking out. I know counting of thousands of banging per hour.

They say ‘institution’ I see hear feel smell real concrete lived experiences inside.

They say ‘alone’ I remember total isolation. Also remember presumed lack of social interest while interested. And remember how long I believed, and gave up on the belief, that there must be other people like me in certain ways, in the world, before I started one by one finding them.

They say ‘in a corner’ I remember exact one corner, specific corner, spent ages barely moving all the details of this.

They say ‘no understanding’ I remember the waterfall sound of speech still often happen, and pattern rather than typical abstraction. I also remember still often people speaking as if I not exist not understand people even telling each other “she doesn’t understand”. I remember nonsense sounds that years later understood the words, that were thought I would never understand or remember. I remember understanding things others never even thought to understand and thus never tested.

They say ‘no communication’ I remember endless attempts to communicate ignored, robotic non-communication praised. I remember interpreter after interpreter barred from helping because “she could not possibly be communicating that complexly with only her body, we see no real communication”. I remember impossible to communicate many things frustration, I remember before I knew what communication was, I remember only knowing bits. I remember now using alternative communication, I remember gradual loss of speech.

They say ‘will never’ I think of all people said I will never do just ten years ago that I have done. I think of prerequsites for ‘independence’ that I never met yet but here I am in my own apartment.

They say ‘unaware of danger’ I remember balancing on fences, climbing trees in unusual ways, walking into traffic, licking or trying to eat inedible objects, sometimes unaware sometimes unable to do otherwise even if aware. I remember interest in straight lines and circles and shining lights so intense it overrides any notion of ‘wheels’ and ‘road lines’ and ‘headlights’.

They say ‘no initiative’ I think all the time I spent barely moved yet needed assistance waiting yet never got what I was waiting for because not moving meant to them empty-headed or stubborn. I think of also having different initiative than pleased captors.

They say ‘no sense of time’ I think of stare at object no sense of different between hour or day. I think random sleep. I think of moment passing without reflection. I think of barely even now grasping difference of past/present/future and my conception of the world being outside time.

They say ‘no body awareness’ I think of having other people touch to tell me where I am and how to move. I think of feel pain but not know where. I think of body as external sensation just as room is, cannot always differentiate pain or itching from a desk.

They say ‘bite self’ I taste it and see the bite marks on hands and arms.

They say ‘incontinence’ I not only know the feel but also the feel under neglectful circumstances and going everywhere instead of one place and sitting in it for hours if stuck.

They say ‘violence’ I recall caged-animal fear and lashing out and treated with more violence than I ever had the power to inflict.

They say ‘mind of a child’ and I see test results putting developmental so-called ages on what I can and cannot do, but never being those ages at the time.

They say ‘screaming’ I remember doing so until I lost my voice at home, in public, in institutions, or in other places.

They say ‘no emotion’ I remember emotions without usual expressions or not in the usual situations, being chastised for ‘inappropriate’ emotion.

They say ‘no personality’ I remember records stating I probably had severe/complex developmental disability prevented formation of cohesive personality.

They say ‘cannot dress self’ I think of prompting both physical and verbal, ‘cannot feed self’ and I think of help moving arm and when they move my arm wrong by accident and what malnourishment does to the body and mind with pain and irrationality and food-obsession. I think of being walked step by step through every activity of daily life starting not with “pick something up” but “here is how to move one body part, now here is how to move the part next to it, and the next one,” all the way through the task, collapsing in exhaustion several times throughout and having to start over, doing it wrong anyway, never getting it all done. I remember stopwatches and clipboards in futile attempts to teach me some of these things.

They say ‘no communicate pain’ I recall many urgent medical problems never mentioned even with adequate communication system. I recall also being told I was not in pain because no facial expression even in excruciating pain. I remember taught not to scream with broken joint. I recall 20 years of severe pain never diagnosed. I recall emergency workers (ignorant of auties) saying I must be on PCP because of total imperviousness to pain when fighting them.

They say ‘low functioning’ I see the records and hear the conversations that use this and many equivakent terms on me, not ancient history but a few years back. I see the bottoming on test results of ‘functioning level’. The expectation in people’s manner of my being not really here or thinking. The arguments about salvageability like I am a shipwreck.

They say ‘brain scan is proof’ I remember the proof that I had a ‘broken’ brain the brain scan used as ‘proof’ of so many things I was supposedly incapable of. I remember hearing people say “her brain beyond repair no sense helping her she is gone no longer a person didn’t you see her chart look at this look at this get her out of here worthless impossible to help nobody home” outside room I was strapped in.

When people use these stereotyped repetiton of words and phrases (non-auties do it too in both senses of the word stereotype!), or the photographs or drawings meant to evoke same, it is, bam-bam-bam, one in front of the other. Each one conjures up not fuzzy half-formed abstractions or images of other people, but real vivid immediate multisensory multidimensional concrete experiences from my life (not even the life of a person around me).

After that bombardment, people use it to justify things I find horrible, as if my mere existence is unthinkably awful. If I call them on it, well then there are the “But we don’t mean you” statements, the inability to conceive that these conjured-up constructs are more concrete and immediate for me than for them. If I try to explain these bombarded images and smells and sounds and feels and everything, my motives and emotional state and character become questioned and analyzed and demolished. (No I am not constant-angry, asking for pity, lying, or hating.)

But evoking these strings of experiences at me one after one after one and then barring my access to them and then using this to argue against everything I believe in is a lousy tactic. I do not need it explained patiently to me that my life and the lives of my loved ones exist, while simultaneously twisting meaning and value out of all of us and ending with “We don’t mean you” when so clearly they do.

May19

Eyeballs eyeballs eyeballs

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It’s been a long time since someone’s really been insistent with the eye contact while I’m squirming and trying to get away. I noticed today exactly how much I react to that.

So I’m sitting there in a doctor’s office, and he’s leaning towards me and sticking his face up to mine.

And I’m sitting there trying to think in a way that, were it in words, would go something like this:

Okay… he’s got to…. EYEBALLS EYEBALLS EYEBALLS he’s got to be unaware… EYEBALLS!!!! …he’s… uh… eyeballs… uh… EYEBALLS!!!!!!!!! people like him think this is EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS …some people think… EYEBALLS!! …some people think this is friendly… EYEBALLS!!!! EYEBALLS!!!! EYEBALLS!!!! he really doesn’t mean anything EYEBALLS EYEBALLS EYEBALLS he doesn’t mean anything EYEBALLS EYEBALLS he eyeballs doesn’t eyeballs mean eyeballs anything eyeballs bad EYEBALLS EYEBALLS he doesn’t understand why I’m turning EYEBALLS EYEBALLS EYEBALLS why I’m not coming up EYEBALLS why I’m not coming up with words EYEBALLS EYEBALLS EYEBALLS oh crap hand going banging head EYEBALLS EYEBALLS oh crap not right thing to do EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS stop hand now EYEBALLS EYEBALLS EYEBALLS is he saying something? EYEBALLS EYEBALLS am I trying to type something? EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS oh crap better remember EYEBALLS EYEBALLS remember EYEBALLS what I’m trying EYEBALLS what’s he saying? [shading eyes as if staring at sun] EYEBALLS EYEBALLS EYEBALLS am I saying something? EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS what’s going on?  EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD… segmentation fault

Etc. Until I finally reached some point of shutdown. And where every EYEBALLS is not just the picture of eyeballs but of something very threatening about to eat me or something. I unfortunately in all that couldn’t figure out how to tell him that it was his eyeballs that were unnerving me, and I’m not sure I did a very good job of convincing him that I’m not that freaked out all the time. It wasn’t just eyeballs either, it was leaning at me with eyeballs. I tried briefly to remember that people like him consider eyeballs to be friendliness, but it got drowned out in the swamp of eyeballs, and all thinking got drowned out in the end in a sea of fight/flight.

Note to anyone who interacts with me: Eyeballs do not help, unless by “help” you mean “extinguish everything but eyeballs and fear”.

May16

Exactly who is unresponsive here?

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I just watch the horrible public service announcement by Autism Speaks. (I wonder how that girl likes having her mother announce to the entire world that she’s thought of killing her, if you’re wondering why I called it “horrible”.)

One thing that struck me was that the children in the video were described as unresponsive, over and over again. And yet the children were responding to their parents and to their environments in general, and they were doing so in incredibly clear ways.

However, by the way the parents were acting, it might as well not have been happening. They went right on doing whatever it was they had been doing, as if the children were not communicating anything. The body language of the parents did not change in the slightest in response to their children, it stayed constant, and very very socially smooth.

Then, in order to get their children to “respond” to them (as if the children had not been responding already), they’d do things like try to force eye contact. As if eye contact is “connection” and “response”. There was also some grabbing and moving them around, as if they were objects, but without any responsiveness to the reactions of the children. I even saw children being driven into overload and then parents sitting there looking “sad” that their children did all these “behaviors”.

Where is this fabled unresponsiveness?

I see a lot of unresponsive non-autistic people in that video, I see people being, in fact, unresponsive in ways that would strike me as outright cruelty if I thought they knew better. (I don’t think most of them know better.)

But where is this unresponsiveness supposedly existing in the autistic people in the video?

Is it because their faces are not pointed the “correct” direction? (Do you have to be looking at someone to know they are there?)

Is it because they are not talking? (Do you have to talk to respond to people?)

Is it because they are flapping their hands and stuff? (Do you have to move a certain way to respond to people?)

I don’t understand it at all. I look at those children and I see overwhelming, repetitive responsiveness in the face of being totally ignored and shut out.

I’m remembering a time recently when I was trying to find something out from someone, and no matter how many times I tried to find it out, she gave me the same useless piece of information. (Which amounted to, “Just do what you’re told,” which was not what or why I was asking.) When I started banging my head, she started yelling, “Listen to me! Listen to me!”

And the whole time I was thinking, “I am listening to you, why the hell do you think I’m overloaded, lady? Now stop screaming at me or I won’t be able to quit hearing you long enough to stop this.” But she was utterly convinced that I was not listening, and tried numerous ways of getting in my face to ensure that I was listening, all of which ensured I had no possibility of either communicating or understanding.

Then someone walked through and asked how I was doing. I hissed — like a cat, and one of my more unmistakable sounds — and the person I’d been talking to went into patronizing-cheery mode and said “Oh, she’s doing greeeat.” Like I wasn’t even there, and hadn’t just said something, and hadn’t been banging my head moments before.

The sheer amount of people who look at me and view me as “unresponsive” when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as “response”. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as “responsiveness”. When those responses are not present, even if every other possible signal of response is happening, they view that as “unresponsiveness”. And they call us oblivious?

May12

More careful, not less.

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Dave Hingsburger has a training video about the ethics of touch in the human services field. He describes, in great detail, what kinds of touch are and are not acceptable, and under what circumstances, between staff and developmental disabilities.

One of the audience asked him something like, “Well what about people who are more severely disabled?”

Hingsburger’s answer was (paraphrased), “The more severely disabled a person is, you have to be more careful and more strict about boundaries, not less.”

This makes sense to me. Which is why it does not make sense to me when people talk about human rights as if they only apply to “mildly” or “moderately” disabled people (in whatever fashion “mild” or “moderate” is being defined at that particular moment in time, being aware these terms don’t necessarily reflect reality). They say things like, “This would be utterly horrible if it were done to nearly anyone else, but you’re discounting the more severely disabled people.”

To me, “more severely disabled” (however that gets defined) means less able to fight back, less able to talk back, less able to do anything about what is happening. (Where “less able” can mean “less enabled”.) And to me, that means being more careful about violating the rights of people regarded as severely disabled. Not less careful. Not disregarding rights entirely as if these are “special cases” who need to be treated with less respect than everyone else.

I am afraid of losing certain abilities. But it is not the loss of abilities that scares me. It is not the inability to move on my own. It is not the inability to understand or operate a keyboard. It is not the lack of certain kinds of communication skills. It is not loss of memory. It is not perceiving a jumble of patterns of colors and sounds and smells and movements and so forth without perceiving what other people perceive about it. These are things that happen to me from time to time, that may in the future happen more often. It is not the fact of these things that frightens me, though.

What frightens me is what people are likely to do to me. I have had people slap me, punch me in the face, kick my body, kick me in the head, shake me, grab me and carry me, twist me into different postures, stick their body parts into my private parts, grab my body parts and stick them onto other people’s private parts, wiggle their private parts in my face, leave me outside in the cold, confine me to an institution or an isolation room, regard me as ‘non-communicative’, have contests of jumping up and down on my hands, avoid making life even remotely interesting for me, and make all kinds of derisive statements and jokes about me. All because they could get away with it when I was unable to do anything about it, or because I was assumed not to matter.

Often people seem to assume that all or some of those things don’t matter when dealing with a “severely disabled” person. They may even believe that some of those things are necessary when dealing with a “severely disabled” person. Any of my fears about being “severely disabled” (well, I’m already classified that way, so I guess I mean “more so, in the conventional sense”) stem from those things that people can get away with, not from anything intrinsic to being that way itself. It’s possible to be quite happy while your body functions that way, but it is more difficult to be happy when being systematically mistreated, abused, and hated.

I am scared to tell about the time I almost drowned at the state institution. I am so angry. Don’t let me near a knife. I was in the bathtub when I heard them talking about me and saying, “Wouldn’t it be cool if Bedward drowned in the tub?” I heard them laugh and tell each other, “I dare you to go push his head under.” But then the supervisor came in and they stopped the plan. Yes, it was the worst day of my life.

— Roy Bedward

I have been in similar situations to the one Roy Bedward describes, and been unable to do anything about it.

People talk about institutions, aversives, and other awful things, even death, being better, or at least more understandable, for… that kind of person. Certain human rights being optional for… that kind of person.

I have to say I am with Hingsburger on this. In the area of human rights, and in being treated fairly, we need to be more careful, not less careful, with people who are less capable of doing anything about violations and abuse. Then, maybe, at times when I lose those abilities, I won’t be so terrified, and people in general won’t be treated like moldy vomit.  It makes no sense to argue for more violation of people’s rights the more “severely” they are said to be impaired.

May6

Overload thresholds really are pretty relative to the person.

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I’ve been meaning to write this post for a long time. I don’t know why I never ended up doing so, but I remembered today, so I am writing it today. I guess it falls under, useful things to know if you’re an autie and dealing with other auties. It’s stuff I’ve been figuring out myself. This may be stating the obvious for all I know.

Approaching dangerous levels of overload looks different in different people. Something important I’ve noticed, is that the signals for it are entirely dependent on the person, and on what their normal abilities are, and what their thresholds for certain kinds of shutdown are.

I’m remembering in particular a conversation I had with a friend once. She said… something like (I could be getting this wrong, I’m picking what I think was the particular trait that changed), “I’m starting to get to the point where words, spoken or written, are just running together and making no sense.”

I replied, “Yeah. That’s how things are a lot of the time for me. But in you that would mean trouble.” And we kind of laughed about it.

I remember, once, reading someone talking about an utterly horrifying experience he had. He described his mental state at the time in terms that are usually reserved for people who have no mental state. And then he told me what he meant by it, and it was something I experienced on a regular basis.

I still don’t agree with the words he used to describe it, but I’m starting to understand why it is that he would find it a lot more alarming, and a lot more of an “imminent danger” signal, than I would. It’s not part of his normal, it’s part of mine.

Likewise, I was at one point experiencing a great deal of pain with typing to the point where I strapped a bent stick to my arm and typed with the stick. The reactions of a woman who knew me, and a man who worked in the facilitated communication field, were very different. The woman who knew me was commenting on the frustration I was probably experiencing because of the speed issue, and the man was congratulating me on how well I typed compared to people who use more FC than I do. (Although I’ve seen FC users type way faster than I was typing that day.)

Meanwhile, I’ve seen people talk about dangerous (to them) levels of overload and shutdown, when losing skills I’ve never had in the first place.

This isn’t meant to be one of those vacuous statements about looking at how fortunate you are in comparison to someone else. It’s more the opposite. I can see a potential for auties to say, “Well I never had that, so losing it isn’t a big deal, I live without it all the time.” And I keep thinking “No, this is one of those things that really is relative to how someone is doing normally. For some people, losing the ability to talk signals a big crash, for other people it is commonplace. The fact that it’s commonplace for some of us does not negate the fact that it signals a big crash for others.”

May6

On “contradictions” and so-called prodigies and so-called savants and prejudice and being a freak on display.

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This is… more personal, and more emotional (at least to me, I have no clue if it comes across in the writing) than a lot of my posts. Just so you’re warned.

Julian of Amorpha replied to my last entry, talking about how people also try to discredit the writing of children, too, saying “A child could not have done this.”Which reminded me of a very annoying fact of my life, that I’d never fully connected together with this before. As a child, I could do things that children weren’t supposed to be able to do, too. Or some adults.

Not that I knew it, it’s even noted in my records somewhere along the line that I showed utter lack of awareness that I could do things other kids couldn’t. I was more aware, if anything, of all the things other children could do that I could not seem to do. But other people were very aware of it. And I didn’t much enjoy the ways they showed that awareness. (Being officially labeled an “idiot savant” is the least of it.)

I have a friend who was the women’s chess champion in her state at the age of fifteen. She refuses to play chess even at the age of fifty. I understand why.

I know this may sound weird for a blogger, but I hate being on display. Or rather, I hate certain things that being on display tends to entail. I don’t mind the actual fact of exposing my ideas for other people to see. I don’t mind the fact of communicating. I do mind… having to explain over and over again that yes, people like me can do the things we do. That it’s not particularly unusual among people with my brain configuration, etc.

Being a non-speaking autistic adult writer has a lot of utter nastiness in common with being a child prodigy. It’s sometimes worse in person, because on the Internet all you have is my word for the fact that I can’t do such-and-such and look like such-and-such. In person, people see a massive contrast between how I look and how I write, so massive that sometimes they block one or the other out to just not have to think about it. Or, to consider me amazing, without even knowing me, and not because I’ve done something well, but because I’ve done something well for a retard. It’s sort of like doing something well for a child. I almost prefer being attacked, to being praised and having no clue if I’m being praised for doing something well or praised for simply not being what someone expected me to be.

I know, of course, that there are ways I could avoid all this. I could avoid showing certain abilities in public. Sometimes I do. There are things I can do, and never do do, at least not in front of anyone, because I don’t want to deal with the fallout of the contrast between people’s expectations and what I am. No, they’re not things that would make me “more independent” or anything like that. They’re just weird little talents that I’d rather not deal with people’s reactions to. I’ve said before that I’d do them, if I could just not be me while I was doing them, and therefore not have to let anyone know that the rest of me is in total opposition to the sort of person they’d expect to do those things.

But I can’t always avoid it. I went to a sports event for people with developmental disabilities, and I did as crappily at most things as I expected, and then I picked up a badminton racket. And I’d never played badminton before in my life, but I kept beating the non-disabled staff (and they rapidly stopped trying to go easy on me), it was like all the links from perception to action came together in badminton. And it was a lot of fun. But then I was thinking “Oh great, I hope nobody makes a big deal out of this, I want to just have fun.” And it is fun. I enjoy the feeling of totally merging with sensation and movement like that. But I don’t want the “Wow you’re amazing for a disabled person” crap, nor do I really want a lot of recognition for it, I want to enjoy myself, or do my job, or whatever it is I’m doing at that point.

I also know that the way I’ve chosen to lead my life often leaves me with little choice but to sometimes bump up against those contradictions, and bump up against them hard. If I do advocacy in person, which I do, I’m going to bump into it right there. I sometimes use the contradictions in people’s heads to whatever advantage I can, in fact, in getting a point across. It’s necessary given the message I’m trying to send, and the medium I have to send it through. But there’s a downside, and the downside is not something I often talk about.

I’ve given speeches. Decent speeches, as far as I can tell. And then been so wound up afterwards that I’ve spun around in circles, meowed at the top of my lungs, flailed, banged my head, paced randomly, body-slammed walls, lost all connection to what the world meant except patterns of light and shadow (that my body then chased all over the place), screamed, and peed on myself (not necessarily in that order or all at once). With full awareness that many people were watching and would use my “weirdness” later on to amplify the supposed amazingness of the speeches.

In those situations, it seems like performing, even though it isn’t. Because people’s reactions are to the imagined contradictions, and people’s reactions are at times strong and overwhelming. I wish I had a transporter to disappear after speaking engagements sometimes. Not because of stage fright, which I don’t really have much of, but because of the “Holy crap it’s a walking talking typing autistic person” response. I’m sure even autistics who don’t show up in quite as glaring contrast to people’s assumptions, know exactly what I mean when I talk about that response, because at times it’s inevitable in being openly autistic and doing public speaking.

Well they offer you money, but money don’t mean much to you
And they feed you with flattery, to get you to show them the things that you do
…
And you’d like to say, “Leave me alone, would you all get away!”
And you wish you were safely at home
And you wish that somebody would stand up and say
“He’s a boy, a boy who can’t talk, just a boy, a boy who can’t talk”

— Tony Carey, “Pink World”, also a good explanation why there are certain things I won’t display publicly anymore (flattery, if anyone wonders, tastes like saccharine-coated poison to me)

I wouldn’t mind so much, I think, if this were a world in which there were not the ableist assumptions that lead to the backhanded compliment of “Wow you’re so amazing… for an autistic.” If everyone knew that there is no contradiction at all in being autistic, and writing good speeches, and, uh, doing all those other things I do. If everyone knew, even, that lives like mine existed, lives in which abilities that were there or seemed to be there before are not here anymore, or that abilities fluctuated seemingly at random, and in which I’m okay with that. A lot of things.

And yes, I’m very aware that in this particular day and age, if I put myself on display, I’m asking for it. But I wish there were some other way, and sometimes I wish that society would change just a little bit faster. What I like most is being in the company of people who are not surprised or overly emotionally awestruck by the apparent contradictions — contradictions that exist entirely in people’s heads — in what I can and can’t do, past and present. There’s a button that says “I am not a puzzle, I am a person.” I wish there was “My abilities are not paradoxes, the only contradiction you see is based in your own assumptions, not in me.” Or something.

My choice to reveal my areas of difficulty online is a conscious one. I am aware that in the present day, this has all the consequences I describe above and many more. I know people who choose not to discuss their areas of difficulty, so they will not have to encounter this kind of thing. Online, they can pass, because anyone with a certain level of writing skill is assumed to have a whole lot of other skills, even if they don’t. I have discussed this with some of them, who will talk in private about things like this, but never in public.

And that’s why I do it, I guess. Because I hope that at some point, some kid like me won’t have to grow up with what I grew up with, or face this world in adulthood that shouts “retard” at them one minute and hails them as a “genius” the next, and flip-flops back and forth faster than a ping-pong match. I hope that at some point, my particular kind of skill pattern won’t be considered weird. And people like me won’t have to deal with a choice between unpleasant hiding and unpleasant kinds of exposure and attention. Where we won’t have to be walking freak shows.

I am hoping that if I am an example of someone like this that people can get used to, then it will be easier for others later on. But every time I see my name used as an example of “this ability combined with that deficit,” I’m ambivalent, it’s uncomfortable. And yet I use others’ names in the same way, others who have voluntarily become examples. This is where I separate emotions from political acts: I know that however bad this feels to me, I’ve still chosen to do it, and these are the consequences.

As much as I dislike aspects of doing this, I would dislike it even more if someone tried to paint me as a fragile being who needed to be shielded from all public discussion. I would find it incredibly manipulative of myself, if I talked about how bad this made me feel, in order to avoid the consequences of what I’ve done. I can’t stand it when other people do things like that, make public political statements and then claim to be too fragile to have to deal with the consequences. So please don’t take what I’m saying as that, it isn’t.

I may react with horribly unpleasant levels of emotion to a topic, but I do not ever want to use that reaction to influence people’s responses in a manipulative way. In fact one time someone insisted that my emotional reaction meant that they had to avoid saying things that upset me, and that I was conveying to them that they should not talk about those things. I argued with that person. I told them that if I didn’t want them to talk about those things, I would tell them, I would not just display a strong emotional reaction as a hint. I told them that I may react strongly but in no way did I want that to make them feel like they’re obligated not to disagree with me.

I don’t like it when others do that kind of thing (“Here’s my opinion, and you shouldn’t contradict it or I’ll get very distraught/ill/etc, but you still have to listen to my opinion, and if you do contradict it I’ll not only be distraught/ill/etc but I’ll go to other people and tell them what a monster you are while claiming to be an infallibly nice person myself, my niceness being the reason that I’m so fragile and you’re so mean, etc”) and I don’t want to do it to anyone. My reactions exist, and I don’t always hide them (although I do believe in the “there’s a time and a place” thing), but they are my reactions, not signals to you to shut up. I know that there are real consequences for saying the things I say, and not always enjoying them doesn’t mean not accepting them in the “unpleasant but inevitable” category.

But I do want to get across that there’s a definite cost in this kind of situation. And not a trivial one.

I hope that this has made sense. This has been one of those posts where there are all kinds of depths and details to what I am thinking, but my writing only shows a pale cursory reflection/summary of those. There is so much more to this subject to cover, but it’s too emotional for me to jump into very far right now. I once, a long time ago, wrote a post on something related to this, and deleted it, never posted it. But, as I said in reply to someone earlier, I’m sometimes more honest than I want to be. And I do think there is a use in mentioning these things, even if only half-formed bits of my thoughts manage to get out. But I do, seriously, hope it makes sense, and hope that the parts of it that go beyond my personal situation are recognizable.

I have a few good friends, some human and some non-human, who don’t regard anything I do as a contradiction or cause for syrupy praise or astonishment. I love them for it. For them, I don’t have to perform, I don’t have to hide, and I don’t have to put up with a choice between the two or the appearance of one or the other. And I’m guessing the same is true in reverse.

May2

Forgetting that something is ongoing

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Edited to add: Both the ongoing severe pain and the absolute worst pain turn out to be trigeminal neuralgia that was misdiagnosed as a migraine. I do have migraines. But not constantly like I was told.

The Smiffy’s Place Blog, in one BADD entry, talks about the question, When Will You Get Better?.

This is the sort of question I get a lot. Not for autism, really. But, in particular, for migraines.

I may have mentioned before on this blog: I’ve had an ongoing migraine now for several years. I didn’t realize that part of it was a migraine until I went to a migraine doctor, but it’s basically an ongoing migraine, sometimes severe, sometimes moderate. (I’d assumed the moderate pain couldn’t be a migraine.)

Right now, as it has been for pretty much since October, it’s in the severe range almost continually. As in, my baseline level of pain is between 5 and 7 on the 1-10 pain scale of someone who’s had severe pain for a lifetime. (Translation: Most people with no experience of severe chronic pain would probably rate it higher, although I already did have to adjust my entire pain scale after I got pain treatment, since pain treatment revealed to me that my previous “1” was really a “3” or “4” at least.) I’m vomiting a lot if I don’t keep taking tons of Dramamine, and sometimes even if I do. I’m having to cut off activities I could do when the pain was at a more moderate level, and the migraine interrupts anything I’m trying to do throughout the day. It causes huge levels of fatigue and clouded thinking, too.

I’m not saying all that to make anyone feel sorry for me, just to give an idea of how much pain I’m in on a regular basis. (And yes, I’ve tried tons of migraine treatments, I don’t really want to hear everyone’s migraine advice. The last migraine prophylactic med I was on actually worked, as in it took my pain down to moderate instead of severe, but it also did a lot of unpleasant and dangerous things to my body, so I had to stop it.)

Anyway, this is something that’s always here. It’s always affecting me. It’s never gone.

What I notice is that unless I broadcast some signal of pain, people seem to forget I’m in any pain at all. If I don’t talk about it, and I don’t grimace or vomit or lie down in a dark room with ice packs on my head, people assume it’s not there. And then they attribute all kinds of things that are pain-related, to other things entirely.

And then when I do show it, it’s “Oh, do you have a headache today?”

And I keep thinking, “Okay, how many times have I explained to you that I’ve always got a headache? If I don’t have a headache, that will be news.”

In So You Know a Dyke with CFS, Carolyn Gage writes:

DO ask me how I am when we get together for an activity. That lets me know that you are willing to be my ally in confronting the challenges I am meeting during the time we are together. I have come to learn that when you don’t ask, it means you don’t want to know. It means that your plan is to grant me the “privilege” of being considered your able-bodied peer for the duration of our activity. In other words, my illness will only be real for you if I bring it up. Experience has taught me that this attitude results in your equating my mentioning of symptoms with my causing those symptoms. And you will oppress me accordingly.

(Emphasis mine.) That seems, to me, to be exactly what is happening. People seem to expect this migraine business to be something that just goes away. Even if they’re told that it’s ongoing, I’m not sure they believe it. So, it’s only real when I mention it or give some indication that it’s going on.

In October, my roommate mentioned, also, that people who don’t have migraines seem to think that since they’re common, they must be mild. She said that a lot of people don’t even believe the degree of pain and other unpleasantness a migraine can cause, let alone that a migraine could last a long time. Others, including especially people who get migraines only temporarily, don’t believe a person could function with a migraine, so would disbelieve this from a totally different angle.

The truth is that if you have something every day, you learn to function better than if you’re hit with it intermittently. Not that I’m doing things as well as I do when the pain is milder, but I’m doing more than I would if this were temporary and could be expected to go away. One time I tried lying in a dark closet for the duration of a migraine and realized after three days that this wouldn’t work. At the moment, I have to lie down several times a day, and I’m probably going to have to go vomit again after I finish writing this, but I also get up and do stuff sometimes. With chronic migraines, the pain fluctuates, it doesn’t stay at total hell level all the time, just mostly-hell level. And with severe pain in general, if it lasts long enough, there are times when it seems to fade out a bit, even when it’s still there as much as before. Plus you develop all kinds of ways of detaching from your body (up to and including, in my case, full-immersion hallucinations and/or total disorientation and/or unconsciousness if the pain gets bad enough; I’ve experienced this with migraines, with the other kind of pain I get, and with post-surgical pain when the hospital screwed up and forgot painkillers).

Or in other words, as Diary of a Goldfish describes in their blog entry for BADD, the sick role doesn’t work for those of us who have one of these supposedly “temporary” things that refuses to go away. I may still be trying for a migraine cure, or at least a migraine “beat it back a fair bit until it’s manageable”, but I can’t put my entire life on hold until I do. Certainly there’s a lot of things I do less now than I would otherwise, but I still do more during a migraine right now than I probably would if I only got one of these a couple times a month.

My thought, with this and so many other things that people don’t notice, is often something like, “I bet if the people who have trouble believing this is ongoing, had to live in my body for one hour, they wouldn’t be able to function. At all.” They’re probably not used to the degree of pain that I’ve been used to as long as I can remember (from things other than migraine). They’re not at all adapted to my perceptual setup, and would probably just collapse in overload. They don’t know how to pace themselves for stamina problems like the kinds I have, and would rapidly end up what staff used to refer to as “fully catatonic”. I have a lifetime of figuring out how to function in this body. They don’t.

But regardless of this, many hold me to standards that would probably be impossible to hold themselves to. And when it comes to migraines, or other things like that, I am pretty sure that what I experience is not “real” to them until I mention it, and then it’s not “real” anymore until the next time I mention it.

I’ve even had medical professionals become skeptical when I talk about not reporting severe pain (that probably is central pain or something similar) for twenty years. Central pain (or other pain like it, since there are neuropathic pains besides that that act the same, I’m just assuming since no nerve damage has been found that it’s probably central pain) tends to be under-reported anyway, because it’s so alien to any form of pain that most people ever experience, and because it’s so often associated with communication trouble. It’s most often reported as debilitation rather than pain. If you’ve had it as long as you can remember, then what? How are you supposed to know? But, at any rate, apparently that pain wasn’t real until I reported it either, and continues to be unreal even if I do report it.

While I was writing this, my case manager walked in the door and said, “Uh… do you have a migraine today?” I told him about this blog entry and said “The day I don’t have a migraine, you’ll be among the first to know.”

I’ve also had staff assume, not just once but many times, that if something wasn’t happening on their shift, it just plain wasn’t happening to me, even if I mentioned it.

I do wonder if the notion of something not going away, makes people uncomfortable. If it’s more than just “forgetting,” but “not wanting to think about”. At any rate, regardless of what intentions are behind it, I do notice that if people are likely to “forget” that I’m experiencing something, they’re also likely to “forget” the different ways I might need to do things, the access problems, and so forth. And to become almost irritated, if I bring those things up, as if, yes, mentioning them is causing them.

Apr29

Lessons on Inclusion from a Segregated School, Version 2 (from memory, not an exact reproduction of the first one)

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I keep hearing that some disabled people are just too hard to include in regular society. That we have behavior that can’t be tolerated, that nobody will ever put up with the way we look, that there’s nothing we could possibly do, and a lot of other things like that. And I think back to one of the segregated schools I attended.

This one, unlike the others, was not on the grounds of an institution, although it might as well have been. The school did run several group homes, and many students lived in the group homes and were driven to school from there. Many of the other students were on strict behavior programs at home, went to school, and only left the house for segregated day programs. As far as I can tell, the main difference between the life lived by most students there, and an institution, was the distances involved between one part of the institution and another, which were traveled by car instead of on foot. We were still separated from the rest of society the vast majority of the time.

The people at this school were everyone the district didn’t want in its regular schools, as far as I could tell, although there weren’t a lot of purely physically disabled kids there. I don’t know where they all went, since most of them weren’t at regular schools either, but I suspect it had something to do with their insistence on not being lumped in with the “retards”, that over time there was probably a new rule made or something that purely physically disabled (or passing as purely physically disabled) kids had their own schools so they wouldn’t have to be in with the rest of us.

The rest of us included people who as far as I can tell, were everyone else the school system didn’t want in their mainstream classrooms. There were kids there from the psych system. There were kids who were extreme bullies, and who probably bullied normal kids, since bullying disabled kids rarely gets you recognized as doing anything wrong enough to be sent to school with them. There were kids who often got in trouble with the law. There were kids who sexually assaulted other kids. There were kids who were autistic. There were kids who were diagnosed with mental retardation. There were a couple kids with cerebral palsy, and diagnoses of other things too, since without those other diagnoses they’d probably have gone to some school for physically disabled kids. There were kids with dyslexia and other learning disabilities. There was one kid with narcolepsy. There were kids with Tourette’s or OCD.

It was basically anyone who wasn’t wanted anywhere else. And this school — which was a horrible school, by the way, with almost no good points to it and a lot of illegal things going on, lest I later paint what sounds like a good picture of it — supposedly specialized in the really difficult cases.

I notice something peculiar about this: We were supposedly too difficult for mainstream kids to put up with, but we were somehow not supposed to be too difficult to put up with each other. This is one of the strangest things about segregation to me. Somehow mainstream kids don’t have to put up with us, but we, who supposedly have less people skills, are supposed to figure out how to put up with each other.

The thing is, we did. We had no real choice. We did not always come up with particularly constructive ways to put up with each other, but we did have to come up with ways, nonetheless, because there was no escaping. And I don’t think that non-disabled kids always put up with each other in constructive ways, either, but they do put up with each other. This is not saying we all liked each other, or were all friends, because we weren’t. But we at least tolerated each other, which was more than mainstream kids were ever asked to do for us.

Anyone who thinks this was some kind of utopia for disabled kids, where differences don’t matter, wasn’t there. I was sexually assaulted several times by other students, and then blamed by the teachers for not picking up on the cues that it was about to happen. One time the teachers even found it hilarious and wouldn’t stop laughing about it. Many of the kids teased the kids they called the “retards” or the “special kids”. And while there were a couple teachers who really tried to make a crappy environment work for us, many of the teachers were bigger bullies than all the kids put together, and came up with creative, and probably illegal, punishments for minor infractions. Low expectations were normal there.

But at the same time, something became very clear to me: Unless disabled kids, including kids labeled “socially disabled,” are much, much more innately capable of putting up with each other than non-disabled kids are, then non-disabled kids could have put up with every last one of us, too. If they’d had to. If they hadn’t been encouraged towards a sense of entitlement that they don’t deserve, an entitlement to a life and an education totally free of the ones they consider undesirable.

Because if we were so “distracting” to be in a classroom with, why would we, who were said to be so much more distractable than usual in the first place, have been put in classrooms with each other? If we were so socially incapable, then why would we be expected to do what the “socially skilled” normal kids could not, and find ways of dealing with each other’s presence?

This, of course, extends well beyond kids, and well beyond school (I view school as flawed anyway, for everyone, so I’m not saying much positive about any schools here, just to be clear).

When I got out, I was surprised to see people walking down the street who did not suddenly scream or tic or rock. I was out of place. Many times, other weird people, many of whom had been in the system, would walk up to me, recognizing the look I guess, and start talking, and I’d have a sense of normalcy for awhile. But a lot of the time it was culture shock. Groups of non-disabled teenagers frequently ran up to me and tried to “trick” the “retard”, which is apparently evidence of their very high degree of social skill, or something. I was relieved whenever I saw someone who, by their walk or way of reacting to things or actions, was clearly not a standard-issue person.

But most people either saw me as a walking target or a person to avoid or patronize. The walking target part wasn’t new, but people didn’t really get a chance to avoid each other for being in special ed. We’d have had to have avoided ourselves, for starters, and there was nowhere to go where you could avoid meeting other disabled people. Since the only non-disabled people there were teachers, and a lot of the teachers there weren’t very nice, you wouldn’t even necessarily want to be around solely non-disabled people. Patronizing there came mainly from teachers, not students, although some students of course picked up patronizing from the teachers.

But what I keep coming back to, was we were never allowed a sense of entitlement to not being around each other. That sense of entitlement allows some non-disabled people to view our presence in their world as an optional obstruction to the way things normally are, instead of a part of the way things normally are that they’d better get used to. We had to make concessions for each other all the time, we even had to make concessions to non-disabled people by attending these horrific schools, but non-disabled people were never forced to make any concessions for us, so they view that lack of concessions as something they’re entitled to.

So do some disabled people, I have noticed. Physically disabled people don’t seem to want us in their own segregated schools, and I’ve seen many speak with more horror at being “lumped in with the retarded kids” than at being forcibly segregated in the first place. And many disabled adults, of all kinds, only want some kinds of disabled people, if any, around them.

I’ve talked to autistic adults who manage in the non-autistic work world every day, most of whom were never forcibly segregated, who claim they couldn’t bear being around autistic people who make loud, involuntary noises so all such people just shouldn’t be allowed around them. Now I’ve got as much auditory sensitivity as anyone, but I’m also a loud, involuntary noise-maker at times. Moreover, I was in a school full of autistic people, some of whom had too many noise sensitivities to stand a standard-issue workplace, and somehow we all survived having people there (who were sometimes us, of course, since noise sensitivities and making loud noises are not mutually exclusive) who were out in the courtyard screaming every few minutes, or who squealed and ticced loudly. Not that this prevents me from trying to stop screaming, since I’m aware of noise sensitivities, but I’m under no illusion that people like me are welcome a lot of places until we do figure that one out, and we’re usually the first ones to get thrown out instead of anyone thinking that both sets of a people have a right to be in any particular place and there needs to be compromise.

Likewise, I’ve seen horrible fights break out between people who have particular receptive language problems and people who have particular expressive language problems, both expecting the other to totally capitulate to their needs or else. I kept thinking, this is like listening to a bunch of signing Deaf people take offense to the idea of using interpreters around blind people while blind people insisted on signing Deaf people speaking, while a bunch of deafblind people (like, in this analogy, me, since I don’t always write in ways people can understand and can’t always understand some people’s styles of writing) sat around wondering why people couldn’t just quit taking offense at everyone else’s areas of difficulty and start looking for solutions.

Meanwhile, people with assorted receptive language problems were telling people with assorted expressive language problems to “try harder.” People with assorted expressive language problems were becoming offended and insulted at even an honest description of what reading their writing was like for people who had serious trouble reading it, and insisting that other people must make the effort no matter the cost. People with receptive language problems were in turn becoming offended and insulted at equally honest descriptions of what trying to write in standard English was like for those who had trouble doing it, and insisting that other people must make the effort no matter the cost. The idea of interpreters was rejected by nearly everyone as simply impossible, mainly apparently so they could go back to fighting. I can imagine a lot of problems happening at my school, but not that one.

We didn’t have the option of running off in a huff to some other school. Pretty much, that was the last stop for people schools didn’t want. Any further from that and we’d be in the kind of institutions that have a school somewhere on the grounds, rather than the ‘distributed institution’ that most of us lived in (nominally ‘in the community’, but, only nominally). And the kids weren’t the ones who made those decisions, anyway. Therefore, we had to learn to at bare minimum put up with each other, one way or another. An attitude that I find way too lacking out here, because most people have the “out” of saying “No [insert kind of person here] allowed.”

It seems to me, sometimes, that there were things more “inclusive” about the segregated environments I was in, than the supposedly-integrated ones I encounter in the outside world. There’s this sense, out here, that non-disabled people, and maybe a few of the elite among disabled people, own the world and the rest of us are intruders in it, who must be on our best manners at all times to keep from getting tossed out. Meanwhile, non-disabled people can often get away with, well actually murder is one thing they do often get away with towards us, but even lesser things too like severe bullying… and somehow we’re still the invasive and intrusive ones, because it’s their world, not ours. (This is why I refuse to refer to integration as inclusion.)

So I’ll close with a quote from Chris deBurgh’s “The Getaway”:

Das ist auch unsere Welt
This is our world too
Oui c’est notre monde aussi

Mar28

Why meetings are a problem.

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I’m writing this Tuesday night, although I will probably post it Wednesday morning given how many posts I’ve made close together today. So “today” = March 28, and “tomorrow” = March 29.

I had a meeting earlier today.

As far as I can tell, I was told things like, “If you go with the fandle norblit plan, then this would galleb the noodwer sifdong in the pollafied tridge. But you’d have to do a feeping drudsy mardenforig if you want diens to rowify. And werin on zabfor invilsiddy porren the fandle norblit again so you can get the mardenforig set up.”

Of course, there were actual English words in there. I could even probably have repeated the sounds of them at the time. I could not make them lodge into anything remotely tangible in my brain. Even when I got the sounds right, they just wouldn’t touch anything. I tried banging them against my brain for awhile and gave up. The same thing happened when I tried to read the papers they had given me at the last meeting.

It’s going to be interesting when whoever is involved in this, finally notices exactly why it takes me so long to do anything official. It’s because I end up either having no clue what anyone is talking about, no clue how to talk about what I need to talk about, or both at once for even more fun. The world moves much faster than is possible to keep up with, and sometimes its regulations and such insist that I move along with it, faster than I can actually go.

Get me reading or writing about human rights, or autistic people, or certain aspects of myself, and you will find someone who is, at times, incredibly articulate and literate. Get me off of those few topics, or get me into the wrong approaches to these topics, and you’ll get someone who can’t say or understand a word.

I have a meeting tomorrow. It’s about my hands. Which are not, as far as the tests go, experiencing carpal or ulnar tunnel, or if they are, it’s too mild to show up on the tests. We’ve of course now learned that I’ve got a lot of things that would point away from carpal or ulnar tunnel as being the main cause (although I do suspect I’ve got a mild version of one or both of those in addition to whatever else is going on) of pain for me with this RSI stuff, but the hand doctor has cut me and my staff off so much that it’s impossible to get a word in edgewise. Tomorrow he is likely to make some sort of ridiculous pronouncement based on the tests.

Hands are not my best area of understanding. I am not good at communicating every little nuance of pain and other sensations, even when someone is poking at them, especially when someone is poking at them. My hand doctor is someone who believes in rushing patients through appointments so fast you barely know what hit you, and not bothering to listen to anything he doesn’t find important, as far as I can tell. Among the things he didn’t find important last time were my finger that I can’t straighten, which hurts a lot periodically, and which can’t be fixed surgically therefore it’s not even important to him to tell me why I can’t straighten it (it’s not broken or arthritic). This is probably not good for anyone, but is especially bad for an autistic person.

So tomorrow I get to go to another meeting. One in which I may or may not understand a word that’s being said. One in which I may or may not receive some of the ultimate medical insults (I always love how when something isn’t what a doctor expects, many of them blame the patient). One in which I am very likely to, unless this hand doctor changes drastically in his approach and outlook, decide to find a hand doctor willing to spend enough time to look at all possibilities. When you’re dealing medically with an autistic person, it doesn’t matter how verbal we are or seem to be, you can’t just assume that we’ll tell you the most important facts, so you have to do more work, not less. All I know is that I’m not imagining my hands hurting, and I know what my brain can and can’t generate and this version of hand pain is not in the “can” category.

But my brain is only barely even turning towards hands. For me, writing is like trying to catch a thermal: I can choose which but they have to be there. There are no thermals right now leading to the information that will help me out at an appointment with an obnoxious hand surgeon. I can’t even get myself too worried, because I can’t imagine what tomorrow will be like. I just know that with the blankness towards hands in my brain, I’m very likely to be hit out of nowhere if he decides to be too awful. And if meeting with people who wanted to take the time to communicate with me, today, was bad for comprehension…