Monthly Archives: March 2007

What people think they know.

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Ann and Marcos both work in the same office building, but not in the same office. Ann sees her co-worker, Joan, on a daily basis. Joan says hello to Ann in the morning, sits at her desk, does her job, speaks politely to people throughout the day when needed, and seems just like every other worker in the building.

When Marcos goes on his lunch break, he walks through a park, where he sees a woman every day. She is often crouched on the ground and lining up sticks in particular patterns. Sometimes she lies on her back and flicks objects in front of her eyes. He sees the same woman while he is walking home sometimes. Her hands are moving a mile a minute in unusual patterns while she repeats the same words over and over. He has tried to say hello to her, but she doesn’t respond.

Ann does not see Joan’s legs moving around constantly under the desk, or her right hand constantly gripping or twiddling something, also under the desk. She does not see that when Joan goes into the bathroom, she’s not actually using the toilet, but practically collapsing in exhaustion before going through a frantic series of movements and activities that she’s been suppressing all day, all carefully timed so that she doesn’t appear to be spending too much time in there. She does not see that much of the time when Joan doesn’t talk, it’s not because she is just busy working, but because she actually can’t talk any more than the demands of the day already put on her. She actually has a very limited ability to speak and uses it for the very few verbal exchanges required in her job, which she performs flawlessly, but which she could not perform many more of before speech would break down entirely. She does not see where Joan goes on her lunch hours, and she does not see what Joan looks like as she is walking home, because she lives in a different part of town than Joan and drives rather than walks.

Marcos does not see Joan at work. He does not see that she competently performs the duties of a secretary all day when she is not at lunch or walking home. He does not see her recognizing the existence of other people, nor does he see her speaking in an intelligible or communicative way. He does not see her sitting quietly at a desk doing her job.

But if Ann and Marcos are like most people, they think they know pretty much all there is to know about Joan’s life.

Ann thinks that Joan is a standard-issue, non-disabled person, maybe a little nervous or quiet but not overly so, and assumes that she is capable of a number of things throughout the day that Ann never actually sees her doing, but just imagines over the top of Joan.

Marcos thinks that Joan is “crazy”, “retarded”, or “autistic”. He assumes that she probably doesn’t have a job, he might not even think she has a home at all, and if she does, he imagines that she probably lives in a group home.

Ann is stunned to find out that Joan is autistic and does not believe her. She says that Joan is clearly capable of all sorts of things she’s never actually seen Joan do (but is utterly sure that since Joan does a certain limited number of other things throughout the day, then Joan can do them all day long and do a number of other things besides) and that Joan is probably one of those trendy self-diagnosers out there. Marcos is stunned to find out that Joan has a job requiring a fair bit of intellectual work and can carry on a coherent conversation. If Ann and Marcos had a conversation together, and both mentioned Joan, it is unlikely that they would realize they were talking about the same person.

Yet that is what I see happening all the time. People see a very tiny amount of a person’s life and assume they know the rest.

This is why I agree with Cal Montgomery in an article she wrote, A Hard Look At Invisible Disability. Some people take that article as being about “the position of invisibly disabled people in the disability rights movement” (I know because I’ve seen it written about that way). That’s not what it’s about.

It’s about the idea that “invisible” disability is a misnomer. It makes it sound like there’s something intrinsic to the person that makes their particular body type impossible to perceive. In reality, the people not seeing that someone is disabled are not seeing it in part because they expect people to be non-disabled until shown otherwise. The “invisibility” is not intrinsic to any sort of “disability” (either social-model or individual-model), it’s dependent on context and on the assumptions of the person perceiving it. To call it “invisible disability” is to make the invisibility about the disabled person, rather than about the people who are interacting with the disabled person and the assumptions they bring that makes that person look disabled or non-disabled to them. The assumptions create visibility and invisibility, the actual body of the disabled person doesn’t.

To give an example of the opposite assumption, by the way, you only have to look at how I perceived people after I had been in institutions and special ed for awhile. I would walk down the street, and see all kinds of people. I would expect every single one of them to be disabled. I would expect each one to start behaving unusually or shrieking or rocking or something. I was more surprised (and alarmed) when they didn’t than when they did. Around me, nobody could have been considered “invisibly disabled” because I assumed everyone was disabled until proven otherwise.

And now — today — when there is something that I don’t know about someone, I mostly leave it as a blank space. If I see someone at work, I don’t assume that I know what they are like on their breaks or at home or even when they go to the bathroom. I don’t assume that I know their level of fatigue, overload, pain, or emotional distress. I don’t assume that just because they can talk to me in one situation means that they can talk — to me or anyone else — in another situation or for another reason, or that just because I don’t see them talking at some point, that somehow that means they could never talk in any circumstance.

What I don’t get is why it’s so necessary to fill in those blanks. What’s so awful about blank space? What drives people to shock that someone of a certain appearance can do something totally unrelated to that appearance, or to disbelief that someone who “appears normal” to them in a highly limited set of contexts is actually disabled (and possibly unable to “appear normal” in any other context or with any additional demands placed on them)? Why do people smugly insist that they know so much about other people, based on incredibly limited evidence?

Edited to add, years later: For another blogger’s take on the same phenomenon, read That Which Goes Unseen by Dora Raymaker.

By the way…

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…this is fairly trivial, but I’m still trying to figure out which wise-ass at CNN decided to use the instrumental part of Subterranean Homesick Alien on the introduction of the second night’s broadcast. (I’m not sure Laura figured out for awhile why I was laughing so hard within the first few seconds of the show. I still find this highly amusing.)

D’s Autism Society Presentation (November, 2006)

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Autism Diva posted this already, but I’m posting it again:

By an autistic boy whose mother I know, from his typed answers to questions at an autism conference. He was 9 or 10 years old when he did this.

Some of my favorite questions and answers:

Do “normal people” sometimes scare you?

No, normal people don’t trouble me, but people who wished that I was normal — that is, people who see me as only a broken normal person rather than as an intact autistic person — do hurt me.

Describe one or two things that people can do to help you.

They can have utter respect for diversity, and they can understand that diversity leads a tattered life when not wedded to tolerance.

Do you think it would be a good thing if researchers found a cure for autism and Asperger’s?

The road to Hades is paved with good intentions.

Would you want to be cured?

I would rather be cured of bigotry before being cured of autism.

One last unsolicited comment: It is my profound opinion that those who desire to divide us into “high” versus “low-functioning” autistics deliver a great disservice to our common quest for true equality.

Assorted things I’ve meant to say, from the other side of the usual time-barrier.

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It’s happened again. My brain, without my consent or approval, periodically divides time into chunks. I woke up this morning and felt as if anything that happened before today — even yesterday — might have been weeks ago, somewhere off in the distance at any rate. This usually happens to me sometime after stressful events, I imagine it’s some sort of cognitive partitioning thing. It’s heavily disorienting, though, when it does happen. Everything gets divided up into some kind of “before,” and then now. And “before” is a long way before, even if it’s only a few minutes before the dividing line. This happens to me after major meetings, after conferences, after giving speeches, after medical emergencies, and apparently after television appearances.

But it leaves me in a strange position. I’ve been trying, I know, to write up a description of how various events happened. Now they feel like they happened a long time ago, or like they’re on the other side of a wall I can’t cross. I know from experience that in several weeks time (possibly sooner), I will find it easier to remember them, but the memories will also be less detailed than they had been before.

And so I am sitting here, almost as if those things haven’t happened, except I now have a lot of new readers to my blog, most of them with questions, many of which I can’t answer, because I don’t know them or their children. And some of which I don’t want to answer yet because I tend to prefer getting to know people rather than becoming what I used to call a “dispensing machine,” in which people select the right questions and I spit out answers, but there’s no reciprocity involved. Strange how when I know someone I don’t mind answering them, but when I don’t know them it seems invasive. Or maybe not strange. It’s hard to know when you’re part of a category of people who are expected to answer detailed questions about ourselves on a regular basis, in a way that most people are not.

My television appearance has caused several opinions to sprout up that I find equally confusing. One is that I automatically represent people’s children, and will automatically understand their children, even if I’ve never met their children, don’t know their children, don’t have a lot in common with some of their children, etc. Another is that I am too “high functioning” to be shown on TV, because obviously I’m supposed to represent everyone, and I clearly don’t represent certain people. Another is that I am too “low functioning” to be shown on TV, for equal and opposite reasons. Another is that I have too many unusual traits as an autistic person to be shown on TV. Etc.

And it’s strange to see how my story has been packaged. By other people. Because I do my best to tell it to them as it was (within the limits of time and words and language skills), and they pick the parts they find most relevant and run with them. Many of them don’t even do it on purpose, but distortions creep in. Then I’m displayed to the world in all my distorted packaging and people see some of the distortions before they see the person. Then they speak to me as if I am these distortions, and I don’t know how to break it to them who I really am, or what I’m really about. That becomes magnified to the nth degree when it happens on international television. I don’t know how real celebrities stand it.

My first reaction on seeing the CNN show was that I didn’t belong there. My face didn’t belong across the back of a newsroom. I didn’t belong on a television set. I belonged in real life. (Where I was, right then, trying unsuccessfully to hide behind my friend’s bird cage.) It didn’t seem real, and it didn’t seem right. I was sitting in my friend’s bedroom watching her TV, and we were one room away from where half the interviews had taken place, I could see where the interviews had taken place, and I could see them taking place on TV, and I was there on TV and I wasn’t there in the next room, and that sort of thing totally disoriented me. Since I saw myself in that room on the TV I kept expecting to peer around the corner and see myself in the next room, except here I was sitting in this room, and it felt like there were altogether too many of me to keep track of. I wanted to pull the other me off of the television set and get rid of her, because there only needed to be one me and I was already here. I started hitting myself in the shoulder to remind myself I existed where I was and not in the TV.

My friend was trying to tell me they’d actually done a better job than she expected, and that it wasn’t too awful, but it wasn’t all that reassuring at the time. I did notice that on both nights, they were reasonably good at capturing a confusing and complex language history within sound-bite length, although they left out the trouble I had when I was very young. They left in the head-banging, which I’d asked them to remove but they said they didn’t have editorial control over it. For anyone still wondering, I didn’t bang my head because I’m intelligent and trapped (which isn’t a construct I use for viewing myself), I banged my head because I was extremely stressed out by the whole thing and then a typo I made was the last straw. And I only did it for a short time, and it was the first time in months I’d done it. (I used to do it all the time, but I’ve gained a lot of control since then.)

And the whole time I looked a lot more autistic than usual (I don’t know any other way to put it) because I was so terrified of having cameras and reporters following me around all day. I was afraid of that. Laura kept telling me that it’s internalized disability oppression or something, that I shouldn’t mind looking like that. But I really am more animated than that most of the time. I look like that during high-stress meetings with caseworkers and such, and I guess my brain processed this as a high-stress meeting. I kept trying to will myself into something more animated and it just wouldn’t happen, fear had near-total control over my movements. And I knew, very distinctly, that people see you for a minute and think this is how you look all the time. If I’d been more animated, people would’ve thought that’s how I look all the time, and would’ve found it really weird to watch me as I looked on the CNN thing. As it was, I bet people would find my usual appearance the weird thing.

Fluctuations aren’t part of most people’s heuristics for understanding a person. The idea that I might move differently at different times, and have different unusual movements at different times, doesn’t cross some people’s minds, at all, and I’ve paid the price in the past of the assumption that five minutes or so of watching me move on a particular day in a particular situation is the totality of what I look like. So I was super-self-conscious.

The same thing was a problem during the second interview, in a way. I was fully aware that my responses to questions when “put on the spot” would be considered more “real” than my responses to questions when I had time to think. Some of the questions were really hard, because they involved juggling the words of the person, and juggling the words to respond, and somewhere in there I had to actually figure out how to insert the thoughts and memories into the right places.

There was one question in particular, about a woman I met at AutCom. She and I had said hi in an autie way and it was great. I gave it as an example of autistic communication, because it’s such a great example. She had circled my table, I had timed my rocking a little different, and in that way we acknowledged each other’s presence. But he wanted to know why I hadn’t just waved or something. And it’s something I’d never thought about. I mean, it’s like asking a non-autistic person, “Why didn’t you just thumb your nose at her to say hello?” It wouldn’t occur to someone. And I didn’t have the time to think my way back into the sensory experience of the situation at first, so I was spouting off answers to him, but only in the end gave a partial answer that wasn’t used after the editing, but closest to the reality of the situation:

We were both in a crowded hotel ballroom, in a chaotic and unfamiliar environment, and as I recall my body was busy moving every single part of itself as well as making grinding noises in its throat in order to comprehend what was around me. I could only type one-fingered in that environment, and I certainly wasn’t going to be able to lift up an arm and wave. And that’s even if I had thought to, which frankly I didn’t. That sort of thing doesn’t occur to me at random, and it certainly doesn’t occur to me when I already have a better communication method in place. It would be out of place, intrusive, invasive, and wrong, not just potentially invasive to her, but invasive to me, because I was already using my hands to flick around to try to control the chaos. (Chaos which had caused my first action upon entering the hotel — where there was a conference, three weddings, a bar mitzvah, and a Lions Club gathering taking place — to be freezing in place and then vomiting. I had to be using every single bit of me for its own purposes to regulate my senses, and even typing was difficult in that environment.) Moreover, often when I try to wave while concentrating on everything else, what happens is my hand goes up partially and then hits my chair really hard, which in turn looks kind of aggressive.

But in my response, I only managed to flail at that answer from several angles, I couldn’t figure out how to capture the entirety of an autistic perceptual system and all its differentness in a few sentences. And I was painfully aware of that when I saw it air on the television set. Plus, by the time I was answering Dr. Gupta’s questions, I was so tired that I really needed to be lying down, not sitting up, if I wanted to think. But the camera couldn’t handle me lying down, so I had to sit up, and it definitely made it harder to understand things. When I went to lie down afterwards, I felt like I could give a better interview, but the camera by then was turned off and being packed up to take it down the hall.

In the middle of the disorientation and discomfort following the first broadcast, I started getting questions. I was supposed to answer the ones CNN gave me the next day. I have a really hard time answering some of the simplest questions at times. I plowed through the questions on adrenaline and then caffeine, and hoped my answers were good enough. I got them in five minutes before the deadline. All of this had taken me well off of my comfortable territory. And then my blog was taken up with questions from strangers, many of them clearly questions of the sort that would set off a long game of assumption ping-pong. I was really glad to see andreashettle and n. start pointing people to answers within the blog.

Plus I was getting some creepy people. One guy gave me his home address and said he wanted a girlfriend. A few people were putting me on the kind of spiritual pedestal that actually demeans my real spiritual life by reducing it to a thing about a person instead of a thing about God. Some people were actually saying I should pray for healing from autism, when actually I think God made me autistic (and made other people non-autistic, and that’s fine too) and that I don’t need to be healed from something I’m supposed to be. And many people were asking me questions that I am fairly certain people don’t normally ask total strangers. I had no internal template for responding to any of this so I just ignored it, but with growing unease.

And in all this I paid mostly attention to the people I already knew. Somehow that seemed, and still in many ways seems, safer. Because they know who I am, they know more about me than I’ve ever put on the web or on TV. I’m really glad also for people like Jerry Newport and Donna Williams and Laura Tisoncik, who’ve all seen their share of publicity, writing to me about how to handle this stuff. Not all of us have always gotten along or agreed on everything but they get how weird and scary this is.

Laura told me there’s two major bad ways to respond to publicity, which are really two parts of the same thing. One of them is to seek it out for its own sake, and to do things specifically in order to get it. The other is to avoid it because it’s uncomfortable and you don’t want it, and to do things specifically in order not to get it. In both cases you’re acting on your desire for, or lack of desire for, publicity, and not on your desire to do the right thing. CNN is asking me about other things to do, and I’m still considering them, I haven’t had the chance to let my mind settle enough to know what is the right thing to do. Not the least or the most publicity-getting thing to do, but the right thing taking the whole situation into account. I’m still thinking, I still need to discuss it with people I trust.

Another odd aspect of some of the responses is the idea that autistic people walk right off the pages of textbooks. We don’t. We’re regular people, with regular, messy lives. We don’t fit into tidy categories. If ever a group of people didn’t read the rulebook when being born, it’s us. Many of us have additional things going on besides being autistic. Michelle Dawson has a visual impairment, Sharisa Kochmeister has CP, Gunilla Gerland and Donna Williams come from unstable families, Thomas McKean has a fantasy world and hears voices, Gunilla Gerland and Jerry and Mary Newport have all done drugs of some kind at some point, Dawn Prince-Hughes was an exotic dancer, Jim Sinclair is intersexed, Jeanette Purkis was involved in crime and at one point diagnosed with a personality disorder, Donna Williams and Thomas McKean and Adriana Rocha and a number of others have talked about experiences that most people would consider paranormal, Georgiana Thomas saw demons when she was younger that vanished when she became a Christian, Adriana Rocha thinks she’s the reincarnation of John the Baptist, Jerry and Mary Newport as well as Donna Williams have savant skills, Sue Rubin has Noonan’s syndrome, Kassiane Sibley has Rett’s syndrome, Jim Sinclair and Laura Tisoncik use wheelchairs, Jim Sinclair and Mary Newport have both talked about losing various skills at certain ages older than the usual so-called “regression” age, Sondra Williams and Jerry and Mary Newport and Liane Holliday-Willey and Donna Williams and Dawn Prince-Hughes are all in marriages or committed relationships and some of them have children, Liane Holliday-Willey and some others can fake normalcy enough to pass, Donna Williams and some others have had personas they used in order to pass, many of them had prior misdiagnoses of mental retardation or schizophrenia or personality disorders, and so on and so on and so forth.

Yet all of us are autistic. Being non-stereotypical, or having other things going on, or having unusual beliefs, or life experiences that are unusual for autistic people, and so on and so forth, is just the variety of having a real life and not something pulled out of a textbook. I have heard each of the above authors blasted at various times for the characteristics I listed, either because they were not fitting a stereotype, or because they were fitting a stereotype, or because they could “lead to confusion between autism and other things” just by existing, or because by having abusive families they’d further the refrigerator parent idea, and so on and so forth. I have also heard them told they’re not autistic because they have some of these characteristics.

But the reality is, autistic people are not uniform in the least bit. We have large numbers of significant things in common (some more than others, and what we have in common with each other may vary, but there’s enough in common to legitimately share a label generally), but they are not things that would prevent all these other things from going on in our lives. Our lives are not taken out of textbooks. We do not live according to broken rules someone has invented for how autistic people’s lives should go. We live in the same messy reality everyone else does. The one thing autistic people all seem to have in common, is that we don’t read some rulebook when we’re born that says “Here, you are autistic, therefore you must do things this one way that is delineated by various textbooks about autism.”

All of this variation does not mean that we can’t make statements about our rights, though. We just have to take everyone into account. I am never going to say that some people belong in institutions because they have severe self-injury. I am going to look at how my society shuts certain kinds of people with severe self-injury in institutions (“certain kinds”, because we do not do this to chain smokers generally), why that is considered protective, why this is considered okay, and how a person with severe self-injury can live outside institutions, preferably without being tortured. (I even have a vested interest in that one, having at one point banged my head often and hard enough to do damage and far more often than the standard criteria for severe head-banging. And I have no desire to ever live in an institution again even if I do that.) Some people would say that opposing institutions leaves out people with severe self-injury, but I would totally disagree with that.

And I simply can’t understand the attitude that says “Don’t show this one person on TV, they’re not representative.” Who is? And who says that when we appear on TV, it’s to be representative in every way of every autistic person? Might it not be because we have ideas that are important to the world, independent of our particular medical labels? (And some of the labels that were used on the broadcast are not terms I would use for myself, for that matter.)

And something Donna Williams said once, I want to add in here too:

I used to be intense about precision. The media knocked that out of me. The way I am talked of, advertised, packaged, pulled apart, even heralded and praised, has taught me to give in about my insistence others must be precise in their representations of me. All I need to know is that I know me… and maybe those most personal and closest to me. But I had to learn to let them see me through their eyes, their feelings, their structures too. Anyway, the more strangers describe me through their own baggage or are way off mark from who I am or how I work, the more they have helped me to dearly value those close to me… and that was something I was very aloof about before. So I thank those who ever portrayed me wrong. You helped me immensely. What can make us crumble, can often also make us more whole… its a matter of focus- self as a victim of crappy experiences versus crappy experiences as an indicator of what’s needed or how great other stuff is by contrast.

Gossip isn’t you and it isn’t yours unless you created it directly by your own hand. If it’s not yours, you can’t control it and time is worth everything. Change what you can but also learn that giving up isn’t giving in. Learn to say ’so what’, ’so bloody what’… then get on with it.

I did get responses from people who knew me. Both my brothers called. So did my parents. My great-uncle was proud and said I look like an Oleson. My grandparents were happy. My neighbor down the street growing up said “That’s our Amanda.” My brother’s ex-girlfriend, who’d lived with us when I was a kid, talked to my mom about playing with me and stuff when I was little. Responses from people who’d known me most of my life meant a lot.

I don’t even know if this post has been coherent. These are various thoughts that have been swirling around my head since it happened, and I think now that I’m on the other side of that time-barrier in my head I can step back and write about a few of them (even though things seem like blank empty space to me on the other side of the barrier). I hope it’s made at least some sense, and I apologize for all the rambliness. This is what happens when I try to write something like this while sick and time-disoriented.

Would have written again, but…

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I was just about at the point where cognitively I was getting back to normal and was starting to write the beginnings of blog posts again, and now I have caught some kind of bug. And it’s affecting asthma. And it had better not affect me as badly as the last bug I caught did, because I hate Prednisone. But I’m already back into the moderate range when I’d finally gotten myself solidly into the mild range recently (to those who asked, I now have a Honeywell air purifier in the living room, an IQ Air in the bedroom, and a Miele vacuum cleaner, all of those bought by other people that I’m very grateful to at the moment), and I’m already finding at times that breathing is about all I can concentrate on. So it looks like a lot of boring rest for awhile (and I’ll probably rest less than I should, but it’s what I’m supposed to be doing).