Tag Archives: Death

Aspie Supremacy can kill.

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A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA. When I use these words I am discussing the beliefs of people who do believe in them. Edited to add: aspie supremacy is a shorthand and people should be aware that the prejudice contained within it can and does affect many with the AS dx.

I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.

Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.

Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.

A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.

Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.

When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.

Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.

Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.

But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.

I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.1 I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”

Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.

I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.

1 Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.

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Right here, right now.

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In my last post I talked about my tendency to have an automatic and instinctive assumption that dead people were still around. Again, regardless of my current religious beliefs at any given time — I am not talking about heaven hell or purgatory, not talking about ghosts, and not talking about living on in my heart. I mean the literal assumption that they are still living. Except possibly in another time period that I have no personal access to. But I process other time periods as “now” instinctively too, so it all gets very confusing and not conducive to the English language.

I got to thinking about whether it was a more general thing about my conception of time, or some other thing beyond specifically about people who have died. And I realized I do it about objects that have been lost or irretrievably transformed, and places that have been destroyed or transformed.

When I was a kid, there was a VIC-20 game called Omega Race, and a book having to do with a character called Underdog. Both of these objects were obviously and completely lost. Not coming back. I had no particular attachment to them beyond other similar objects, but I insisted on scouring every conceivable location for them over and over again. This was not (as it looked) because I thought I might have missed a place, or (as my brother said of searching for lost items) because I “kept looking in my favorite locations hoping they would turn up”. It was because they had been right here. Right in front of me. And therefore they were right in front of me now. And there must be something wrong with me that I could no longer reach out and touch them. Because in my mind back then, “They are right here darn it, I have grabbed them a zillion times, and it makes no sense that I cannot grab them now.”

If that was traumatic (and it was), when it happens with places it is even worse. I know somewhere deep inside me that there is a Video King store, right near D&J Hobby. You go in and there are videos and Nintendo games for rent. Each video has a little tag you take off and bring to the register, and there are different ones for VHS and Beta. This exists. Now. But I go there later and it is replaced or empty. And that is hellish, because it should exist and there is no reason for it not to.

(It’s strange. Sometimes things work like this, and sometimes the moment something is out of direct perception, it never existed — I can turn around and not remember what was on my other side, move a hand and the thing I am touching is no longer there and totally forgotten. I wonder what the difference is, and why I seem to have both of those reactions instead of the reaction I have only intellectually memorized, where things change and the past and future stay firmly outside of “now”, and you remember things as past while knowing it is the past and not now. I seem to overshoot that mark in both directions.)

Sometimes this even goes for tiny changes, so that, for instance, I perceive myself as currently and simultaneously in every location I have ever been. And it also happens with myself growing and changing, such that for a long time I had constant silent and wordless conversations with my “past selves” (for lack of a better term) because they were all “right now” at once. And for awhile I would walk along routes that took me to places from my past (which I was sure were still there) and if I happened to find people from my past I would triumphantly interact with them and expect them to be as excited that they were still there as I was. (I had no way of explaining this to anyone though, so if anyone wonders the real reason I at one point started showing up at both of my elementary schools and giving long nonsensical reasons for it if asked? This is the real reason. I just had no way of saying it, so I made up the only responses that were available at the time (borrowed from dystopian novels, I think), with disastrous results on one such occasion. I knew you had to give responses, I didn’t know they had to pertain to what was going on inside my head, and if I had known I wouldn’t have been able to give one anyway.)

So I know this is how I have perceived things ever since I was old enough to figure out that unseen objects still existed (which I figured out late and sometimes still don’t know — it’s a skill that doesn’t permanently take for me, it comes and goes). I know it is not how most people perceive things, from the reactions I have gotten when I bring parts of it up with people. I can sometimes intellectually decide things are different than this, but my bones (or my brains) say otherwise. I don’t know if it’s due to my temporal lobe oddities or something else, but it is definitely related to how I perceive dead people. It’s one of those things I could never talk about or ask about growing up, where maybe if I had been able to I would have “corrected” myself. Or maybe not. But it’s still terrible to be confronted with the solid evidence that something that is right now right here, is… gone, or changed, or different. And yet even past that point, my mind still believes it is right here.

There’s something about death I don’t understand.

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There have been two significant deaths to me recently. My grandfather died just before Christmas. And Judi Chamberlin (the first psych survivor I saw besides myself who challenged the leadership in that community by the likes of Szasz, Laing, Breggin, and other professionals who upheld many of the destructive power structures within psychiatry while claiming to be rid of them — she wrote a really good book called On Our Own) died this weekend.

And yet again I am coming up against my instinctive responses to death, that don’t seem to be all that standard. (Note that these are instinctive reactions and have been totally unchanging regardless of my religion or lack thereof. The second one especially is not a view or belief, it’s an involuntary reaction on the same level as most people’s assumption that their house looks the sane every day unless something specific changes it.)

For one thing, my memories of people who have died do not do that peculiar transformation I see in other people’s minds. That is, I remember the people the exact same way I remembered them in life. They don’t transform into saints, the bad memories don’t go away, I do not suddenly see them as all good and no bad. I know that this steps on a massive taboo. I did not know how massive until I saw people judging my entire character on the fact that when a particular person died a while back I did not suddenly cease to criticize the dead person’s actions (even though the dead person had called for dreadful things to happen to people like me, and even though the dead person continued after death to have the level of influence that would make those bad things more likely).

Whereas I find it incredibly disturbing that when people I know die, even people I mostly like, suddenly they are transformed in eulogies into people who never existed. Sometimes the eulogies even turned those people into the opposite of who they were in life — a total gossip will be described as never having an unkind word to say about anyone. This strikes me as frightening, disturbing, and disrespectful, but then my way seems to strike most people the same way. (Hint: If I were really the monster some people have made me into for viewing things this way, I would not care about how disturbing I find it to disrespect the dead by turning them into people they never were.)

So that was thing number one about my reaction to death that seems to be weird.

Thing number two is related but different. This is that not only does my memory not suddenly change the person into someone they weren’t, but that my memory does not change at all. The person is still there as far as I am concerned. I continue to use the present tense, not just by habit but because as far as I am concerned the person still exists even when I am fully aware of the fact of their death. I have heard of something superficially similar happening during denial but this is not denial. It happens whether I am grieving a good deal or grieving not at all. I simply don’t see the person as gone. I don’t see people who died thousands of years ago as gone either, I just see them as… temporally inaccessible or something. I grieve for our inability to inhabit the same time-area as each other anymore, but I don’t grieve for their nonexistence because they seem to exist, just somewhere (or rather somewhen) I can’t share with them now.

The first thing makes me into a terrible person in some people’s eyes. The second just seems to make me strange. But both of them are just how I am, I can’t imagine what it’s like to be otherwise. I mean I won’t go to a funeral and talk about how much I can’t stand the dead person, but I see nothing wrong with discussing their faults somewhere else (and I see a good deal wrong with actually changing descriptions of who the person is and what they have done just because they are dead — it’s one thing to refrain from talking about the bad points with people who are grieving, but actively claiming the opposite? Just… no, that erases the person more than death ever could).

And as for the second thing (which I find more interesting by far)… what is it about me that doesn’t respond the same way most people seem to when death occurs? I have talked to a lot of people and very few respond the way I do, or even understand my response. And I don’t understand theirs either. Why is it that most people process death so differently? Why does death seem to me almost as if it didn’t happen? Is there something about death I just don’t understand?

(And before anyone asks, I doubt that either one of these has to do with autism. Many of the differences between me and others on both counts are things I have observed both within and outside the autistic community. I have only met a few people who see both the way I do.)

Oh, and I am not printing comments that claim I am evil or something. It’s one thing to discuss different viewpoints about death in this situation. It’s a whole different ballgame to use my personal reactions to two recent deaths of a relative and a role model to castigate me for not mourning “properly”. Heed the difference, I will not tolerate the crossing of that line.

R.I.P. Harriet McBryde Johnson

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I only knew her from her writing, but I cried when I heard.

And I’m still having trouble believing she’s dead. She was so fundamentally there, and now she’s not there. I’ve edited this to include a lot of the links that were missing last night, plus a quote.

Unspeakable Conversations is her most famous article.

The Disability Gulag is another.

Not Dead At All is another.

She wrote a book called Too Late to Die Young: Nearly True Tales from a Life. One excerpt is here.

She wrote another book, this one fictional, called Accidents of Nature.

She did a talk at the Holocaust Memorial Museum called Medical Ethics: Legitimizing the Unthinkable, and she answered questions like What is a disability? and Can we talk about cure?, Why as a kid did we protest telethons, and So let me ask you, when you think about this question of cure and what you saw in Deadly Medicine.

New Mobility named her Person of the Year in 2004.

I’ll end this with a quote by her from Too Late to Die Young. I wish all autistic people who think that they’re non-disabled just because they find pleasure in being autistic, would read it and rethink what they think they know about the experience of disability. I think it exemplifies the core of what she was trying to do, what a lot of us are trying to do. And in the end it speaks for itself:

My path is constrained but endlessly varied. I watch the sun move up in the morning sky and in and out of clouds, take in the changing light that constantly reinvents the cities classic, composed beauty. I feel the moist air roll over my just-washed skin, breathe in the odors of sea and flowering trees and restaurant grease. Some of the best mornings are the mornings when nothing happens, when there is no story but the continuing relationship of this old city with the ocean that roars just out of sight and with the living jungle that tentatively tolerates our existence here.

How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure.

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that might seem a bit odd.

Let me give some examples.

John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know.

A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty.

Barry Corbet, a hotshot para now falling apart, is stuck in bed for several weeks with a pressure sore. As he lives with one marvelous view, he says life doesn’t go away; where would it go? he says life has never been richer or more juicy.

In an essay on smell, Helen Keller wrote that she could never warm up to another person who did not have a distinct and recognizable body odor.

After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known.

My friend Kermit, a quad on a budget, goes out to lobby the legislature and finds a coffee under way. He can’t grasp with his hands so he makes a legislator feed him a donut. The last lobbyist out removes his clip-on tie.

At a summer camp, a mentally retarded boy badgers a girl in a wheelchair to teach him to play checkers. He knows he’s slow and she’s bored, but he won’t give up. Then something clicks and her explanations make sense at last and he sees the patterns and wins the game. For the smart girl in the chair — for me — it’s a humorous, humbling lesson. For the slow boy, there’s joy in pushing his intellectual limits. The peculiar pleasure is unique to each of us, but it’s also shared; the sharing makes a bridge across our differences.

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body — imperfect, impermanent, falling apart — is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.

Some people, disabled and otherwise, conceptualize a self distinct and apart from the body. I may at one time have done so. I’m not sure. I know it is somehow possible for me to talk about me and my body as though separate, even though my mind and heart say we are one. At this stage in my life, my body constantly makes its presence known as needed, telling me with an urgent pain to deal with a wrinkle under my seat belt, or reminding me with a tremble or ache or flutter of its desire for food or rest or some other pleasure. Now the body I live in doesn’t only affect me. It is me.

The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.