Category Archives: Shutdown

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.

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”.

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.

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.”

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.

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…

Conveyor belts and time overload

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Sometimes getting information into or out of my head is like a very long conveyor belt. I set a package onto the conveyor belt, and it starts moving. But when it will get there, who knows. There are things I set on that conveyor belt five, ten, even fifteen years ago that haven’t reached their destinations yet.

Yesterday I had a very processing-intensive meeting. Six people including me were present. I could get some responses out, but they were words-in-response-to-words sorts of things. That bypasses some of the conveyor belt phenomenon but with little comprehension involved. Then by the end of the meeting I was starting to articulate thoughts I had at the beginning of the meeting.

Meanwhile, in the midst of a bunch of these conveyor-beltish tendencies, one woman kept saying, “Can we move on? Can we move on now? Can we move on?” Then she would say a lot of things that were essentially gibberish as far as I could tell. I’d get a couple words and the rest of the sentence fell apart. I was doing my best to communicate, and getting praised in fact for these supposedly wonderful cognitive skills I have (that’s the last thing I coherently remember being said, was how obviously intelligent I was based on my typed conversation), while actually drowning under all sorts of words I couldn’t understand.

I’ve never been sure what intelligence is as a concept, nor the lack of it. That’s not an attempt to be politically correct on my part. I just don’t know what it is and get uneasy when it is brought into discussions because it seems to be a very vague and fuzzy concept.

I do know that the cognitive skills I am good at, are either ones that require processing information at a level more basic than non-autistic people can generally process information (like that test I was given that relied entirely on the matching of patterns without having to add layers of abstract meaning to the patterns), or ones where the information can be collected and put together over a long-term period. When processing information is difficult, I need time for all those conveyor belts to reach their destination. Sometimes a lot of time. But they do get to their destination in the end.

I have a very small number of setups that allow the seemingly rapid processing of information in a small number of areas, but it’s actually just other versions of that more basic-level pattern-matching. I used that to get through the meeting.

This morning, I woke up and could not get out of the meeting. All the conveyor belts were jammed and trying to process the information from the meeting. My staff person arrived and I couldn’t type or respond to a lot of information in general. She did something no staff person I remember has ever done (which in retrospect seems surprising), and grabbed one of my pictureboards. Asked me questions. Gave me time to point to answers. Even though a lot of the answers were pointing to “Confused” and “I don’t know,” that worked better than a lot of things would have.

I’m still stuck in a different set of timeframes. It’s like watching all the conveyor belts go at different rates, with a lot of them loaded with information from the meeting because it was given such high priority. And they’re all going pretty slow. The world itself seems to be moving too fast to keep up with. I’m trying not to lash out at bits of it that show how fast they are, because those tend to be living creatures like cats or humans. The instinctive response seems to be “If I lash out maybe they’ll go away and things won’t be so fast anymore.” Trying to counteract instinct with some amount of reasoning.

I am not sure that people who process information in more typical ways ever have to deal with this weird variety of cognitive backlog except during exceptionally stressful events. In my case I lie down and as soon as I relax my brain goes “Oh goody I can process more information that I didn’t before” and I’m bombarded with a bunch of sounds, smells, sights, etc, from earlier in the day (or week, or year, etc), and then I start trying to generate reactions, most of which are of course too late to do anything, many of which take time to get out too, and which confuse people because then the reactions happen at times that have nothing to do with whatever is going on at that time.

Meanwhile of course I might not have enough space in my head to realize how advanced the mental gridlock has become, or what to do about it. I know when I woke up this morning, I was scared, because I could see only the bare outlines of what was happening, and was mainly getting hit over the head with stimuli even in a quiet bedroom. I kept thinking “Will I get back to now?” and “Will my brain come back?” and stuff like that. During the meeting I realized something was happening, but didn’t realize how far out of sync I’d gotten until I’d had time to figure that much out. (All I really perceived after a point was that I was drowning in gibberish and light and angles and stuff. And I remember trying to say “yes” by handing a block to someone and nobody knew what I was doing.)

I’m still on a long lag time with most things. I’m glad I have one reasonably free way of getting information out, about lag times. (Of course even many of the things I’m saying here are things that have been years in getting from thought to words to typing.) Maybe this is one reason the concept of time is so confusing to me.

You Have It So Good

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[this is a repost from my old blog, since several things link to it at my old blog which isn’t showing much sign of coming back soon, other old blog posts should follow eventually]

You Have It So Good is the latest addition to the Autism Information Library on autistics.org.

I have a lot to say about it. A lot of it is stuff I won’t normally say or stuff I’ve never said all at a time before.

Fortunately in an odd way for me, there’s something stereotypical enough about me that I got services after I moved out of my parents’ home. But due to the fact that I was so isolated at the time, most people, even my family, don’t know a lot about what the time in between moving out and getting services was like. And there was quite a stretch of time in between, in which I honestly believed that I needed to go back to a group home because I’d been brainwashed like everyone else into believing that significant levels of assistance only came from institutions. I just had no clue how to get back to one, which is fortunate.

I rented a room that shared a wall with a bigger house. There was a family of people living there. The little boy — homeschooled, therefore nearly always home — tormented animals, including my cat. His mother’s only response? “I can’t make him care.” (She also held the incompatible belief that he was exquisitely sensitive to all suffering because he’d supposedly screamed about blood when someone was cutting down trees.) The neighbors across the street were often threatening the neighbors next door with death and violence, and I was glad that my little add-on attracted so little attention that even the mailman didn’t always know it was there.

I spent most of my days doing — and able to do — very little. Unless you count banging your head on the wall, because I did a lot of that. My epilepsy was uncontrolled and I once found out I’d been having seizures for twenty minutes. I was in a redwood forest in the mountains of California, and there was mold everywhere. This meant a lot of migraines. And not thinking straight. At all.

Meanwhile the professionals in my life were angry because I’d abandoned them and my parents had allowed me to get away with it. Several predicted death and other dire consequences of living outside their clutches.

Sometimes I was able to drag myself outside, where I sat in my driveway and lined up stones or stacked them on top of each other. Then I went back inside. Sat on the bed. Or the floor. I was disoriented a lot of the time. In a two-room apartment. Couldn’t find the kitchen. Or the bathroom. My perceptions got so mangled that it was often a wonder if I could tell the floor from the walls. I fell down a lot.

I also froze in place more and more, and it became harder and harder to get going. Going to the bathroom, in the bathroom? Not always likely. The floor or the front yard got used just as much, and I often had to sit in it because I couldn’t move enough to take care of it. I sat and didn’t move a lot. And sat and rocked a lot. Screaming, head-banging meltdowns were also common.

Meanwhile my neighbor occasionally came by and tried to scare me with stories that the house was haunted. That "The ones you have to worry about are the ones without bodies." Apparently she and her husband wanted the entire house to themselves but couldn’t afford to rent both their house and my add-on. So they’d gaslighted several previous tenants right out of there. One time while I sat in the front yard, their boy walked up to me and said “I hope you’re not crazy like all the other neighbors.” “Crazy” was what it was called when the previous tenants had believed the stories, which his parents denied telling, at least in front of the landlord. Meanwhile, the neighbor offered me lessons in black magic, which I declined.

Then there was food and water. I couldn’t buy or prepare a basic meal. I set a few things on fire trying to operate the stove. If someone gave me step by step prompting on the telephone, all day, I could get at least some food. But not enough. I got thinner and lying down got uncomfortable because of the way my bones poked into things. This prompting wasn’t just “Pour water in the pot, then turn the stove on.” It often started with moving one limb or digit purposefully. A prompt that had to be repeated over and over for me to be able to do it. Repeat for every step and you can see why it took all day. And this isn’t to mention all the times that I couldn’t understand or obey the prompts and started screaming instead. The phone bills were huge and the person at the other end of the line, autistic and physically disabled herself, was running herself into the ground.

There was a lot I didn’t understand how to do. And even things I understood, I couldn’t do because of the rapid interplay of perception and reaction they required. Getting through the day was exhausting, and getting through the day didn’t even mean fully meeting even one of my basic needs.

At the same time all this was going on, I was dealing with the aftermath, both physical and emotional, of years of intensive “treatment”. I’d been off of neuroleptics for five months when I moved out, and the worst part of the withdrawal was over, but I was still regaining some cognitive abilities. Until I realized it was doing me more harm than good, I was still on the super-restricted diet that I’d been pressured into accepting. And to say I had flashbacks of institutions would have implied I’d grasped yet that I was not living in one anymore. Which I hadn’t. I’d barely started making any chinks in the idea that thinking for myself wouldn’t kill me.

And I had a bunch of untreated infections and serious health problems because as usual I couldn’t communicate adequately to describe what was happening to my body.

If this sounds like a disaster, that’s because it was. But it was also a time period when I was discovering how to communicate with other people — how to attach words to the things inside my head in order to bring them outside my head — by typing. I was discovering, odd as it sounds, that I was a worthwhile person who had a place in the world. I was starting to see disability in a political context rather than the tragic, individual, and medical contexts I’d seen it in before. I had to fight every step of the way for this: Every piece of training I had said I was not supposed to think these things. Online, I read parents doing the same things to their children that had been done to me. I cried. A lot.

The computer was the only physical place I felt all that competent. I was learning about communication, and things were finally snapping into place there that had either never snapped into place that way before or been lost a long time ago in one of the so-called regressions. I started writing to pass the time. I wrote about things I was barely beginning to see: That people like me had some value in the world, weren’t just useless throwaways who belonged either locked up somewhere or cured, a lot of the same stuff I write today. I prayed a lot and wrote what I could perceive spiritually before my training could shut off expression.

The reactions to my writing were often horrifying. Today, I am surprised I was able to keep writing. Sometimes, of course, I wasn’t. But often I was. My daily experience became one where I could barely move in most voluntary ways without tremendous amounts of assistance, I was peeing on the floor, unable to eat, unable to speak, unable to get up and get a glass of water for myself, half-starved, barely able to understand my surroundings, “wandering” aimlessly outside, sleeping on a completely random schedule, looking so “non-functional” by ordinary standards that if the wrong person had seen me I’d have been in an institution fast for sheer inability to take care of myself. The local teens, if they saw me, found ways of “messing with” the “retard”. And then I would do the only thing I could do well in an outwardly-visible way — write — and get dismissed. Wholesale. Often viciously. As too “capable” to understand “real” autism.

I was not able, at the time, to write fully about what I perceived then. I tried, but I only got parts, and the parts I got probably confused people. What I perceived was a glaring contrast, so glaring that it was stunning. The contrast was between what the majority of online parents and even many online autistics thought of my life, and what my life actually was. It had been so ingrained into many that political opinions like mine are formed in good times, not in times of extreme hardship, that they had, pardon the language, no fucking clue what kind of person they were looking at and what kind of life I was living. And I wasn’t all that well-equipped to tell them because the communication skills I was developing were still uneven and it took a long time to get from knowledge to fingers, still often does. (That’s why you’re hearing this now instead of six years ago.)

People who had no knowledge of me in person were calling me a liar. They said I wasn’t really autistic. They said that if I really were autistic, I did not really live the kind of life I led. They said that I did not look like I did. They even told me that I could speak, that I had a job, that I had never lived in an institution, that I did not bang my head, that I had never had any of the “therapies” I was criticizing, that I could “take care of myself”. I was often torn between laughter and tears wondering how they would react if they saw me in person, a person who looked and acted like I could have been used as a poster child for the “keep institutions for developmentally disabled people open” movement, one of those supposedly-ridiculous examples of “Would you put someone this low-functioning in a house by herself???” I suppose I also could’ve been used as a poster child for the “cure autism” movement, considering that parents described my daily life or many things much tamer than that when they described futures they were trying to prevent by curing their children.

That was the contrast I lived, and to a large extent still live, although I now have enough services that I can do more than I could before. (Any break in these services and I go back to being able to either understand my surroundings or move but not both and often neither.) That is in fact the contrast many autistic people live. But few experience that contrast more than those of us who find that not only our writing skills, but what we write about, contradicts every stereotype of the sort of person we are in the offline world. Anyone who says “Autism is horrible because this is what my offline life is like, and you people just don’t understand how much misery autism causes me, you must be a bunch of high-functioning aspies if you’re autistic at all” is much more likely to be believed than those of us who may live a near-identical kind of life and continue to assert our right to be who we are. (Not to mention that the diagnosis of Asperger’s syndrome doesn’t mean a person couldn’t live this kind of life.) And many such people will turn around and tell us we’re liars just as fast as cure-oriented parents will, because it’s in their perceived interests to associate “(perceived) level of impairment” with “level of hatred of autism” and “level of acceptance of the status quo”.

I was, in a way, lucky that it was only one area that stood out in contrast to the rest. I can’t drive, work, pass for NT, or speak, and people know there’s something really weird about me when they meet me. That means that when I applied for services, although I have many times encountered resistance and misunderstanding, I qualified almost immediately. I got SSI on my first try. Same for in-home support services and Regional Center services. When I got that last one, I had to fend off people trying to institutionalize me in a level three group home, I now am told I would qualify for an ICF/MR if I didn’t have in-home services. While there’s occasionally question about why I do, and what kind of services I need, there’s very little question that I appear “non-functional” enough to get services. That doesn’t sound like a good thing but in some contexts it’s saved my life.

Note: I as always reject the terms low-functioning and high-functioning, and this isn’t an invitation to call me low-functioning. But many people would and have. That my insight or writing skills (some of the time, on both of those) don’t match the stereotype says more about the stereotype than it does about me or anyone else who’s ever had that label. When parents say their non-speaking children can’t possibly understand something, my main response is “Maybe not, but how do you know?” It’s been my experience that my level of understanding of my surroundings, of the world in general, of myself, or of anything else, is routinely under- or over-estimated even by those closest to me.

Joel Smith doesn’t often pass for NT, but he can drive, work, and sometimes speak. And he’s a self-advocate, no-cure, disability rights sort of person when he writes, not a woe-is-me my-life-is-hell-I’m-the-lowest-functioning-person-on-the-planet we-need-a-cure-for-autism type. All of that works against him in the stereotypes of many. This kind of stereotyping has got to stop. It may not sound like sophisticated disability theory, but these are people’s lives we’re talking about. He’s not the only one. The prevailing view of how abilities fit together, as well as of how abilities are connected to political views, has to change. Or people will die, and in fact I am certain that many people are already dead over exactly this kind of thing.

People need to stop spreading these stereotypes. That includes autistic people who think that by questioning our diagnostic credibility because of our political views, they will come out ahead services-wise. We’re all in this survival thing together and it’s not okay to sacrifice others that way.

I’m reminded of a post from way back in the depths of time, and apologies for digging this up but it describes the situation so well in the words of one of the most well-known anti-cure autistic self-advocates out there:

You know where this is leading to? I’m going to die here. Maybe soon, if this throat infection overwhelms what’s left of my immune system and turns into pneumonia. Maybe a little later, if I can’t shop or forget to eat for a few days too long. Maybe alone at home, if I have another bizarre accident that’s more serious than the ones I’ve had so far; or maybe on the streets, if my “weird” appearance attracts more violence of the sort I’ve been a target of all my life. Don’t think that just because I’m not mentally retarded, I’m any less affected by autism than your brother is.

That’s from a really old Usenet post by Jim Sinclair that can be found by clicking here. I can only imagine that xe must have been in a similar situation to the one that too many of us have experienced — that contrast again. I don’t agree with some of the statements made, particularly the assumptions about IQ, but I can imagine too well the situation that prompted that post.

It is also this situation that Laura Tisoncik wrote about in Why I Am Angry, saying:

I hate the parent-professional axis that rips people to shreds then drops them into oblivion when they hit adulthood. I hate anything and everything that pays lip service to autism services but with with all its resources couldn’t do what I could do with next to nothing. I hate autism societies that have no use or place for autistics except as an occasional token to perform as freak shows at conferences. I hate “child centered” organizations that leave adult children to eat coffee grounds when there are no more parents to serve. I hate a system that mourns for t
he purgatory of the parent but doesn’t even give a damn about the hell of the autistic.

If anyone wonders, I’m the “19-year-old friend” in that article and she’s the one who ran herself into the ground making sure I could survive while she was barely getting by herself. Anyone who thinks being autistic means lacking compassion doesn’t know her.

Sometimes, while barely (if at all) able to perceive my surroundings, move, perceive the passage of time, react, or some combination of those things, I laugh in my head at the contrast between my life and the way people online pretend to themselves that my life goes. It seems bizarre — and I can have a downright twisted sense of humor — that so many people think they know what my life is or has been like. Sometimes, though, I scream or cry, because I know what the cost of their misperceptions is to people like me, and it’s not a price I want me or anyone else to have to pay. Too many of us pay some or all of it every day.

It has to stop. One ability is not another ability, no matter how closely related (or identical) they seem in abstract stereotype-land. Period. The appearance of an ability does not mean the ability is there. Period. One ability some of the time is not one ability all of the time. Period. Political views on curation, institutions, or anything else like that, do not indicate kind or level of ability in any particular area. Period. All of those are true when inverted, too, appearance of obliviousness doesn’t mean obliviousness for example. Those of us who know this will not shut up about it, and people who don’t had better learn what’s at stake when they trivialize what is happening to us.