Warning, this post discusses crap. Literally, crap. But it’s not very graphic about the crap itself. I’m going to split the post anyway so that those who do not want to listen to me be excited that I can now (as opposed to in the past) detect the warning signs of impacted stools before they happen.
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.
I have a book. I have to confess, I’ve never actually read the book. I’ve tried, but the language in it is difficult for me to understand. This does not prevent me from loving the cover of the book. The book is pictured here, but for those who can’t read it from the picture, it says:
She didn’t write it. (But if it’s clear she did the deed…) She wrote it, but she shouldn’t have. (It’s political, sexual, masculine, feminist.) She wrote it, but look what she wrote about. (The bedroom, the kitchen,her family. Other women!) She wrote it, but she wrote only one of it. (“Jane Eyre. Poor dear, that’s all she ever …”) She wrote it, but she isn’t really an artist, and it isn’t really art. (It’s a thriller, a romance, a children’s book. It’s sci fi!) She wrote it, but she had help. (Robert Browning, Branwell Brontë. Her own “masculine side.”) She wrote it, but she’s an anomaly. (Woolf. With Leonard’s help…) She wrote it BUT…
And the title of the book is How to Suppress Women’s Writing by Joanna Russ.
Not having managed to understand more of the book than the cover, I’m not going to comment extensively on the book. But for this post, I’m going to concentrate on the ways I see my writing, and other people’s writing, suppressed constantly, before it even gets to all those “buts”. The “She didn’t write it” part seems to be where a lot of people get stuck with us.
She didn’t write it, because someone was touching her when she “wrote” it.
This is the standard argument against facilitated communication. If someone touches us to help us write things, then obviously it is the person touching us who wrote them.
She didn’t write it, because she wasn’t looking at the keyboard.
See my last post for in-depth information on that myth.
She didn’t write it, because her speech sounds different from her writing.
People often assume that speech and writing should be congruous, and that if writing is somehow more articulate than speech, or contradicts what is said in speech, then it is the writing that is suspect. Speech nearly always trumps writing in what is believed of us. So, if we have speech that goes on autopilot while we write, or if we say the opposite of what we write, it’s our speech that’s believed.
She didn’t write it, because she was just being exploited.
This is one I get a lot, especially in the offline world, especially if I’m saying something simultaneously with someone who gives off a lot less of an air of cognitive impairment than I apparently do. What happens is, while people may accept that I am doing the mechanical act of writing, the assumption is that I didn’t come up with any of the ideas. I got all the ideas from another person, who is exploiting me for their own uses. The interesting thing about this one is that I can actually be the one coming up with some of the ideas, but the other person gets blamed for putting these same ideas into my head.
So, none of my ideas are really my own, they’re just other people’s, exploiting me, supposedly. That’s how the theory goes. I am just the poor innocent pawn of these evil nasty exploiters. And I’m supposed to feel protected by this rather than insulted???
She didn’t write it, because… just look at her!
I don’t quite get this one, but I’ve seen it a lot. Apparently only people who look a certain way can write. Especially, people who look like we might be cognitively disabled, particularly severely cognitively disabled, can’t write, apparently. Not that I’m totally sure what that looks like, but I know I’ve been told that I look like it. So, all you have to do is look at us, and you know, that we didn’t really write what we wrote. Because people who look like us can’t write. End of story, no need for proof or anything.
She didn’t write it, because she can’t be educated enough to write like that.
There’s two assumptions in this. One, that all people of certain sorts didn’t get an education. That one isn’t true. Two, that all people get educated in the same way. That also isn’t true. Donna Williams had a really scattered education until adulthood, and she writes books. Other auties speak of being integrated in regular education even when they didn’t show standard signs of comprehension. And many of us learn in non-standard ways.
She didn’t write it, because she has a mental age of 18 months.
Being able to score well on an IQ test, and being able to write, are two different things. I know of many eloquent writers who scored anywhere from slightly low to very low on IQ tests. I know of several accomplished university students who only discovered they had low IQ scores after they had already gotten advanced degrees. The notion of “mental age” is a meaningless abstraction of the ability to do IQ tests in a certain way.
She didn’t write it, because she writes better than I can, but she’s a retard.
I’m using the offensive word ‘retard’ in here for a reason. It’s an appropriately offensive name for an appropriately offensive sociological category a lot of people get put into. I don’t happen to believe that anyone matches the thought that is in people’s head when they say ‘retard’, no matter how they do on IQ tests. But it is a thought they have in their heads, and it comes into play a lot in these situations. If a so-called ‘retard’ does better than they do at something, that throws their whole mental construct of the world off. So it’s easier to say that we are not really writing. But, no matter how many people think retard at us, it doesn’t mean that some of us can’t be more eloquent writers than some non-disabled people.
She uses an interpreter, so the interpreter is really the person doing the talking.
This happens to me a lot, because I use a cognitive interpreter. That means, someone who is intimately aware of my body language and use of language, as well as my background, who can take a posture and a word or two and elaborate it into what I really mean. I can tell the person at any time that they’ve gotten it wrong, but having such an interpreter can be vital to a communication process because of my trouble with word-finding and other people’s trouble with reading the cues I give off.
Of course, the job of interpreting for me also has a problem attached to it: Quite often the things that I am saying with my body language are things that people want to ignore, as much as possible. A good interpreter will be able to see those and elaborate on them. Like the time my interpreter walked into the room and saw me huddled into a corner terrified of the two staff who were trying to talk me into something, and who told them exactly why I seemed cooperative. They wanted her to leave the room, convinced she was putting words in my mouth (or at least as she said things they didn’t want to hear), even as I said “No, she’s right, she’s absolutely right, let her stay.”
There have even been times when people saw the interpreter, who told them rightly what was happening in my head underneath the appearance of passivity, as a threat, and insisted that I was just fine until the interpreter came in. If I get angry at that, my anger is a sign of the interpreter’s “disruptive” presence, and they try to get the interpreter to leave so they can badger me into submission in peace, or something.
Another problem is the invisibility of my body language and other subtle signals to most non-autistic people. Because they can’t see me as having body language, I am assumed to have none, and the interpreter is assumed to be pulling interpretations out of thin air. Rather than, the interpreter can see what signals I send and is correctly interpreting them. Obviously, if particular non-autistic people can’t see my body language, then nobody can. Or something.
At any rate, when I use an interpreter, what the interpreter says is often not believed, even though the interpreter is often telling them exactly what I am thinking, and even though I always tell the interpreter if she’s getting something wrong.
* * * * * Anyway, I wrote this as an outgrowth of one of the comments on my last post. Someone had asked me, “Why is it that people don’t listen to us about things like how we type?” I am pretty sure the answer lies in the above: They don’t think that we have anything to say, and they don’t think that we actually wrote anything, therefore there’s no way we could have written anything worth listening to, at that.
Over and over, I’ve seen people say that you can tell facilitated communication is not real, very easily, if the typist is not looking at the keyboard. The following quote from the Religious Tolerance website illustrates typical attitudes towards this:
There is one condition in which it is obvious to even an untrained observer that the person with autism is not doing the communicating during a FC session. This is when they are staring at the ceiling or directly away from the keyboard.
If you attempt to type with a single finger, you will only find the correct key reliably if you can actually see the key that you are aiming at. It is common knowledge that if you stare at the ceiling when typing with one finger, you will normally miss most of the characters. On a typical PC keyboard; you will typically be offset by one or two keys on the keyboard. This is true even for people who are skilled typers.
Most “skilled typers” are touch-typists. Most touch-typists do not gain their ability to touch-type overnight. I know this because I am an extremely skilled touch-typist. When you see beginning touch-typists, they will be staring at their hands unless prevented from doing so. It took me years of dedicated practice to become as proficient as I am at touch-typing (by which I mean as fast as I am).
Touch-typists are trained in a very specific method of finding keys. We are trained to use a specific set of key positions, called the “home row,” and use that as a reference point. Many touch-typists don’t even know the layout of the keyboard in their heads, they just know it in their fingers in reference to the “home row”, and do not even know the distances between the keys if using just one finger. To expect a ten-finger touch-typist to convert to one-finger typing without looking at the keyboard is usually expecting too much. A few people, including me, can do it on their first try, but not a lot. Like ten-finger touch-typing, one-fingered typing is a skill that has to be learned, it isn’t just there from the beginning, either one cannot be converted into the other.
I have spoken with many autistic people who, like me, can type one-fingered without looking. One of them recently even expressed surprise that people find this a difficult skill, or that people would believe it impossible. Morton Gernsbacher states in one of her training videos that her son, who types independently, glances at the letterboard a few times to get a feel for the size of it, and then looks away while pointing one-fingered at it with great proficiency.
Then take a look at the Religious Tolerance folks. They had someone try to type the words “facilitated communication” without looking, with one finger, and they could not do it. This was proof to them that it was impossible, and that therefore, if a facilitator was looking at the keyboard, and a typer was looking away, it was the facilitator who was really typing the words.
The latest addition to the Getting the Truth Out website covers this topic, including a video of the author of the website staring at the ceiling while typing a sentence with only one error.
As is pointed out there, it’s very interesting that part of the reasoning behind this seems to be “If normal people couldn’t do this, you people couldn’t possibly.”
That is the same reasoning that prevented researchers from finding the stuff that Michelle Dawson, Laurent Mottron, and others at their laboratory found, about perceptual strengths in autistic people. People had been too busy looking for ways to explain autistic people’s strengths in terms of what we are not (according to them) good at, to look at the opposite possibility. The notion that there could be anything about autistic people that involved being better at something than typical people tend to be, without being the result of a “deficit” in comparison to non-autistic people, just seems too confusing for a lot of the so-called experts in the field.
This is not to say, that if we really were just plain lacking some particular capacity, that we would be of any less value. I do not believe that. But I find it very interesting that many of the ways disabled people are judged in general, seem to contain the assumption that our only difference from non-disabled people is that we can do less than they can do, that if they do something badly then we could never even dream of doing it, and that anything we do happen to be good at is merely a “compensation” for lacking something else.
When I was first diagnosed, I was described as having “idiot-savant tendencies” because I had abilities that in any non-autistic person would just be considered skills or intelligence. This is, to me, another manifestation of the same problem. We are “idiots”, therefore anything we’re even standard-level good at is “idiot-savant” or “splinter skills”, supposedly out of the ordinary for people like us. I have seen similar things happen to people labeled with mental retardation, whose intelligence or other abilities are usually written off as meaningless or non-existent because they’re non-standard or displayed in non-standard ways.
So, yes, people insisting that their inability to do something proves our inability to do the same thing, might want to take note: Just because most non-autistic people can’t do something, doesn’t mean autistic people can’t do it. You might type something like “Edkd yd rsdu,” but we might type “This is easy.”
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.
In going through the numerous and interesting entries for Blogging Against Disablism Day, I’ve read a lot of posts that say, “We need people to see past the disability.” People name different things that need to be “seen past”: Wheelchairs, white canes, flapping hands, body or facial shape, etc. Apparently, what is “beyond” these things is the real person.
I’ll start by saying, I know what it is they mean by this, and I don’t need it explained to me. They mean that some people focus in on some attribute, and then sort of cover over the rest of you with the things they think that attribute means, rather than seeing you as a person.
It’s not as if I don’t encounter this on a regular basis. I use a wheelchair. I can’t use speech to communicate, which becomes obvious if you either know the significance of my communication boards or try to talk to me. I move and react to my surroundings in a way that’s distinctly atypical, in fact so atypical that many people seem to think I am not reacting to or understanding my surroundings at all. (That includes hand-flapping and other things like that.) I have a facial and body shape that, combined with these other things, subtly (sometimes not-so-subtly, as in I get remarks, but often I’m not even sure people realize they’re taking it into account) influences people’s perception of me. So I know very well what it’s like for people to not treat me like a person, on the basis of these things. And it’s definitely rare that people see me for who, and what, I am.
However, my wish is not for people to look past those attributes of me. Because it is not really those attributes of me that cause them to form all their stereotyped and mistaken opinions of me. And because, the term “looking past them,” even as a shorthand, turns these things into something undesirable, something not to be looked at.
I want people to be able to look at me, and see a person, and see all those other attributes and not have to look “past” them or minimize them in order to see me as a person. I want people to be able to see beauty in flapping hands. Not otherworldly, ethereal beauty attributed by someone going the other direction and putting us on a pedestal, just everyday ordinary beauty.
I don’t want people to have to look past anything. I mean, how insulted would most women be by “I look past the fact that you’re female and see that you’re a person”?
I want people to look straight at what they’re looking at, including all the things they supposedly have to look past, and like what they see instead of constructing all sorts of bizarre theories in their head about it, instead of being repulsed or frightened by it, and instead of concentrating on “looking past” certain aspects. If they have to look past those attributes in order to see us, they aren’t ever going to see us for who we are. They’re just going to see another substitute for who we are, little better than the first.
As long as people still have to “look past” things to see us, they’re never really going to see us. It’s the stereotypes they need to ditch, not the aspects of our appearance that they attach to those stereotypes. It may sound like only a semantic difference, but it’s more than that.
It’s Blogging Against Disablism Day. This is my entry. There may be more, but this is my first.
I once attended a segregated gifted program (yes, I’ve attended both gifted and special ed programs, and been considered both gifted and a writeoff at different times, get used to it, both are to me illusions). The kids in the program had often not been accepted at their own schools, and the program was a chance for them to be popular for the first time in their lives.
Because they had never been popular before, many thought they were morally superior to the popular kids at their own schools. They thought since they had been bullied, that they could not bully. Even as they bullied those of us who were “different” in other ways, such as, for instance, autistic people or people with speech impediments. Even I, who was very conspicuously different, wasn’t always the designated “omega”, although I was always close.
Even years after the program ended, many of the same people insisted that they never saw a single person being excluded, shunned, or bullied at the program. I remembered many specific people this had happened to, and described the incidents. “I never saw anything like that there,” was the reply I heard most often, even from people who had engaged in it. They painted the experience as a utopian “coming home” experience, devoid of all the discrimination that the rest of the world had (while meanwhile most students selected for the program were well-off and white… uh… yeah).
From this background, I had been aware, before really encountering the disability community, that people who have been the objects of discrimination or oppression, often view themselves as categorically different from those on the other side of it, and believe themselves to be incapable of doing the same things. While at the same time, doing all the same things, when given half the chance to be powerful and popular. I had also been aware that in order to defend a “coming home” experience, a lot, even physical violence, could be swept under the carpet to preserve a utopian image.
Of the disability community, Cal Montgomery writes:
Even within the disability community, even within the communities that work on disability rights, various subgroups adopt a strategy of tinkering with meritocracy so that the “right” abilities are rewarded and others treated as irrelevant.
A wheelchair user tells me that public transit does not need to be accessible to autistic people. She says that people should not be denied opportunity on the basis of physical ability, but that those with cognitive impairments should be under 24-hour-a-day supervision and control in special institutions built for us. An autistic tells me that public buildings do not need to be accessible to wheelchair users. She says that people should not be denied opportunity on the basis of cognitive ability, but that those with physical impairments should be under 24-hour-a-day medical care in special institutions built for us. And while we’re fighting this one out in the disability communities and in the larger society, known barriers remain in place, barrier removal is treated as a handout and an unfair advantage rather than a just response to entrenched disadvantage, and I indulge in the guilty pleasure of imagining finding a group of like-minded, like-bodied people and seceding from disability rights. Wouldn’t be too many of us: we’d be leaving a whole lot of people out. But we’d be the insiders for once, not the outsiders; and wouldn’t it be great?
That is from Harry Potter and the Allure of Separatism. It’s also one of the most concise descriptions I have heard of the rampant ableism in the disability community.
Within the online autistic community alone, there is a lot of acceptance of standard-issue barriers, and standard-issue prejudice, against physically disabled people as well as people labeled mentally ill or mentally retarded. Many people want only to win acceptance for autistic people, and only some autistic people at that. As such, things like mental institutions, developmental institutions, nursing homes, IQ testing, group homes, standard psychiatric practice, forced segregation in education, beliefs about “quality of life”, and other things of that nature are pretty much unquestioned except when they might have impacted the autistics who regard themselves as “high functioning”. There are, of course, many exceptions, but that does seem to be the overall view of the overall community: “Change as little as possible, just enough to make ourselves fit, and then stop there.”
Meanwhile, because autistics have been excluded and oppressed and discriminated against, there is a lot of resistance to the belief that we, too, are capable of that. All the traits involved in that kind of thing become neurological traits of non-autistic people only. We’re supposedly constitutionally incapable of the kind of ableism and exclusion we ourselves have faced. And yet it happens so often in the autistic community that it should be obvious by now that we are not, that we are no different than those “gifted” kids who were insisting they never did these things.
What does it feel like to be prejudiced, oppressive, and unfair? It feels totally normal. It feels like nothing other than everyday life. It does not feel like going around feeling a certain way all the time. It feels like anything else feels.
A black woman activist, her name lost to history, writing in the United States over a century ago said, “All power seems natural to those who hold it.” This is an astounding observation. This means that once you have power in your grasp it seems so natural, so normal, so “the way it should be” that you don’t even realize it’s there.
— Dave Hingsburger, Power Tools
I have never experienced the massive “coming home” experience that many people report in many settings. I’ve never experienced it in the disability community, the gay community, the autistic community, the mad pride movement, or anything like that. I have never had the sense, even when respected by a group of people, that I really quite belong there, in the social sense of belonging.
But I’ve experienced similar things with individual people. And I can imagine what it must be like to go from being treated like crap, to experiencing this sense of “People like me, people care about me, these people make sense to me, I may even be popular around here, and respected, and wow this has never happened to me before,” and so forth.
I can also imagine what it must feel like to have that threatened. Even if it’s not really threatened, exactly, but just seems like it’s threatened. “Things could go back to how they were. I wouldn’t be able to stand that. I like how things are now.”
And I sometimes think the hostility to self-examination in these communities comes from that. The notion, that thinking this community, whichever community, is less than perfect, might bring everything important in our lives crashing down around us. It might destroy this community, and then where would we be?
This is not to say that all criticism, or all accusations of ableism, are accurate. They’re not necessarily. But nor is all criticism, or all accusations of ableism, mere “negativity” that spoils this (whichever) amazing and wonderful community.
The reinforcement of ableism, prejudice, oppression… can take the form of “Things are fine the way they are. Your complaining spoils the atmosphere, and must be mean-spirited in nature, because I am happy here, and the problems only start when you start complaining. You’re just too bitter to see how wonderful things are.”
What this doesn’t take into account, is the possible experience of the person doing the complaining.
So a thought-experiment: Imagine that you are some kind of person normally called a Barnard.
Now imagine that you go into a community of people, of whom Barnards are supposed to be one subset.
And from the moment you arrive, there’s people talking all about Barnards. All the time. And you hear things like this, in conversations, online and offline, constantly, daily, in whatever community you’re in:
“We’re real people. We’re not like Barnards.”
“You know… I really feel sorry for Barnards. They have to live their whole lives in institutions. I mean, we don’t need institutions, but Barnards do.”
“She was being so Barnard about the whole thing, you know.”
“I used to teach a class full of Barnards once. I know all about Barnards.”
“Barnards are pure and incredibly spiritually sensitive. They’re not like us ordinary mortals.”
“You know… us, we can think, but with Barnards… there’s not really a lot there. Those Barnards, I wouldn’t want to be like that. At all. Scares me to death.”
“Look, I saw a picture of him. He’s a Barnard. There’s no mistaking he’s a Barnard. Just look at his face. My dad worked in institutions with people who looked just like him. He couldn’t possibly have written that. Barnards can’t write. I know this. I’ve worked with Barnards too when I went to work with my dad.”
“Calling the problems Barnards have participating in our events an accessibility issue is going too far. We may have accessibility issues, but Barnards have more serious problems, and we can’t do anything about that. There’s no possible way to remove the barriers they’re facing, in fact the problem isn’t barriers, it’s the fact that they’re Barnards.”
“You know, I can understand why she killed her son. I mean, I wouldn’t understand it if her son was like us. But he wasn’t. He was a Barnard. Do you have any idea that amount of stress having a Barnard in the family causes? Have you ever taken care of a Barnard?”
“We call ourselves the Everything-But-Barnard Community. I mean, we don’t phrase it that way, we call it the Barnes/Barton Community, so that’s not exclusionary. I mean, Barnards couldn’t even participate, so we’re just trying to be fair in not naming them.”
“We [inclusive of you, a Barnard] are Barnes/Bartons, not Barnards.”
“I think it’s really important that we prove that we’re not Barnards.”
And, you’re bombarded with this. Absolutely bombarded. And you’re a Barnard. So you’re not very comfortable. And it’s not random emotional discomfort, it’s more the little acts of degradation that Cal Montgomery enumerates in Project Cleigh. But somehow this one is supposed to be your community, and you’re experiencing them within “your” community.
And, you like what you seem to see in “your” community. You see people who share a lot of your basic values. You see people experiencing togetherness and community that they had never experienced before. And, you want to take the same things and go farther with them. Open up doors for more people. People like you, but also other people. You start seeing what it means for people to be excluded on the basis of, maybe not being Barnards, but being Collinses or Smiths. And you start to think, “Wow, I agree with the ideas, but I don’t fit here, how can I fit, how can others fit?”
And you start seeing what the consequences are, of all the words that people are saying. It’s not just that your feelings are hurt. It’s that you are being bombarded with reminders of the fact that people like you, and other people, are not wanted, are not desirable, are not real people. And these have consequences, these are the ideas that lock people in institutions, these are ideas that prevent people from having this sense of community, these are even ideas that kill people, and justify people’s deaths.
So, you say something. You think that, since these people have faced exclusion themselves, they’ll see what you mean.
And, you get things like:
“I don’t hate Barnards. You’re not a Barnard anyway. I’m not prejudiced. I’m really insulted that you think I’m prejudiced.”
“Well, Barnards never show up. You’re the first one. And… you’re different, than, you know, some Barnards.”
“I would have never known you were a Barnard.”
“Your negativity could destroy the community. Do you want that??? Do you realize what’s at stake???”
“Your issues are not accessibility issues. They’re Barnard issues. Deal with it.”
“You’re doing a lot of damage with your accusations. Stop.”
“We don’t really have the ability to accommodate everyone. We’ll win rights and justice for ourselves, first. You have to realize, a lot of us don’t really want to be associated with Barnards, and that is our right. Later on, though, you guys might be able to fight for your rights, but right now, let the rest of us handle things. Including people like you would just slow us down.”
“You’re attacking us! How DARE you after all we’ve done for you Barnards?”
“You’re being divisive.”
“We’ve had Barnards here before, and none of them complained. I don’t believe you when you say they did complain — to you. There have always been a couple Barnards and there has never been a problem until you.”
“Can’t you see that all you do is cause a lot of destructive bickering and negative energy?”
“I see that you’re a Barnard. You know, your deficits as a Barnard would make it impossible for you to see the real situation here. In fact, I don’t really believe that you’re the person bringing up these objections, I think you’re being exploited.”
“Thank you so much for sharing such important feelings with us. But in the future, can you please use I-statements? The formula for I-statements is ‘When you [x], I feel [y].’ That’s the only respectful way to talk to us, and we’re not going to listen until you can talk that way. Uh… what do you mean it’s not about feelings?”
“Multiple peer-reviewed studies have shown that all communication supposedly coming from Barnards is not real communication, so she [speaking of you in the third person] isn’t really saying this, it just looks like she is.”
“A real Barnard would be spiritual and pure and loving. You’re too angry to be a Barnard. You’re a liar.”
“I’m sorry you feel that way.”
“You must just have a chip on your shoulder.”
“I… have really strong feelings… and… they’re hurt… by conflict… and you’re creating conflict… and I can’t deal with conflict… and so… stop the conflict… stop complaining… stop whining… stop bickering. I’m very sensitive to emotions… very empathic… so I know you’re not for real.”
You know, they told me, I don’t look — Nobody would have to . . . I could be just another crip.
And as if I were just another crip, they started with the jokes and comebacks.
“She asked me whether my toenails still grow; I asked her whether her hair still grows.”
“They want cognitive disability representation? Why don’t they just ask ‘SuperChris’: he’s cognitively disabled.”
“They may be able-bodied, but we’re able-minded.”
They didn’t mean me, of course. I wasn’t like that, wasn’t like them. They meant no offense.
Perhaps it is enough to say that my vision of “the disability community” and theirs does not coincide.
— Cal Montgomery, Critic of the Dawn
And, of course…
“I don’t understand. Things were just fine until you came along, and now I’m upset, and… stop it.”
Never mind that, things have not been just fine, for Barnards, all along. And never mind that there’s been constant and unrelenting and real negativity all along, just pointed at Barnards, and that pointing this out is not what makes it negative. It’s just that, if it’s pointed out how not-fine things are for Barnards, that might spoil the illusion that things are just fine. But from the perspective of non-Barnards, things really are just fine, and since they don’t feel like they’re excluding Barnards, they must not be.
Of course, it’s perfectly possible for someone to pull the example of Barnards out, to promote horrible things. I know a woman who always yells, “But what about the Barnards?!?!?” whenever people talk about torture at the Judge Rotenberg Center. Somehow, “Torture is good for Barnards” has never struck me as particularly humanitarian, but there are people who tell me on a regular basis that I’m inhumane for wanting torture to stop. Apparently, opposing torture is discrimination against Barnards. I’m not buying it.
At the same time, it’s very easy for people to say “I’m not buying it” when there really is discrimination against Barnards. When a physical-disabity-centric event isn’t cognitively accessible to most Barnards attending, it’s easy for them to say “It’s not discrimination, it’s just the way it is.” And they’re wrong.
So, I guess the point of all this is, there are many forms of ableism that go overlooked within communities, precisely because of what the communities mean to many of the people in them. Many people believe “I have been harmed, therefore I cannot do harm,” and do harm. Many people believe “If I examine ableism in this community, it might rip the community apart, it might no longer be there for me,” and don’t examine it.
So, when a Barnard says, “Hey, wait a minute,” don’t assume that things were “just fine” until they spoke up. They might just want to be broadening your community, and your ideas, to include more people. And ableism isn’t always obvious, it doesn’t carry a neon sign in our thoughts and actions saying “We are being ableist,” but it is no less there.
Ballastexistenz 