I didn’t know Norm Kunc and Emma Van der Klift had made it to Youtube, but here’s a video they put there, made by San Luis Obispo People First. If you can get it to play, please watch it all the way through. (It’s open-captioned.)

So they’re trying to use genetic engineering to make sure there are fewer autistic people in the world. And they’d do it by offering parents the choice of a female embryo instead of male embryos.

This is stupid. This isn’t autism prevention. It’s boy prevention. If they’d done this, they’d have screened out my brother, who is not autistic. But then they’d have had me, and I am autistic.

But it’s also important to note how people think of things. Preventing autism is in many people’s minds preventing a thing. Preventing a disease. Instead of the reality that autism does not exist separate from autistic people, and it is people (both autistic and non-autistic, since screening out boys is hardly the same as screening out autistic people) who are being prevented here. And being prevented for a reason that has wholly to do with eugenics, the ability to avoid having certain kinds of children altogether. This isn’t about preventing a thing called autism but keeping the person the same, it’s about trying to make sure one kind of person doesn’t exist, and trying to make sure that another kind of person exists instead.

One highly disturbing thing, is that more than one person commenting on a UK article about this has said things along the lines of, “You people don’t know what you’re talking about. Visit a special school sometime. Then you’ll see why people like this need to be eliminated from the gene pool.”

Excuse me?????

This reminds me of a quote I’ve seen by Erik Nanstiel, about some pictures he saw on the web, including this one:

Can I ask something of all of you here? Did you like to see her like that? [...] I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime. [...] I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided. [...] when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine” with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.

You may call this a blank stare, Mr. Nanstiel.

Other people, including people who have always liked my writing, have called it evidence that I shouldn’t be writing what I write, although they didn’t know they were talking about me at the time.

Many people in fact have considered it evidence that I didn’t write what I wrote at all.

I happen to call it something a little different.

I call it my face.

This photograph was taken minutes before I wrote this.

I’m not hiding any exploited autistic people in my apartment, I can assure you. This is what I look like.

My anonymity with regards to the website I wrote is going to disappear, at least in some places, in a few days, thanks to NPR’s rules about anonymity. I had a number of good reasons for staying anonymous (to people who wouldn’t recognize me anyway), too. One of the foremost is because of what I told Cal Montgomery about institutions: When they’re named, people think it’s an individual problem, at an individual institution. I did not intend Getting the Truth Out to include only myself (still don’t), but in the meantime I didn’t want it to be seen as just one person. Many of the perspectives I was including were the perspectives of all kinds of people, both named and unnamed on the site. The issues I raised affect all autistic people. I did not want it drowned out in the midst of interest in an individual story. I still don’t, so I’d ask anyone reading this not to make it into one.

But I don’t know how to make one of the points I’m making in this post while remaining anonymous, either.

In the months after writing that website, I read most of the reactions that were publicly available and some that were not. I read people I had always gotten along with just fine online, who had told me often that they really liked my writing, and so forth. And I read those same people saying things like “Look at this person, is this somebody we really want representing autistics?” “I don’t think someone who looked like that could possibly write something that complicated.” “This has got to be exploitation.” People remarked on everything from my posture to my facial structure to my fat to my story, and concluded such a person was not the sort of person who could write websites.

Other places, I read responses that started along the lines of “I worked in institutions…” “I worked in special education…” “I worked with severely handicapped children…” “My spouse works in these places…”. Then they continued with something along the lines of, “…with people who looked just like that, and I can tell you, authoritatively, that people like that…”. Then they finished along the lines of “…can’t think,” “…can’t write,” “…couldn’t do anything that complicated,” “…aren’t really happy with who they are,” “…will live out their lives in institutions and need constant care,” “…are a burden and not a lot else,” “…do not have a hope of contributing to society,” “…are not anything you’d enjoy or want to be.”

Perhaps now the reason for the title of my blog is clear. People who look like me are ballast-lives until proven otherwise, and sometimes even when “proven otherwise,” we really still are. I don’t happen to believe in Ballastexistenzen, or lebensunwertes Leben, or leeren Menschenhülsen. Whether “proven otherwise” or not, people are people, and I will always stick to that.

But nonetheless, I have been watching people’s reactions to my appearance since before I wrote that website. Still, reading the reactions has been enlightening. Even some people I know and like online hold these views. I’d suspected as much, but hoped not. And the views really seem to run, “Just look at these people, and all your worst prejudices will be confirmed, and you can run off and do bad things to these people or say bad things about these people, with a clear conscience.”

Just go into a special education school, watch students like me, and justify attempts to make sure no more of us will ever have to exist. Because surely watching us in a segregated setting is a wonderful way to get an appreciation for what our lives could be like in a society that accepts us the way it accepts others. Do the people saying that have any freaking clue how insulting that is to their students, their children? Do they have any clue how physically dangerous that is to everyone like their students or children?

No, I want you to look at us and throw your prejudices in the garbage can, stomp on them, and burn them. Instead of stomping on and burning our dignity and our future existence.

I want you to look at us, every one of us, and see the limitless beauty that is possible in the human race. I know it can be hard to see that when you are afraid of someone, or afraid of what it must be like to be that person, but you have to get out of the way and look past yourself to the other person.

I want you to look at every picture that is meant to reinforce your prejudices, and I want you to challenge those prejudices. I want you to be able to look at a black and white photograph of someone like me and see beauty, not a pathetic and pitiful wasted life. I want you to be able to meet disabled people, whether at a special ed school or elsewhere, and look at people, not your mentally projected statistics about our level of pain and suffering (or total lack of capacity thereof) in your estimation devoid of political or any other context.

Look at My Life Is A Gift, a website about Ben Boisot, and read through the writing about the value of all kinds of people. (I’ve seen his mother speak, and while I didn’t agree with everything she had to say, she had that fundamental principle of value down really well.) I’m sure if you saw a black and white photograph of him, or saw him in some dismal special ed class, you’d consider his life awful, too, and preferably to be prevented if possible. But it isn’t.

(Lest you think my life is some kind idealized fantasy-land, by the way, be aware that I’m going to probably puke again within minutes from the Neverending Migraine, and that I’m typing with the screen off because light causes excruciating pain at the moment, and staring at light sounds vaguely masochistic.)

But my underlying point remains the same: It’s wrong to tell people to go off and reinforce their most destructive prejudices by meeting or viewing photographs of people like me, people like my friends, or people like my old classmates. I know that people meet us and don’t really meet us, they just meet their warped perspectives of pitiful awful lives that drain everyone around them and should probably have been prevented to begin with. I know that people view pictures of us and view only what is in their own minds about what our appearances mean, and how they don’t want their children to be like those people. It is wrong to tell people to do this to us, and to themselves. It would be better to tell people to look at who we really are, our real value in the world, and reinforce that, instead of reinforcing people’s worst views of us. It would be better to say that preventing a whole kind of person is eugenics of the worst kind, rather than saying “Just look at them, you’ll see why it’s better that there aren’t more of them.”

Don’t believe for a minute that most of us don’t understand on one level or another what it means to plan for a world without people like us in it. Don’t believe for a minute that “Just look at them” is an argument against our existence, or that there are any legitimate arguments against our existence. And watch what you say about us, we could be listening. ;-)

I’ve now seen X-Men 3. Most of my thoughts on it are summed up in either the post or the comments at the Ragged Edge’s review of the movie (although I’m sure plurals who read this will note that they’re represented in the Ragged Edge comments only by someone who thinks of them as having a “dissociative disorder”). Another thought, which has long bothered me about the X-Men despite liking them, is as follows. (Most of what I’m about to say is common to all X-Men stuff, so there won’t really be spoilers.)

It reinforces a particular way of thinking about people and their political beliefs, that is common but destructive. It lumps several beliefs and actions together, into basically two groups.

Group one (represented by the Brotherhood of Mutants):

• Bad/evil.
• More extreme views relative to the society they are living in.
• Separatist
• Hatred.
• Sense of superiority over non-mutants.
• Willingness to kill or betray without remorse, particularly non-mutants.
• In fact, willingness to kill all non-mutants. Only lives truly concerned with saving are mutant lives, and particularly mutants who are on their side.
• The strongly held belief that mutants are perfectly fine as they are and need no cure.

Group two (represented by the X-Men):

• Good.
• More moderate views relative to the society they are living in.
• Assimiliationist
• Love.
• Sense of equality with non-mutants.
• Primarily trying to save lives, killing only as a last resort and with reluctance, and a general sense of fairness.
• Saving the lives of mutants and non-mutants alike.
• More variety in response to the question of cure.

As one reviewer put it, you’re clearly supposed to side with the “good guys,” but it’s the bad guys making all the best arguments against cure and successfully pointing out the real ways in which it will be used. The issue of siding with the “good guys” is forced by the actions of the “bad guys,” which very few people would condone.

But those two groupings of ideas up above, are not the only way ideas can be grouped. Unfortunately, I’ve actually seen people arguing what views to hold and not to hold, based on whether they sound more like views held by the Brotherhood of Mutants, or more like views held by the X-Men. People are influenced by this stuff. It provides two convenient stereotypes of styles of activism, for one.

For the record, with regards to autism, I don’t believe in a cure, I don’t believe that cure will be voluntary, I don’t believe that even what looks like “voluntarily” choosing a cure is as voluntary as its proponents would have us believe, I believe that prevention would be merely a form of eugenics, I don’t believe that some autistic people are so defective that cure is the only option (I don’t even think of people in general as defective), and my views on many things disability-related are characterized by the society I live in as extreme. At the same time, I am neither hateful nor perpetually angry, I am not a separatist, I have no sense of superiority over anyone, I don’t want to see anyone dead, and I have a strong sense of equality for all kinds of people, autistic and non-autistic.

But take the first several viewpoints, and it’s easy to view me as at least either angry, hateful, or having a certain sense of superiority, based on certain stereotypes of what it means to hold the views I hold. And those are often charges I have to answer to, by people whose vision of the world seems to bear a strong resemblance to the cartoonified simplifications that make their way into the X-Men.

I should note, also, that while I am not a separatist, separatism does not necessarily mean any of those negative things either. It can mean just entirely or primarily wanting contact with a particular kind of people, for all sorts of reasons. There are many autistic people who mainly or entirely have contact with other autistic people, where they can manage it, and there are others who want to build communities of entirely autistic people. This doesn’t seem like a problem to me, even though I wouldn’t want to live there. I don’t automatically view them as hateful or supremacist, because most of them aren’t. Some people do view them that way, though, and that is not accurate.

Moreover, there are plenty of people who think that if they hold one of those views, then they themselves must do the other things described on there. There are people who start out with a view that we are absolutely okay as we are, and work themselves up into a state of artificial hatred or superiority that they would not have worked themselves up into to begin with had they not believed that these things were all necessarily connected. There are plenty of people with more moderate viewpoints who characterize the degree of moderation or “neutrality” in their viewpoints as the only way to promote equality or love, and there are people who are drawn to embracing more “moderate” or “neutral” viewpoints in the fear that they will not be promoting equality or love unless they do so.

In America, the extreme version of views of women’s rights a hundred years ago would be considered unbearably sexist now, even by most people who are not feminists. And many of today’s views held by many people who have plenty of sexist viewpoints, would have been considered unbearably radical back then.

Whether a viewpoint is considered extreme or not depends entirely on the society it takes place in. In a society that totally devalues a group of people, saying that this group of people is valuable as they are and does not need to be prevented or changed into a different kind of people, looks like an extreme view. But in a society that more or less accepts that group of people, it’s not an extreme view at all.

Therefore, it has always seemed to me that a view should be taken on based on whether it seems to be the right view, rather than on whether or not it is extreme in the society that it’s a part of. Taking an “extreme” or a “moderate” view for its own sake, is putting yourself totally at the whim of the society you live in, and reinforcing its own structure of how views are seen.

I talked about the movie to a neighbor of mine, and she said something like “It sounds like the good guys in the movie were what people think of as the good guys in real life. But in real life there’s a third group of people, and that’s us, even though people really don’t hear about us.”

So, while I enjoy watching the X-Men, I really hope that it doesn’t reinforce too many of people’s rather polarized views of what certain beliefs mean about a person’s other beliefs. There are third, and fourth, and fifth, etc, categories, we’re not all X-Men or the Brotherhood of Mutants out here in the real world.

“If you’re watching it, you’re part of it. If you’re close enough to see it, you’re in it. There’s no line drawn dividing the two.” —Tony Carey, in a spoken-word introduction to the last song of his most recent album, which is the first in a three-part series about learning from history

He is responding to the widespread belief that there are those who do things, and those who observe, and that those who observe, are separate, and apart, and not participants. He is saying this is an illusion, that everyone is a participant, and that seeming failure to act is — whether correct in that situation or not — an action in itself, with repercussions, for better or for worse, on everyone else involved. Not a non-action.

Zilari blogged recently that blogging in public entails a certain amount of responsibility. It is not an expression coming from nowhere, sent off into nowhere, but something that is read, affecting the thoughts and actions of other people to greater and lesser extents. The Autistic Bitch from Hell concurred. And I concurred privately, although it took me awhile to organize my thoughts into these words for this post.

There’s a sense in which inaction is perceived as background, not foreground. I’ve always thought that in those tests where they see how much a person looks at the background and how much at the foreground of pictures, I would look a lot at the background. There’s a lot of detail in there that people miss, a lot of things that are at least as significant as what people are trying to draw your attention to, that influence and are influenced by the foreground.

My ability to see the background gives me certain social skills that not everyone has. While people are busy trying to deceive me through facial expressions and hand gestures that they imagine are the focus of my attention, I have often caught subtle variations in movement, rhythm, and smell that they are not controlling and that may not even be on their faces or hands. In some cases I have missed the deceptive expression entirely and gone straight to what they were trying to hide.

Not that I am perfect at this, I am not a magician, just someone with an unusual social skill, although it is not as unusual as many would think among autistics. It’s not tested for because most people wouldn’t even think to test for it, and some of the tests of reading people explicitly confound it by restricting the range of correct answers, the aspects of other people that are supposed to be read, and the role of deliberate conscious effort in warping perception.

I believe this attention to only certain aspects of a person as “foreground” also account for the fact that I’m regarded as unreadable and potentially empty — or else read completely backwards — by a large number of people, but yet there are many people who can read several accurate levels of meaning in my so-called “background” aspects. It is not that I am inherently mysterious as a personal quality, but that people don’t know what to look for.

“Background” is often seen as some combination of taken for granted, static, passive, imperceptible, uninfluential, uninfluenced, devoid of accountability, empty, neutral, and non-existent. Since it is usually the opposite, and since everyone has something that they perceive as in this category without being aware of it, this is one thing that makes it so interesting and important. And overlooked.

If we do not perceive it, it is not there. If we do not perceive the origins, there are none. If we do not perceive the effects, there are none. That is how people tend to think.

When people wanted me to look at a very specific foreground on Autism Every Day, I spent most of my time exploring the “background”.

The questions that they wanted me to ask, and answer, were about the feelings of the mothers in the film, one or two specific things they viewed as causes of those feelings, and one or two specific things they wanted me as the viewer to do as a consequence of those feelings.

Instead, I looked at things like, what were the children, non-autistic and autistic, feeling and experiencing? What size, shape, color, and style were the rooms, houses, yards, schools, parks, clothing, and cars? What aspects of their personal and cultural backgrounds really caused those mothers’ emotions to be as they were? Who would be harmed by this particular usage of those emotional reactions as propaganda? Who was left out of or sidelined by this portrayal of things? Where were the fathers? What was everyone like when they weren’t on camera? What were the real consequences of this video for autistic people? What were the subtle reactions, and non-reactions, of the people in the video? Who looked the most oblivious, the auties or the non-auties? What was left out? What could I tell from what they chose to leave in, how they chose to edit it? What, off of the video, was the status and affiliations of the mothers in the video? What would happen if some of the mothers stopped spending oodles of money on probably-unuseful therapy and oodles of energy grieving and freaking out, and used that money and energy elsewhere? What caused the mothers to view their children as unresponsive when the children were clearly responding to their environment in a great deal of ways constantly?

And so on and so forth.

In other words, I was looking at everything I wasn’t “supposed” to look at and then some. I was not doing this entirely on purpose. I was doing this because this is what I do, the same way I can’t really help looking at the so-called “background” of people’s movements rather than the “foreground” image they are projecting.

Once, I was watching a Getting the Word Out video with a non-autistic person present. I grumbled a bit about it and the person said, “But what if she really feels that way?” She was very agitated that I would question someone’s “feelings”.

The Getting the Word Out video was of course a very carefully crafted piece of propaganda, which Kathleen Seidel dismantles beautifully in her blog post about it. It was not a person’s random expression of their feelings.

But even if it was her feelings.

So?

It is many people’s honest feelings that women are inferior to men, that Jews or Muslims are inferior to Christians, that people of color are inferior to white people, and so forth. Some people will even go so far as to advocate killing people for being in any of those categories, or to have considered killing people for being in any of those categories. Some societies sanction such killing, either explicitly or tacitly.

The “feelings” that people have, do not spring out of nowhere, of course. They are learned, through countless little “background” attitudes that are not questioned. They are reinforced through several well-known cognitive loops, and through subtle and not-so-subtle propaganda (it is the nature of propaganda, like the Autism Speaks video, to be persuasive).

The “feelings” that people “express”, do not go nowhere, any more than they come from nowhere. They affect people, they affect other people’s attitudes, they may reinforce or contradict attitudes in the dominant culture. When they reinforce attitudes in the dominant culture, and the “feelings” stem from highly destructive attitudes to begin with, these are not innocent expressions of feelings. Particularly not when expressed in a method meant to be viewed or read by a national or international audience. Publishing is public, it is different from having feelings in private.

When someone publicly expresses a desire to kill someone based on a particular characteristic, uncritically, in a culture where the lives of that kind of person are already devalued, the technical term for this is hate speech. Hate speech is kind of like slander or libel, only instead of smearing the perception of the character of one person, it smears the perception of the value and worth of the lives of thousands or millions of people.

“What if a person really feels that way?” Well, then they feel that way. And? As I said before, feelings don’t come from nowhere, and they do not affect only the person having them. They do not go to nowhere either, when expressed. There is a cultural trend at the moment that says that everyone has the right to express any feeling anywhere. Rights usually go with responsibilities. If you publicly express the “feeling” of wanting to kill someone, you have a responsibility to express it in a way that won’t make it sound remotely okay, and that goes double or triple if the person you want to kill is part of an already-devalued group. Your “right” to express your despair or self-pity whenever and wherever and in whatever manner you feel like, does not trump other people’s right to be safe (which, regardless of group-therapy trends, is not the equivalent of “feeling emotionally safe”) and alive.

Nobody who is aware of something is truly a bystander. We are all part of the culture that currently contributes and responds to the devaluation of the very lives of disabled people, including autistic people. How we respond, especially publicly, to the notion of some kinds of people being more disposable than others, some murders of innocent people being more understandable than others, has a part in shaping these attitudes. Reinforcing them, or fighting them. Every one of us is part of this, whether we know it or not, whether we feel like it or not, and whether we want it or not. It’s not optional.

When someone publicly states, “I understand the despair that drove the mother to feel that way,” they have a responsibility not to simply leave it at that. There is a difference between despair and homicide. There is an enormous difference between despair, and wanting to kill one child with a devalued characteristic but staying alive only because you have another child without that characteristic. One less-worthy child, one worthy child. If you don’t point this or something like it out when you publicly identify with that mother’s “despair,” then you are effectively strengthening her voice. If you don’t heavily weight things so that your identification with that despair is drowned out by the wrongness of the act, then you are effectively strengthening her voice. It’s not enough to add a tiny sentence saying “But it was wrong,” in the midst of a flood of opposite sentences. It’s the overall tone that people will remember.

Identification with people’s feelings is a powerful thing. When you identify with certain feelings, you are less likely to view anything done by someone with those feelings as wrong. Your identification with those feelings might cause you to add your voice to the “expression” of those feelings without adding your voice to the condemnation of some of the ways those feelings are “expressed”. Your identification with those feelings might leave you more susceptible than average to clever, calculated propaganda that plays on those feelings. Your identification with those feelings might even make you hostile to anyone who says there are wrong ways and times of expressing those feelings. I don’t know how many people have claimed that I hate parents or attack parents, merely because I don’t think it is ever okay for someone to publicly, without heavy qualification, say things like “I’ve wanted to kill my child because of who she is.”

I should note, by the way, that for many of us, mere expression of the intent to kill someone “valuable” is enough for involuntary commitment as a “danger to others”. In one case, a man in South Africa was jailed for eight years merely for planning the murder of his son. I am not advocating involuntary commitment, but there is an enormous disparity when people can say these things for national or international audiences without someone at least calling Child Protective Services.

It should be noted that public dehumanization of this nature is considered the third stage of a potential genocide. “Dehumanization overcomes the normal human revulsion against murder.” -Gregory H. Stanton.

We have a responsibility to combat that dehumanization wherever possible, and that responsibility overrides any individual “right” to express one’s “feelings” all over the place. It also interests me that so many people who have had these “feelings” are so hurt by the concept that they shouldn’t “express” them everywhere, view themselves almost as being oppressed by the notion that they shouldn’t.

To anyone who feels that way, take a serious look around you. Look at how often “feelings” like yours are “expressed” right and left, with near-total impunity, while people who say “Hey, murder is wrong” are more likely in these instances to be castigated for disagreeing with these “feelings”. Look at how often the murder of a disabled person is considered okay, and the murder of a non-disabled person is not. Look at how safe non-disabled people are in these circumstances, even at times from punishment for murder, and how totally unsafe disabled people are, even from murder. And then come back and try to look all “oppressed” for us again. A lot of us won’t buy it, although I’m sure the majority of the surrounding culture will, and will give you all the sympathy and pity you ever asked for, while condemning those of us who speak out against it as trampling on your ever-important feelings. Between our lives and your feelings, I know which I’d choose.

“Did she just say what I think she said? On national television?”

My staff nodded grimly.

I was at her house, watching The Mayor of the West Side, a movie about Mark Puddington, a teen with Cornelia de Lange syndrome, and his entangled and disturbing family dynamics.

His mother was overprotective, believed she was the only person in the world who cared about him, couldn’t imagine him living without her, frequently prevented others from helping him become independent of her, and had just announced to the world that she still thinks that maybe she’d have to “take him with her” when she dies rather than allowing him to live without her.

In other words, she’d announced intent to possibly kill her son in the future. Throughout the rest of the movie, she never retracted her statement, and nobody seemed to be saying anything to her about it. I saw no involvement of Child or Adult Protective Services, nothing. I still worry about her son.

There’s love between them, but on her side of the relationship there’s something else that’s more disturbing than plain old ordinary parental love. There’s the mentality shared by animal hoarders, who believe nobody could care better for animals than they could, nobody could love animals like they do, and who consequently have too many animals to take care of, so the animals start dying. Some collectors go on to keep the corpses of the animals around, either preserved or rotting.

I am not saying that “disabled people are like non-human animals,” there. That is not my intent. What I mean is that there’s a kind of attachment that goes beyond love into a complete detachment from reality where the object of said love is concerned, whether that object is disabled, non-disabled, human, non-human, etc. I saw that kind of reality-warped attachment so strongly in the mother in that video that I still fear for her son’s safety.

In 1983, Adam Benjamin Clark was murdered. (Corrected to say: His mother’s boyfriend was convicted of the murder, not his mother. See comments for more on this.) His older sister Amber has a memorial page called Remembering Adam, which includes her account of what happened, newspaper accounts, and their father’s photo essay. I have to warn you that I’ve never been able to read it without crying.

Adam Clark’s mother tried to blame her son’s death on Cornelia de Lange Syndrome making his body fall apart. (Cornelia de Lange Syndrome, even when aspects of it become fatal, does not cause the kind of injuries Adam Clark had. The potentially fatal aspects usually have to do with internal organs like the heart or digestive system not functioning properly. Adam Clark died of crush injuries.)

I’d known about Adam Clark since long before I’d seen The Mayor of the West Side. That was one of the things that made the mother’s statement so horrifying. I knew that this sort of thing was something that really happened, and that happens to disabled people more often and with more impunity than it happens to non-disabled people. I knew that for many people, the mother on the screen would have words that went unquestioned: “It’s just her feelings. Harmless. At least she talks about them.” And I would know that were her son not disabled or some other devalued category of person, nearly everyone would question her words. She did say this. On national television. And who besides me commented? Did anyone notice?

“She’s saying it for an international audience.” This time I was not so shocked. I was watching Autism Every Day. And by now anyone who’s read the Autism Hub blogs for long knows what was said. Again, no sign of Child Protective Services.

CdLS can cause a person to be autistic, and usually has definite visible physical signs. Nobody thinks of people being cured by it, except by the usual eugenic elimination procedures. Some forms of it can kill though. Like the Rett community that Autism Diva describes in the post I just linked, the CdLS community mostly focuses on their love for their beautiful children and on how to identify them, teach them, and keep them healthy and happy. The disturbing stuff is still out there, as I mentioned above, but it is not as dominant as in the autism community. Parents of autistic children without identifiable things like CdLS or Rett’s, still hold out hope of a cure and hold massive pity-parties for their children’s mere existence, even though most of their children are not facing the potentially life-threatening consequences that children with CdLS or Rett’s are. Although some of their children do undoubtedly have things like CdLS or Rett’s that is undiagnosed, and like Autism Diva I wonder how they would have to change their approach if they found that out.

At any rate, Allison Tepper Singer also described, in a high-profile video distributed internationally, wanting to kill her daughter for being autistic, but only stopping herself because her other daughter was non-autistic. If anything ever happens to her non-autistic daughter, I fear for the autistic daughter’s safety just as I fear for Mark Puddington’s.

On May 13, just before Mother’s Day this year, three-year-old Katherine McCarron’s mother murdered her by putting a plastic bag over her head and suffocating her, for being autistic. Instead of people writing to the newspapers and the district attorney to say that autistic children need to be protected from this, most people I’ve seen have been writing to the newspapers and the district attorney have been writing to support the mother.

On May 14, Mother’s Day, in Albany, Oregon, 19-year-old Christopher DeGroot’s parents locked him inside their apartment and then set the apartment on fire. He died in the hospital. He, also, was autistic. Someone on a closed mailing list I am on, said basically, “Expect more sympathy for the two cats who survived the fire than the autistic man who didn’t.”

These are two people who will never, ever experience life on this earth, or any feelings, good or bad, again. They are gone. Everything they were or could have been has either vanished or been sent to the afterlife, but it is not here right now. These are two human beings who have been murdered. That these facts are going to be shoved into the background, to focus on the feelings of the murderers as foreground, is appalling.

The majority of support, anywhere, is going to go to the “feelings” of their murderers. I have a friend who runs the Murder of Autistics webpage, and he gets angry letters from the families of the murdered autistic people, not angry because they were murdered, but angry because he steps on the families’ “feelings” by portraying it as just as horrible as the murder of anyone else. How about showing some support for the feelings and lives that Katherine McCarron, Christopher DeGroot, and Adam Clark, will never have? Our reactions are not merely those of uninfluential, uninfluenced bystanders, we are people within a society, and our action, or inaction, will affect a lot of people. I know what my reaction will be: To bring the “background” that these people’s lives and futures have appallingly become, into the foreground of the discussion. These are innocent people, some murdered, some always in danger of murder, and the not-so-innocent are the ones most people are going to want to sympathize with here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

…in response to the people who are so frequently “reminding” me of the presence of things like institutions, and of people designated as LFA…

“Yes. I totally agree with you. I have been institutionalized, and I have been regarded as LFA, and I regard this kind of autism as a total curse. Those aspies can say what they want, but they have never been through the kind of hell that we have. Autism of this kind is a real disability, not just a difference, and I totally believe in research into prevention and cure.”

I want to know how many of them would strive, as they do now, to pull me into some other category. How many of them would still continue to say, “But you are different. You’re not like the people I’m talking about. They cannot and will never communicate even the simplest concept.”

How many of them would say, “Your end of the spectrum has agendas, the other end has needs”?

How many of them would go over every detail they either find or imagine about me with a fine-toothed comb to differentiate me from the people they claim to be representing?

Very few.

Even when a 40-something woman who identifies as being “high functioning,” posed as a 25-year-old “low functioning” man, many did not question her. Even when they knew her secret. But they would have been all over her in an instant, and probably accusing the rest of us of faking as well, if she hadn’t portrayed autism as one of the worst fates on the planet.

Meanwhile, people have looked over the lives of the rest of us for every supposedly contradictory or slightly misstated detail, while the same people have ignored glaring instances of lying, exaggeration, contradiction, and just plain inaccuracy in autistic curebies.

So for any curebies who happen to be reading this, I want you to think really honestly about this. You don’t have to tell me what you think, just think about it. If I were to claim that I was low-functioning (a category I currently reject, but have been officially put into), had experienced institutions (something that is true), described these things (along with, of course, self-injury and other “horrors of autism”) in exquisite detail, and said that on the basis of these things, I wanted a cure, I wanted autism prevention, I thought being autistic was worse than death, and so forth… would you still be telling me “You have a system of communication, therefore you are totally different than the people I want to cure/prevent”? Or would you welcome my input uncritically? What if I put in several pieces of information you knew were false, such as “I’ve never spoken in my entire life” or “I was institutionalized for ten years”? Even then, would you let it slide for the sake of my getting your message out there from an “authentic” source?

Think about those things, and think about them seriously, before you start nitpicking for details to set us apart from the people you claim to advocate for.

This is an unfortunate addition to my previous post, Temple Grandin, displaying near-textbook “HFA/AS elitism”. Because I have obtained Temple Grandin’s expanded tenth-anniversary edition of Thinking in Pictures. Here are some quotes.

Page 56:

There is concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, non-verbal individual. The development of genetic tests for autism will be extremely controversial.

Page 122:

Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.

I don’t quite know where to begin with this. It’s not just autistic people who can be good inventors, and I’ll leave that part at that.

The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-”LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.

She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.

Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz, or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.

(For anyone who has mischaracterized me as “angry” in the past, I really am angry while writing this post. But I tend to think that being told that you have no value in the world, especially by people in power, is enough to piss anyone off. Being pissed off in situations where it’s natural to be pissed off, doesn’t mean I walk around pissed off all the time. And the fact that I’m mad right now, doesn’t mean I’m wrong.)

Anya Souza is one of my heroes. No, not because she’s “overcome disability” or any of that fake-heroic crap. It’s because of the more traditional definition of hero, a person who puts themselves out there to fight for what is right. The article I Am A Person, Not a Disease describes her fight to stop the prenatal eugenocide of people with Down’s syndrome, which she herself has. I’m not sure Temple Grandin would come up with a lot of “uses” for Down’s syndrome, but Anya Souza seems clear that it’s a part of natural human variation.

Before anyone tells me that Anya Souza is high-functioning for someone with Down’s syndrome, let me tell you about David. I was locked up with David. He had Down’s syndrome and, like a disproportionate number of people with Down’s syndrome, he was also autistic. He made one sound over and over again, and was regarded as “not being in there”. But everyone but some of the staff valued him for who he was. To us, he was another person, a real person, not a mistake or a defect. To some of us, he was a friend. The problem was not that he was autistic, not that he had Down’s syndrome, and not that he was classified as low-functioning, but that he was born into a world where these things are not considered compatible with full personhood.

Let me be clear: When I talk about neurodiversity, I mean all neurodiversity. Not just the people that Temple Grandin happens to find worth in. I am fighting for a world in which there is a place for every single one of us and our value is not even questioned. I know it’s a long way off, but it’s way better than fighting for a world from the standpoint of, as Cal Montgomery puts it, “a legacy…of exclusion rather than inclusion, hierarchy rather than egalitarianism, and an imagination that was meant to open the world to certain kinds of people and then slam shut forever.”

I honestly think Temple Grandin owes an apology to the many, many autistics she has used her position as the most famous autistic person on the planet to devalue. But more than an apology, she owes us a serious attitude change. Not, mind you, just because of our “feelings”: It’s our very existence she could help eliminate in the future.

[I can now tell from the first comment that people who do not want all autistics to be of the same general type may take offense at the question. If you're not doing this, you're not the person I'm asking the question of. There are plenty of autistic people who do think that all other autistic people want to be roughly like them.]

This was the question I was asking when I wrote The Oak Manifesto. But it was not just a question directed at non-autistic people.

Non-autistic people do frequently hold the opinion that everyone must want to be like them. That, in fact, those of us who think non-autistic people do a good enough job being non-autistic but that we’d rather be autistic, are just repressed, in denial, hiding something from ourselves. Many autistic people have written and spoken eloquently about why these opinions about us are false.

But few autistic people have taken on the same opinion when held by autistic people about their own — real or perceived — category of autistic people. It is taken as a given that certain ways of being autistic are just self-evidently better.

When I was a child, my life was being directed by those around me — without knowing it, just as “what people should do” — towards the more valued category of autie. This is not how they saw it of course, not in those terms. They saw it as being all that I could be and fulfilling my potential. But I was being guided in the direction that, unchecked, leads to the “‘valuable’ and geeky even if socially inept” sort of person.

Puberty is when among other things your brain shifts around to its adult form. If my real potential lay where everyone thought it did, I suspect my brain would have shifted more in that direction. It had its own ideas about who I should be, though, and shifted in such unpredicted ways that not even I could fully recognize myself. In hindsight, though, even as a kid I saw things going very wrong that nobody else saw and I suspect the drastic shift was partly about righting those wrongs and putting me on the course I was meant to be on. Not that any of us recognized that at the time.

At any rate, it has become more apparent over time that I am who and what I am supposed to be. (In at least four dimensions, for those who view that in only three, leave out time, and assume stagnation is implied.) Right now, I am no more meant to be the stereotype of “HFA/AS” than I am meant to be non-autistic. I stand a better chance of becoming that stereotype than I do of becoming non-autistic, but so far there is little sign of either one happening.

There is an increasingly common view among autistics that I am just an aspie (I’ll use that term within this entry as a shorthand code word for that stereotype, apologies to those who use it differently) with “co-morbid conditions” making me “low-functioning” but which could be cured to release my inner aspie. That basically I am an aspie with defects. By this viewpoint, I could not possibly object to curation because it’s not autism they want to remove, just co-morbidities. Then I could be healthy and happy. Like they are.

The first thing I object to is the term co-morbid. That term implies a negative condition going along with another negative condition. It puts all conditions described, including autism (that’s the “co-” part), in a negative light and a highly medical perspective. It simply does not belong in use here.

The root of my objection, though, will be familiar to most autistic people. Autistic people are not just non-autistic people with good things taken away or bad things added. We would lose things deeper than personality if it were possible for us to become non-autistic. Non-autistic people think often, though, “All cure would mean is taking away these bad things, what’s the fuss?”

Well I simply am not an aspie stereotype with good things taken away or bad things added. If I ever became an aspie stereotype I would lose things that are deep down and important to me. Spending my time aping that stereotype (if possible at all) would be just as draining to me as passing for non-autistic is for people who can manage that.

By this I am not saying that “aspie stereotype is to my kind of autistic as non-autistic is to autistic”. I have far more in common in the areas that the word autistic has to do with, far more, with any kind of autistic person, than I do with the average non-autistic person. But there are different sorts of autistic people, too, and we do not benefit from being forced to act like each other or become each other.

By different sorts, I do not mean the traditional diagnostic guidelines. I certainly do not mean functioning level. I do not mean differences of opinion (sorry all who try to claim this, but “wanting cure” is not and will never be a true subtype of autism, it’s an opinion that crosses all subtypes, as does its opposite). I mean something deeper and harder to define and all but unrecognized by autism professionals.

I mean the reason that Joel Smith and I could instantly comprehend each other’s body language and thought patterns without having met before. I mean why Laura Tisoncik can similarly read Larry Bissonnette very easily, why Donna Williams said she and Jim Sinclair had something in common that not all auties do.

I mean why I can identify strongly with the writing and mannerisms and general patterns of several autistic people, and less with others, who might make more sense to each other than to me. These are reflective of some of the genuine similarities and differences between us, and they cross all official lines of categorization.

You can’t unwrap all these supposedly “co-morbid” conditions from me and release my inner aspie, any more than you can unwrap autism from any autistic person and release their inner non-autistic person. You can certainly look beyond your assumptions about appearances and perhaps see something far different than you initially realized, but that is not the same as us really having an inner NT or something.

Of course, you could divide me up that way. It would be really easy. You could say, “Okay, this person has symptoms of Tourette’s, catatonia, OCD, stamina issues, migraines, seizures, central pain, self-injurious behavior, and fill-in-the-blank for pages.” You could medicalize every single part of me but what you deemed the acceptable, autistic part, and you could try really hard to “fix” all those things (or in some cases imagined things) to release my inner aspie. But why are you so sure I have an inner aspie to begin with? And why are you so sure some of those things you’re trying to remove aren’t attached? (Here’s where I get told I’m advocating no medication for seizures, I bet. No.)

I’m saying the above simply because I know one of the common replies to this kind of post is “You must only be autistic and not have these other problems and just don’t understand how difficult it is, etc.” No. I just happen to view myself very differently than some other people with the same string of diagnoses and potential diagnoses. Don’t ever confuse viewpoints with diagnostics. So many people who remember that when it comes to being autistic and having viewpoints against cure, forget it when it comes to being the kind of autistic that everyone wants to turn into a different kind of autistic.

So no — to people who believe this sort of thing — I have no particular desire to be like you. No more, perhaps, than your desire to be like me, that you make so clear in your assumptions that it’s just plain better to be like you. I’m sure you’ve said similar words before, to non-autistic people. It’s also true that autistic people can convey similar concepts (words or not) to each other, as I am doing to you.

I will go through my life trying my best to be whoever I am meant to be. Who I am meant to be has often conflicted with the wishes of others, with the false constructs of proper lives that people’s minds come up with, with the values of any given society, and with many other things, not through any desire for conflict, but because of a steady and unyielding push in directions that are perhaps less traveled and less valued. This is not something I chose but it is not wrong. I am connected to the rest of the world, and I have a particular place in it, and I will do my best to be in that place, wherever it moves. The things I am saying here are not limited to me, nor am I claiming perfection or lack of struggle or hardship, merely that there are many roles to fill in the world and what people commonly think of as what people need to be doing is not always what we need to be doing.

Right now, my place is not to be an aspie stereotype, any more than it is to be a non-autistic person. Both have been expected of me at times, but neither has been all that forthcoming in the general plan of things.

Meanwhile, the way I am, the way all of us are, has a point to it. The point is not to make all autistics into copies of the ideal autistic any more than it is to make us into copies of the ideal non-autistic. We are different from each other for the same reason we are different from non-autistic people. And as usual, difference does not mean we need to be fixed or should long to be like those who think we automatically should want to be like them.

Some geneticists are busy looking at parts of chromosomes 7 and 21 for a connection to so-called regressive autism. I’m still dubious about it being that simple, given that there are many possible causes for the things being dubbed ‘regression’. But if these are truly the main genes involved in this expression, then they’re probably talking about me: I lost prior speech abilities in early childhood and have lost a number of other abilities (including the speech I’d regained) later in life.

Meanwhile, the push is getting greater to detect autistic people before we’re born, so that we don’t have to be born. Eugenic abortion — as one person put it not the right to choose whether, but the right to choose who — is already so commonplace towards people with Down’s syndrome that one activist with Down’s syndrome, Astra Milberg, has commented that she feels like one of an endangered species, and several activists with Down’s syndrome protested at an international genetic screening conference for their right to speak out against this a few years ago.

I wish I could say I felt much of anything, but I’m more sort of numb. I know exactly where things are headed, and I will work as hard as I can to stop them just as I have been all along for people who already peg some people’s “don’t even get a chance at life” meters, but I guess I got the strong freaked-out emotions out of the way when I saw where this was going years ago. It’s just… weird… to know they’re getting this close to identifying the genes, and that they’re zeroing in on subtypes that sound suspiciously like mine.