I was accompanying a friend to the doctor a couple weeks ago, and we were sitting in the waiting room, both of us using wheelchairs. We had the following conversation, or something very like it (I won’t get the details right, but this is the gist):

Her (to my staff): We need to find you a place to sit down. I forgot, you’re chair-impaired.

Staff: Actually I’m okay standing.

Her (gesturing around the waiting room): Just look at all this furniture devoted to your special needs. Hospitals must spend thousands of dollars buying chairs for the… uh… chair-challenged. They require assistive technology wherever they go.

Me: Yes, as a matter of fact, you and I can take our chairs with us, but those poor walking people all have to find places to sit. Must be such a drain on society…

Her: It’s quite a debilitating handicap. And very expensive. Well it’s true! They seem to want chairs to appear everywhere they go, and that costs a lot, all those chairs per person. It becomes quite a burden on those of us able-chaired people who don’t need them. And how you can expect any quality of life… I mean can you say that’s a life that’s worth all that money?

Me: Don’t forget lighting costs.

Her: Oh yes, lighting must cost billions of dollars for all those sighted people who can’t possibly function in the dark.

Me: Don’t forget all the signage, and so forth.

Her: Of course, you and I are both in that category, we’re both dark-impaired.

Me: There’s actually a cure for that one. Eye amputation.

Her: Oh yes, and of course the cure should be mandatory because otherwise we’d have to spend all this money accommodating them, when we could just do a little operation…

Me: I forgot, there’s also a cure for being a chair-impaired person… or is that a person with chair-impairedness? But yes, eye amputation is an option.

Her: Wasn’t there an article about that once, how to accommodate dark-impaired people?

Me: I think it was How to Talk to Sighted People…

Etc.

Now keep in mind when picturing all this, that she’s got one of those unmodulated loud autistic voices, and I happened to have my keyboard turned up to full volume. My staff apparently really enjoyed watching people’s responses, especially since both my friend and I have had people loudly talk about how much we cost, and so forth, in public, before. Most people apparently found what we were saying funny. Which is good, we were goofing around and trying to keep our minds off the fact that we were in a hospital waiting room. But there was a serious statement somewhere in there about all this “social construction of impairment” stuff.

I have been asked to blog about a particular topic: The show on “Nightline,” ABC, tonight, called “Paul in Love”. I have not been specifically asked, but asked as part of a group.

Aside from pointing out that there’s something really wrong with grown adults having their (real or otherwise) faults dissected on national television by their parents, and the fact that very few people of any type would (or should) consent to that, I can’t blog about it.

I know what I want to say, and I know that it will probably only get translated into words after the show has aired, if then. My brain and deadlines, or even demands (my own or others’) of what topic to write on, are not all that compatible.

That probably isn’t what the person asking us to write on this had in mind. It’s rarely what anyone asking me (whether alone or as part of a group) to write things has in mind. It’s quite inconvenient at times. But there it is.

I’ve encountered several areas of pressure to write, or respond, faster than is possible lately. I’m not super stressed out about it, mainly because I’m refusing to at this point even entertain the idea of conforming to that pressure. I don’t blame the people doing it, because they probably don’t know what they’re doing.

But as I am discovering, my brain and the demands of a world not designed for this particular slower wavelength of processing, are not compatible. The more I stress and force-focus, the less useful work I can get done. Occasionally it’s necessary to use that kind of forceful focus, but it comes at a pretty high price for awhile afterwards, so it has to be reserved for particular occasions. The rest of the time, I’m starting to think that force-focusing based on most demands for it is counterproductive, given that I get more done when I don’t do it, than when I do.

So meanwhile, I can tell you all about assorted inner workings of the writing process, but I can’t tell you what I think of the entire premise of the impending “Nightline” episode. And so it goes. Maybe I’ll tell you about “Nightline” tomorrow, maybe by the next time an episode like that occurs, maybe never.

But I do think I’m going to try to stop getting into situations where people want me to, or even depend on me to, Do Things Right Away, because it’s not just a matter of not wanting to, it’s a matter of really not being able to sustain that kind of thing for long enough to be useful, the majority of the time.

[Note: This is my personal response to the murder of Katherine McCarron. For my more political response, read Background, to the foreground.]

Dear Katie,

You don’t know me. You will never know me. You were murdered when you were three years old. But we have something in common: We are both autistic. Both of us have brains that work differently than usual, perceive and respond to the world differently than usual. I wish I could have known you. I bet you were a beautiful and interesting child.

These pictures are of me when I was around your age. I can remember being your age. I remember colors, smells, sounds, and the way the world seemed like a neverending kaleidoscope of experiences, many of which I didn’t understand the way typical people understand things, until later. But I was there, I was experiencing them, in my way, just as I bet you were.

When the first picture was taken, I was getting lost in the deep red-brown color of the hillside that I was facing. In the second picture, I was playing with some fish in the backyard. In the third picture, I was doing what became one of my favorite things to do for many years: Climbing trees. I sometimes had an easier time getting around in trees than I did on the ground.

I wonder if you would have liked any of the same things I’ve liked at different times in my life: Trees, books, marbles, blocks, staring sideways at the carpet, playing with my hair, running, stars, flat surfaces, taking walks, staring at everything upside-down, cats, rubbing fuzzy things on my face, getting pine nuts out of pine cones, picking blackberries, having mischievous but loving older brothers, light switches, sparkly sidewalks, rocks from the moon, typewriters, sliding tape measures, and prisms.

There have been a lot of horrible things in my life. Things that shouldn’t happen to anyone. I guess you knew about horrible things, because dying of suffocation is pretty horrible. I think I came about as close to that as I could get while surviving (physically) unscathed, on a number of occasions. But it wasn’t my mother who tried to kill me. She and I both had some really difficult times when I was growing up, including times when I was going to be taken away from her, times when she was blamed for my being autistic at all, and she had nothing like the support that exists today, but she loved me enough to fight for my life, not my death, even when people were telling her my life didn’t matter.

If you had lived, you might have experienced some of the other horrible things that exist in the world: Bullying from other children, institutionalization, being drugged into a stupor, abuse, and all the other things that are unfortunately common in the lives of autistic people. What they don’t tell you, is that all those good things I talked about, still exist, even though the bad things exist too. They don’t tell your parents that even if you never do a lot of things, there are still things you can do, still ways you can be, still things you can enjoy. And they don’t tell your parents that most people like us can do a lot more than we’re expected to.

I’ve had twenty-two more years in the world than you have, and there’s a lot of things that I still can’t do. When I was growing up, I didn’t get to see people like me doing what I am doing now, so this was a total surprise to me. I live in my own apartment. I get help with the things I’m not good at, that most people are good at. I have friends of kinds I never would have imagined or expected. I have people who care about me and understand me, who value me as who I am, not who I am not. I have a way of communicating that is fairly stable and reliable. I still have to fight for a lot of things, and life is still unbelievably hard at times, but I still sometimes have trouble believing that I’ve found some of the good things I’ve found. Not bad for someone who was ten years ago described by doctors as unsalvageable, which was their own lack of imagination in action.

There’s even a number of communities of autistic people. I don’t always get along with them, but maybe you would have. Even though I often find trouble in these communities, the people in them still understand me better than most people do, and I have some close friends there. That level of understanding was unthinkable most of my life, and so were most of the things that have happened to me since I grew up. My childhood was not remotely blissful, but adulthood has been worth it, and I wish that you could experience what this is like.

Unfortunately, the horrors that happened to you are not isolated. They almost happened to me, too, and although I didn’t always understand the significance at the time, it was still awful. The people who suffocated me laughed as I struggled, I wonder what it was like for you. The day after you died, a 19-year-old autistic man was killed by his parents in a fire. I read that he liked photography. I was his age before my life started beginning to turn into something more enjoyable than it had been in a long time. I was about 15 when people, unknowing of that future, were trying to kill me. People were undoubtedly sure you had no worthwhile future, but the only way to ensure that someone has no worthwhile future is to kill them.

Your future was totally cut off. So was the 19-year-old man’s that I just talked about. You will not have a chance to experience any more of the bad things in life, and that’s what a lot of people will want to focus on, they think your life would have been only misery and pain. But as far as I can tell, the good things outweigh the bad even in a very hard life. There are even good things that autistic people are more likely to experience, and then there are good things that are just part of the human experience in general. And I know that nothing will ever give you another chance to experience those good things, that future that people probably never expected for you, even that past in which there were surely many good aspects of your life. For that, and for the fact that neither I nor anyone else will ever get to know you, I am incredibly sad.

You could have had a wonderful and interesting life beyond anyone’s imagination for you. Now that is gone, and nothing can replace it. And you will never read these words. Your life, and your story, has ended forever.

---

This post is part of Katherine McCarron Memorial Day, by the Autism Hub. On Wednesday, May 24, people will post memorial messages about Katherine McCarron. The next day, the hub will be closed in her memory. Other participants so far:

Kevin Leitch | Dad of Cameron | Mike Stanton | Bartholomew Cubbins | Not Mercury | Mum Is Thinking | Kassiane | Autistic Bitch from Hell | Janna | Zilari | Autism Diva | Kathleen Seidel | MOM-NOS | Kristina Chew | Rose | Joseph | MothersVox | Jonathon | Aspie Dad | Lisa

Participants from outside the Hub:

Laura Cottington

“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.

I am saying this from the point of view of someone whose entire family is neurologically atypical in some (often significant) way, and the majority of my immediate family is autistic: My whole family is not autistic.

I’d begun trying to write about this before Wade Rankin of Injecting Sense wrote an entry on Autism Every Day saying:

It’s not just the child who gets autism; it’s the whole family. And the family is autistic all day, every day.

No.

I live over 3,000 miles from my parents and brothers. One of my parents is autistic, and one of my brothers is autistic. My other brother, and my mother, are not autistic, any part of the day, even if one or both are BAPpy.

No matter how involved in my life they are, they are not living my life. They are not experiencing what it is like to be autistic, they are merely experiencing, some of the time, what it is like to be in the proximity of autistic people, to love autistic people, to care for autistic people. There is a difference here.

This difference is often glossed over. People other than autistic people are said to write “first-hand accounts of autism”. Would a man dare write a “first-hand account of womanhood” because he married or raised one? Parents who are not autistic often call themselves “autistic parents,” thereby muddying the waters for those who are actually both autistic and parents. Would a man call himself a “female husband” or a “female father” just because he’d married or fathered a female?

This distinction is nonetheless important. It reflects whose voices get heard. If the non-autistic family members are viewed as having equivalent levels of experience with autism as autistic people do, then it becomes a little less important to hear from actual autistic people. After all, we can get “first-hand” accounts of autism from non-autistic people, and non-autistic people can call themselves autistic based on mere proximity with us. What would be the need for genuine autistic perspectives?

Not that non-autistic people’s perspectives are not important. But here is something Cal Montgomery says about these sorts of perspectives:

Publishers continually crank out books about the tragedy of disability, of which most may be classified as memoir by proxy: Nondisabled writers write not as representatives of their own experience (or observers of others’) but from the imagined experience of someone who has not licensed the portrayal. The best of these grapple with the limits of what the proxy can know, and struggle with the complicated responsibilities that arise when the choices seem to be either “speaking-for” or allowing the experience to go totally unrepresented. The worst, by writers who prefer spectacle to truth, invite nondisabled gawkers to a sideshow starring an alien mind in an alien life.

— Cal Montgomery, in Whose Movement Is It Anyway?

If my family had abandoned me, I would still be autistic, and some of them would not.

If my family dies, I will still be autistic, and some of them will never have been.

I believe that using “with autism” has become more than a cute little word-game in these instances. It has allowed people, particularly very word-minded people, to view “autism” as something that is not necessarily inseparable from an “autistic person.” It’s only one step from there to seeing “autism” as a thing that exists within a family, like an unwanted uncle that lives there and won’t move out, and that is no longer attached only to autistic family members, but instead to all family members. This separation of autism from autistic people is inaccurate. There is no such thing as autism. There are only autistic people. Autism is an abstractified version of a quality of autistic people, not a thing that can be possessed by, or that can possess, a person or a family. Putting autism separately from a person allows the word-bound to view it differently than it really is.

I was talking to Laura Tisoncik, a friend of mine who’s autistic, about staff. She was commenting about how they get respite hours in which other staff take over for them, to prevent them burning out. She said, “When do we get respite from burning out on them?”

The role of the caregiver (often but not always a non-autistic person — I’ll be temporarily in that role tonight, for another autistic person, who has been in that role for me at other times) tends to be, popularly, valued and celebrated as selfless and self-sacrificing. The role of the caregivee (when dealing with autism, usually an autistic person) tends to be, popularly, viewed as burdensome, an imposition on an otherwise normal life.

A caregiver can walk away. Even if they didn’t want to. Even if they never would. Even if they would not find it ethical to do so. They are capable of doing so. The possibility of escape is there.

A caregivee cannot walk away. There is no possibility of escape short of learning skills that for a lot of us are impossible.

There are entire organizations set up for the purpose of dealing with “caregiver burnout”. Which is a real problem. But it’s a recognized problem. And when it happens, people often hear things like “You can only take care of others for so long, it’s time to take care of you” and “You’re so selfless, you deserve a break” and things like that.

But people who receive assistance experience burnout too. We learn to try not to ask for more than the bare minimum of what we need. Often, “non-essential” aspects of the relationship go by the wayside as a result of the power imbalances. We are aware that, no matter how much the person frustrates us, we depend on that person for essential aspects of daily life, and therefore we cannot show it without possible penalties. We know that we can’t walk away.

If we get burned out, or even if we object to the way someone is doing something, we’re more often labeled ungrateful and selfish. “Be glad you get anything at all.”

Moreover, when “burned out” caregivers attack or even murder their caregivees, it’s often said, “Well it’s tragic, but it shows how burned out we can get.” When caregivees attack or murder our caregivers, then the whole group of people we belong to is classified as potentially dangerous, our caregivers are given more sympathy for having to put up with people like us, and all of us stand in danger of losing basic civil and human rights.

Of course, selflessness is not defined by giving, and selfishness is not defined by taking. Selfishness is about being wrapped up in your ego, and it can be just as selfish to refuse help you need, as to refuse to give help you can and should give. Selflessness is being less wrapped up in your ego, and it can be just as selfless to accept help you need, as to give help you can and should give. People can give “help” in selfish ways and receive help in selfless ways, as well as give help in selfless ways and receive help in selfish ways. Most people engage in a mix of both, not one or the other, no matter which side they’re on, and most people are on both sides of such relationships, not just one.

But the way such relationships are often portrayed, is very one-dimensional and one-sided, and uses standard views of giving as always selfless and taking as always selfish. We become burdens and ballast, they become heroes and martyrs. Even if any particular individuals don’t feel that way, that’s the stereotype that things get boiled down to. Just as, while particular individiuals may not intend their portrayal of the “whole family is autistic” to take away from autistic people’s political voice, it inevitably will.

And it is important to acknowledge, not only the power dynamics involved here, but the fact that, no, no matter how much time a non-autistic person spends with an autistic person, no matter how involved in our lives they are, no matter how much they give to us, no matter how much they love us, no matter how much they do for us, they are not autistic. They never will be autistic. But autistic people will always be autistic, with or without non-autistic people around. We are the only people who live as autistic people, all day, every day. This is more than semantics.

This is because I have seen several references lately (in lots of different places) to everything that autistic people must necessarily miss out on. The following post was made last year, and I haven’t managed to re-post it to the archives of this blog yet, so I’ve edited it a bit and posted it here:

This is difficult to write about, there are few reference points in language, and I feel pretty clumsy trying to get words around it. Please keep that in mind as you read this.

I’ve just read over on Kevin Leitch’s blog (courtesy of a commenter, not Kev) that essentially autistic people who decide we like ourselves as we are, just don’t know what we’re missing. That if we realized what experiences we were unable to have, we would jump at the chance to be non-autistic.

There have been a number of ways of critiquing this kind of thing from within disability theory, and I don’t feel up to elaborating on those right now. I agree with them for the most part, but it’s been written a lot already and it isn’t what I’m about to write about.

I wonder if people without my particular experiences (which many but not all autistic people share [link takes you to a poster by an autistic guy who had trouble conceiving of anything outside of words, which is kind of my opposite], and many but not all non-autistic people don’t share) understand what they’re missing. I am not saying they should be like me. They shouldn’t, the world needs all kinds of people and my kind is only one of those kinds. But, despite the fact that xe was writing about a physical intersex condition and not autism, a quote from Jim Sinclair is appropriate here: “It is when someone who has not even bothered to look at my world dismisses it as a barren rock. It is being called inferior to ‘someone who is human.’ It is the denigration of my experiences, my feelings, and my self. It is when my unique faculties are thrown back at me as hopeless inadequacies.”

The autism-related words used to describe me are descriptions of absence and barrenness. Absence of perceptual filtering. Absence between thought and action. Absence of certain kinds of thinking. Absence of a lot of things like that.

The trouble is, the words were created by non-autistic people for describing non-autistic experience.

How do I put into words the experience of all the stuff that fills the supposedly barren gaps between the things other people are used to and comfortable with? I don’t know. I don’t know if there are words for that. I once wrote that I was living in a valley, with green grass, rivers, and trees that don’t even grow on the mountains. But that the people living up on their mountains dismissed my valley as a wasteland because they couldn’t see it clearly from their vantage point, obscured partly by clouds and partly by distance. Some of them couldn’t even conceive of its existence, thought the valley was some fairy tale.

But that’s an analogy. Analogies only go so far.

All I can say is that between thought and action, there is lush vegetation that the mountain-dwellers can’t perceive. Between perception and conventional understanding, there is a whole different kind of understanding. There are creeks to splash in, trees to climb, patterns to perceive. I don’t know how much sense this will make to a person without these differences.

Or perhaps the dog analogy used by someone else comes back. I have had a dog who was a retriever, and a dog who was a scent hound. They enjoyed different things. The scent hound never liked retrieving sticks. The retriever never liked sniffing out trails. Was the scent hound missing out on the richness of life because she wasn’t a retriever and could not retrieve sticks? Was the retriever missing out on the richness of life because he wasn’t a scent hound and had no interest in sniffing out trails? Of course not, there’s enough richness everywhere in life for everyone to have enough, and we all have different parts of it. (And I’ve been sent to hell and back for being who I am, so that’s not a platitude and not meant to enforce some kind of “separate but equal” or sentimental “welcome to Holland” crap, I hope it will be understood as intended.)

But… yes. The richness of life. I wonder if the person talking about the richness of life, is capable of looking around and seeing shapes and colors instead of objects, and of mapping the patterns of those shapes and colors. I wonder if he understands that kind of beauty, or only the kind of beauty that comes from a certain other kind of perception, more filtered, perhaps in some ways more efficient, but irretrievably blocking out many things before they hit consciousness.

I wonder if he understands the dance of waiting for “launch windows” to line up to make actions possible, and all the things that happen while waiting on the ground for the next “launch window” to start. I wonder if he understands that with any pain coming from the jerking-around fluctuations also comes a rhythm and beauty. I wonder if any of this makes sense to him.

I don’t know what’s in the future. I may lose some of these experiences, but there would be other experiences to take their place. These experiences may become more extreme, with some of the experiences I have now lost. These two things have happened in the past, I see no reason to assume that either or both will not happen in the future. Either or both would be acceptable to me. Either or both would include a whole different dimension of the richness of life.

I know I’ve talked about a lot of negative experiences in my posts recently. The positive experiences I talk about here are part of living as the person I am, too. Being the sort of person that gets called autistic brings things that other people describe as negative or positive, but they stem from the same thing and that thing has beauty that many people can’t see.

It is not just having things taken away, it is not just compensation, these things are part and parcel of being autistic, although they differ from person to person. I’m not talking about some balancing act where a god of impartiality runs around taking things away and giving other things, that’s ridiculous and in fact ableist. But I am saying that those who are viewed by society as having things taken away from us, and our lives viewed as being essentially barren wastelands, are not shut out of the richness of life by being who we are. And the richness we experience is not some cheap romanticized copy of the richness others experience. The richness of life is there for everyone, and whether one experiences it or not is not dependent on being autistic. How one experiences it, on the other hand, may well be dependent on neurology and life experience and everything else.

Library Thing is a site that allows me to list and categorize books.

Here are some ways to view them:

• My profile
• Books by autistic people
• Books that are personally meaningful to me
• All of my books
• A list of my tags

Be aware of two things:  One, the tags are not finished yet, and many are where they should not be or are not where they should be.  Two, my ratings are highly subjective, may be based on one tiny facet of the book, and are not intended to persuade or dissuade.  (In other words, make up your own mind, but don’t accuse me of inciting censorship.  I can’t believe I have to say that, but I’ve been accused of censorship for merely stating public dislike of books before.)  Oh, and I guess there’s a third thing, which is that a lot of these books were given to me by various people, and I’ve also undoubtedly got some books unlisted because I loaned them out and forgot about them.

The BBC has a story called “Autistic Brains Never Daydream”, that discusses an experiment in which autistic brains and non-autistic brains were different ‘at rest’.

This supposedly shows that autistic people don’t daydream. I don’t know all the details of the experiment, but it involved measuring the brain activity of autistic and non-autistic people, both during a counting task, and while staring at a cross. There was a particular kind of brain activity that occurred in non-autistic people “at rest” (looking at the cross), that did not occur in autistic people “at rest”.

The question I’m asking here is, how do they know the autistic people were “at rest” while looking at the cross? When I’m looking at something, that’s not restful activity, no matter how still the something is sitting. I’ve daydreamed before, though. It seems like they could just as well have been testing the difference between when autistic and non-autistic people are likely to daydream, as the difference between whether autistic and non-autistic people daydream.

I hope the experiment was designed better than the news articles are making it look like, because if it wasn’t, I don’t know how they can claim to know all that based on the experiment as described.

The Turing Test is a test of a machine’s ability to mimic human words and conversation, and is supposedly a test of whether the machine is truly intelligent. A person converses with something, usually in text, where they can’t tell if the something is a machine or a human. If the machine can’t reliably be distinguished from the human, then the machine passes the Turing test.

I have had people try to give me Turing tests, as if I were a machine. People have tried to employ trick questions to see if I am really the person writing what I write. People have done this to me in person, where the vast majority of the time the fact that I am, mechanically, the one doing the writing, is indisputable.

When this happens, I find it insulting. I find it annoying. But I am in a situation where, at present, nobody is going to take my keyboard away if I don’t pass the Turing test. Nobody is going to deny me an ability to communicate in words. Nobody is going to force me to revert to life without a viable communication system. And if they did try, I have people on my side who would fight them to the bitter end.

Nonetheless, there have been situations that have filled me with terror. Situations in which I have been unable to communicate in words, and other people have been unable to help me communicate in words, and in which horrible, potentially life-threatening decisions were being made about me. (Remember, I have anaphylactic reactions to several neuroleptics, and neuroleptics are the drug of choice in “calming” auties.) Situations in which I was being mistreated and had no way to tell anyone for years to come. Situations in which my communication devices were denied to me.

I also know what it is like to be evaluated by outsiders. Evaluation is a nerve-wracking process, when you know that your life may depend on the outcome. It is being dissected, with little pins put in you, and people making wrong statements about your insides while listening to their instruments more than they listen to you. If you want to horrify me, schedule me for an evaluation. It’s dehumanizing and the stakes are very high.

What I stand to lose if an evaluation goes wrong, is services. The services do keep me alive. But at the moment, I don’t stand to lose a communication system if an evaluation goes wrong.

There are a number of ways in which it seems, from an unemotional standpoint, to make sense to test someone to find out if they are really communicating. Obviously, the reasoning goes, if they were really communicating, they’d cooperate fully with the test and that would be the end of it.

Have you ever had a test on which something incredibly valuable — your life, your ability to communicate — depended? Would you perform as well on such a test as you would normally? Would you flub answers? What if you lacked confidence in whatever you were being tested in? Would you seek answers in any way you could, doubt your own answers?

Human beings are not unemotional creatures. When the stakes are so high, we become terrified. When people insist on believing we are someone we are not, in ways that have bearing on those high stakes, we feel insulted. Our reactions, when terrified, offended, or insulted, are not necessarily going to be the reactions of someone who is detached from the situation.

Anne McDonald, a woman with cerebral palsy who used facilitated communication starting decades ago, was asked by a court to participate in message-passing tests. McDonald had grown up in an institution. She had learned institutional survival skills there. And she was insulted by the testing. Everything in her told her not to cooperate with the tests. She finally did cooperate, and was proven to be the one really typing, but she held out to the last second.

Many people who use alternative communication, or facilitated communication, have institutional survival skills. Many have little experience of being treated as communication partners rather than as moving objects. Many have little experience of being believed in as who they are. Many find the entire act of communicating in words quite difficult. Many have motor or perceptual skills that are significantly affected by fear. Many have little confidence in often-newfound ways of communicating in words. And many have been in situations where others have always been “right” and they have always been “wrong”.

Now imagine you’ve spent ten, twenty, thirty, or even more years of your life unable to communicate in words. And you’ve started to, and this has become really important to you. And someone gives you a test. Where tests have historically meant not only things you’ve “failed”, but things (such as IQ tests) that have made a big impact on your life. And if you fail this one, it means you will possibly never get a chance to type again.

I’d just like to know how many people, in that situation, would find it easy to pass such a test, and how many people, in that situation, would not find it tempting to look for answers from the person assisting you with taking it.

I know that it is very easy to say that all of this is easy, that I’m just grasping at straws here, that this couldn’t be what’s going on, and so forth. But I’ve been in situations where testing means a big chunk of my life could be taken away, and I’ve also been in situations where people tried to informally test whether I could really type or not. And that is how I respond to these situations, even though in all other situations I’m a fairly self-confident person with communication skills that are easily verifiable: I try to look as cooperative as I can. I balk at what would normally be very easy questions. I look around for other people’s answers, and trust them over my own. And then I go home reduced to a nervous wreck for days, feeling like I’ve just been violated, insulted, and misjudged at the same time, but aware that now a lot rests on how other people see me in a 30-minute high-stakes period, rather than how I see myself every day.

I hate that a professional view of me is thought more reliable than my view or the view of people close to me. I often repeat the “safer” view of another person who is considered more credible than I am, and sometimes I doubt my own credibility even though it has been shown to be very high. I end up thinking, in those situations, that everyone else but me must be right about me. And as I said, the rest of the time my self-confidence is pretty good. A friend has described this as, “Okay, you’re spending all this time with someone you know to be intelligent, dynamic, and interesting, and then you put her in a room with a few staff and she turns into this passive lump.”

But I rarely use physical support to type, and when I do, I can always later confirm or deny what I’ve said with obviously-independent typing.

Some people claim that after appearances before massive audiences and stuff this shouldn’t be hard — I’ll tell you, presenting or speaking in front of a large audience is hard, being dissected in high-stakes situations is several orders of magnitude harder. Using physical support during a relatively high-stakes hearing recently was also much more difficult than giving a presentation, but the people involved had already seen me type without support so my worries about their view of my ability to type turned out to be unfounded, if ever-present. I’d rather humiliate myself in front of a hostile audience than be subject to certain kinds of scrutiny in high-stakes situations.

There are of course a lot of people who manage to do the message-passing thing, and pass these sorts of tests. Sharisa Kochmeister and Anne McDonald both had to pass them for court cases, but both struggled a great deal to do so. Sandra Radisch describes telling people very specific information unknown to her facilitators. Eugene Marcus had to practice over and over again to do it, and the result of his practice made it into a book. Many people have learned to type independently to refute claims that they are not typing.

But when people don’t pass what amount to Turing tests, it should not be automatically assumed that the reason is because they are not capable of writing. This can have potentially devastating consequences, and it is partly those consequences that make it so terrifying in the first place.

Mike Stanton has written a blog entry about the latest atrocities at the Judge Rotenberg Center.

Meanwhile, I’m wondering, how do we stop things like this in general, not just at the JRC? (None of the pictures on this page, if you are wondering, are of the JRC or any other institution that is named on this page.)

The things that happen at the Judge Rotenberg Center are medieval, to put it mildly. But one thing they are not is unique. The torture of disabled children and adults is commonplace. Judge Rotenberg Center is a place that flaunts what it does, which is why it receives so much publicity. Not everywhere writes it down, not everywhere tries to justify it, lots of places just do things like this.

Things I have, personally, either experienced or been direct witness to, in places that showed no outward sign (to people who weren’t intimately involved in it) of being anything like this at all:

• • Children being forced to eat their own vomit.
  • Preferred method of transportation for autistic people being “grab them by the arm and yank hard, restrain if they resist”.
  • Deaths of disabled people within the facility dismissed as unimportant and “they were better off that way”.
  • Repeated, hard hitting that only let up when you did what they wanted.

• • Drugging you to the  point of near unconsciousness and then screaming in your ear or blasting loud music or tapes in your ears in order to prevent you from falling asleep.
  • Basketholds and other similar dangerous techniques.
  • Mechanical restraints.
  • Using mechanical restraints in ways that cut off circulation, caused near-dislocation of joints, or caused excruciating pain.
  • Taking advantage of deadly situations in order to “fail to rescue” people if they did not become compliant, in ways where nobody would be held responsible for any death that did occur.
  • Punishment for purely physical things such as movement disorders, seizures, constipation, reflux, and atypical perception.

• Using struggle or reaction to extreme provocation as excuse for abuse.
• Failing to give necessary and routine medical treatment.
• Withholding of food for punishment purposes.
• Restraining people in ways that suffocate and then laughing about it.

That is just off the top of my head. I could probably fill pages with exact descriptions.

And that is only the most physical aspects of captivity and torture, the most easily described. I would rather experience all of those combined, again, than experience some of the other things that went on.

• • Pathologizing every action or  inaction you could possibly take including thoughts and emotions.
  • Standing over you. While you are tied down and have no way of moving much of your body at all, even to turn your head. And then putting their faces right up next to yours and making the most derisive and degrading comments they can come up with. And then taunting you if you try to look through them or look away.
  • Breaking up any two or more people who showed any remote amount of affection or friendship with each other overtly. In fact, pathologizing friendship and human connection and publicly mocking people for having friends or lovers.
  • Making people beg like dogs for things like clean socks, coffee, water, or cigarettes.
  • Standing by and watching and doing nothing (or, for that matter, laughing) while sexual assault occurs.
  • Treating all of the standard, documented reactions to confinement (sitting doing nothing, trying to break all the rules, attacking your captors, etc) as if they are stupid, melodramatic, attention-seeking, naughty, and childish. In fact, taking anything suggesting the fact that you know you are a captive, as stupid, melodramatic, attention-seeking, naughty, and childish.

• • Treating you as if you are something disgusting and not really a person to begin with. This is hard to describe. It’s like people look at you as if you’re a piece of moldy vomit only with more contempt involved. Like you are something that is embarrassing to even be in the presence of, kind of gross, worthless, and definitely, definitely not a person. (This attitude being pervasive.)
  • The air in those places. It’s thick with all kinds of nasty crap. It’s hard to describe though, unless you’ve been in there.
  • The attempts to convince you that you are someone else, who has different thoughts, feelings, and motivations than you have, and the punishment if you do not accept this.
  • The requirement of accepting several contradictory and wrong ideas, either in succession or all at once, as totally valid and real.
  • The use of deliberate confusion and disorientation to get you to think things you wouldn’t normally think.

• The constant threat of violence, or death,  or “worse” kinds of incarceration, for things that for most people are normal things to do.
• “Little things” like a fire plan where, in the event of a fire, all inmates are to go to the rooms furthest from the exits, lock the door, and stay there.
• Being told or forced to do something, and then punished or humiliated for actually doing it.
• Having people work their hardest to convince you that you need, really need, everything horrible that is happening to you, that you’d die without it, or other dire consequences, and having people work their hardest to warp your mind until you will defend everything they have done to you and even try to come back for more (at which point all this hell becomes your “choice”).

Again, the list could go on, and on, and on, that’s just off the top of my head.

“As compared to my experiences at Topeka State, Menninger’s was more destructive and painful through its more subtle yet undermining techniques. In the state hospital faced with a harsh reality you had to work hard physically and otherwise to keep up with it. Menninger’s on the other hand led to a total disintegration of personality and personal autonomy.”

Treatment aimed at restructuring the personality of unwilling subjects is rightfully viewed by them as torture.

—”Sarah”, quoted in On Our Own, by Judi Chamberlin, and then Chamberlin’s response.

Sarah in that book spent nine months in a seclusion room at Topeka State. She was no stranger to brutality and torture. She understood, as most people who have not lived both do not, which environment was worse. Many people are unaware of this, and many people fight to create more places like Menninger’s, in the belief that it’s automatically better than places like Topeka State.

“That shouldn’t have happened.” Emphasis on that. They talk about regulations, oversight. I think of the glossy literature my parents read, the architecture they admired. They bragged about the place that “cared” for me. I think of the reality of that place, the powerlessness, the punishment. I cannot wish it on anyone.

—Cal Montgomery, Critic of the Dawn

I want the Judge Rotenberg Center gone, as much as anyone. But I don’t want to stop there. There’s another thing that a lot of people don’t understand, about places like this, that Laura Tisoncik sums up very well.

I’m really quite certain that there’s kind of a floor in human experience, where you can’t get much worse, you can’t get any worse. Because after a certain point, you just sort of turn off and walk through it like it’s a dream, and you can’t actually be hurt any worse than that. Yes, you can be physically damaged worse than that, but the basic core experience after you reach that particular point of hellish, remains pretty much standard.

— Laura Tisoncik, Conversation on Institutions

People can get very hung up on the details of these places. Aside from misjudging the relative badness of various places, they can get very focused on which kind of places have the most bizarre and nasty-sounding kinds of torture. They forget that past a certain point, getting more bizarre and nasty doesn’t change anything for the person experiencing it. That the experience of someone in a place with far less exotic forms of torture than the Judge Rotenberg Center, can be identical, in terms of badness, to the experience of someone at the Judge Rotenberg Center. There’s a certain point past which gradations of badness no longer exist. I’ve been to that point.

There was an iron cage, it was a one-man iron cage. And it was so small that you’d have a hard time sitting down in it. You’d have to have your knees up against your chest. And there was a person in there. And that was one of their punishments.

…

She described to me one time, which was exactly tarring somebody. They would take this black stuff and put it in their hair and on their bodies. It was just like being tarred and feathered, that’s stuff that I read about in medieval times. And she was telling me about this.

— from interviews in Lest We Forget: Spoken Histories by Partners for Community Living

If things from ‘medieval’ times could happen in the twentieth century, I wonder why so many people are resistant to believing that things that happened in the twentieth century still happen in the twenty-first. I have already lived through one period in which things that “did not happen anymore since the 1950s” were done to me, and now I am told that everything has changed since the 1990s. It keeps moving up, but things keep not changing.

My horrified friends saw the six sided wooden box (about five feet on the long edge, about eighteen inches on the end edges) opened to reveal an adolescent boy lying flat on a vinyl mat. His hands were strapped to his waist in leather wrist-to-waist restraints which were secured around the hips and with a strap between his legs. He was clad in a white long john set that was stitched together to allow no openings. His hands were wrapped in gauze and one hand was further strapped to a flat board that resembled a table tennis paddle. There was no light or objects inside the box.

The group home director described the various procedures which she indicated were necessary because of Job’s extreme self injury. In addition to the restraints, she had additional restraint procedures which were used when he was to be fed, which were per G-tube only. He had a wheelchair, but she indicated he didn’t like it, that the only place he liked to be was the box. He had long ago between withdrawn from school; she had worked with a local physician to have him withdrawn because she felt like he was extra susceptible to infections there and she needed to protect him from that. She had also petitioned the court successfully to have all of his teeth removed; this had been done one year before.

—Ruth Ryan, Real Eyes

The boy in that situation was successfully removed  from that situation, and is now doing very well, but the same group home director continues to try to invent things that are not really wrong with him.

Things this extreme really happen. But as Laura Tisoncik pointed out, it’s important to note that, by the time you get to things like that, things are long since so bad they can’t feel any worse.

I used to spend a good deal of my time being totally immobilized and tortured. But if you removed all that, it wouldn’t have made anything I was experiencing good.

Things like this are wrong. But things much less lurid and exotic and terrifying, are just as wrong, just as damaging, and just as bad. Some things much less lurid and exotic and terrifying are actually worse, from the standpoint of the people they are happening to. I am not saying this to diminish the horror of these things, which I have experienced many of, and they are horrible. I am saying it because I worry that these things, and only these things, will be focused on and removed.

I have put a lot of pictures in this entry. All of  them are pictures from institutions in which all the things I described and more have happened. I know because I’ve been at all of them. (So, by the way, tell me that my experiences are unique to a few bad apples in one particular place and I’m likely to laugh.)

Moreover, many things like this happen within the guise of “community programs” as well. Take away the building, leave the power structures intact, and all you have is a widely distributed institution, with the inmates isolated from each other.

The horrors of the Judge Rotenberg Center are not particularly unique to the Judge Rotenberg Center. The Judge Rotenberg Center is flagrant, many places using the same techniques are not. The Judge Rotenberg Center has impressively medieval-looking forms of torture, those are not the only kinds of torture that people are subjected to.

You can look at the final two pictures. Here I am in the last one, in a work program that did, yes, actually pay us. Does the place look much more beautiful than the rest of the institutions pictured? It is the worst of all of them. (It was so bad that I am still afraid to put in print, next to these pictures, that it was the worst.) None of them were good. This one was just the worst.

The first picture (on the whole page), the one that looks like an office building with palm trees, is of the place in which staff tried to kill me, by the way. It’s the same one as the later aerial photograph of the buildings arranged around a central courtyard. It’s now been converted to a nursing home. One kind of institution, into another, into another, is all that place has ever been.

No matter where you live, something like this is happening in your backyard, in your neighborhood. You may not even know some of the places you see are institutions, not all of them have signs. You will not likely see the brutality, and if you do, it will be explained. Explained as “these people have severe behaviors,” “severe this,” “severe that.” “Danger to self or others” (as if what is done to us isn’t even more dangerous than anything we could dream of doing). Explained as you don’t understand the medical reasons behind torture. Please, don’t buy that line of bullshit. Torturers lie. Torture is always done by the strong and valued, to the weak and devalued.

Everybody knew what happened, but nobody was talking about it. With the investigations that would go on that were never, never finalized. Because it was too hard. You would have the individuals with mental retardation and the person without, and of course the person with mental retardation couldn’t give you accurate information, according to what people thought, so the person that had abused, was often times exonerated.

— from interviews in Lest We Forget: Spoken Histories by Partners for Community Living

One of the worst parts of any of this, to me, is the fact that I am automatically suspect in anything I say about this, and all the supposedly wonderful, heroic, devoted, compassionate professionals have all the credibility.

I can’t count how many times I have tried to talk about this sort of thing, and been told that I have a bad attitude, any number of emotional problems, and a distorted sense of reality, and that I am somehow commiting a mighty sin, dissing all these sweet compassionate people. Guess what, once you have a bunch of sweet compassionate people try to kill you for who you are you don’t really start viewing them as all that sweet and compassionate anymore. (Describing this is not the same as “hate”, either.)

I’m very well acquainted with the fact that the rest of the world has no idea. They just have absolutely no idea how bad that is, how much it transforms one, or even what the experience is. It does transform one. Notice it provides that kind of an environment, where in order to survive, and I mean literally to survive, because there is overt and threatened violence, of which one has no defense, and this violence can come from any direction, and I mean any direction[…]

One very quickly develops a whole set of skills or lack thereof in some ways, just one ends up learning a whole bunch of ways of acting in the world that are completely unlike, they’re necessary for surviving in that kind of environment, but they’re completely unlike or irrelevant to, they don’t belong in the outside world. They’re sort of anti-skills. Take those skills out into the world and you become completely ineffective in a way. It does change one[…]

There’s, I almost want to call it a level of naïveté about what can be, in people who have not been through this. A kind of, I’m trying to describe something that I sort of know it when I see it but I don’t know… I guess many people don’t live with… I am trying to find words for concepts that… it’s a level of naïveté. A failure to understand how bad it is or can be. A failure to understand how the issues are really that of life and death, a failure to understand the importance of… yes, a failure to understand. There’s a level of unseriousness there, a level of too much faith in the system as it is now, too much misplaced faith in it. And too much, I would almost call it eagerness to try to prove or establish that they are not like these people almost. Like that these people are not them, that they’re better than people who’ve been through that and in any case those people deserve it and in any case it was good for them, and in any case, you know, and if it wasn’t good for them it was not a systemic issue. It was just, that one instance. That exception.

— Laura Tisoncik, Conversation on Institutions

At any rate, this stuff is going on. Now. Here. Wherever “here” is for you, it’s going on. Whenever “now” is for you, it’s going on. It’s not something that’s only done “over there”. It’s not something that’s only done “back then”. This is ongoing, this is everywhere. Solving the problems at the Judge Rotenberg Center is only the beginning.