Another mother has apparently tried to kill her disabled child, near to where Katie McCarron was murdered. Stephen Drake of Not Dead Yet has written a press release called Disability Advocates Call For Restraint and Responsibility in Murder Coverage, urging people reporting on these things not to constantly harp on the idea that parents don’t have enough support, that disabled people are just inherently hard to raise without wanting to kill us, and that the sort of parents who end up killing us are really just wonderful parents who love us.

In response to the Autism Society of Illinois’s claim that saying all this garbage is looking at the bigger picture and the context, the press release says (emphasis in the quote is mine):

No, we cannot ignore the broader context if we have a new attempted murder on our hands. Services and supports have been what they’ve been for quite awhile in Tazewell County and other parts of Illinois. Services didn’t suddenly get worse between the alleged murder of Katie McCarron and this newest incident.

We’d suggest that what has changed is a barrage of irresponsible media coverage and equally irresponsible advocacy. Researcher Dick Sobsey has documented an increase in the murders of children by their parents in Canada in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person. More space should be devoted to grieving family members than sympathetic friends of the accused killer.

The Autism Society of Illinois and the ANSWERS group should rethink their strategy as well. Mike McCarron, Katie McCarron’s grandfather, has written that he feels abandoned and betrayed by “advocates.” To him and his family, the parade of “horror stories” about autism are offensive and painful. These groups need to ask just for whom they are supposed to be advocating. Is it the grieving McCarron family? They don’t feel supported. Is it children like Katie? Then why do they blame the victim? Or is it Karen McCarron, the alleged killer?

I agree completely with this. I have never ignored context, but I simply don’t think that the context of murders like this is a murderer-serving combination of the worst myths about raising a disabled child and the worst myths about so-called mental illness. I’ve read some of that research of Dick Sobsey’s, but when I bring it up, people are unduly incredulous. But really. When you make things like this sound even remotely okay, understandable, or excusable, what you get, is more people doing it. If you don’t want more people to do things like this, you take your campaigns for better services and whatever else you’re looking for, and you go off and do them somewhere else, in a way where they cannot even be mistaken for standing on the backs of murdered disabled people.

By the way, it’s been confirmed in court records that the little girl in question was given an overdose of pills, to “make her go to sleep and never wake up”. In that article, you can begin to see the “What loving parents, can’t imagine why they’d do it, but it’s really really hard to have one of Those People as a child” angle starting already. Please don’t do anything to perpetuate the hate speech.

A recent blog entry and its responses have shown one of those strange perceptual ambiguities in other people that autistic people frequently run up against. It seems that there are two ways in which many aspects of autistic people’s appearance can be taken. I’ve often wondered if this is why people flip so rapidly back and forth between calling me “Hey retard” and calling me a “genius,” that both stereotypes involve roughly the same physical appearance, interpreted two different ways.

My last blog entry on eyeballs focused on my reaction to other people’s eyeballs. This blog entry on eyeballs focuses on other people’s reaction to my eyeballs.

I’d commented that Erik Nanstiel called the look in my eyes a blank stare. Other people commented that I appeared pensive, lost in thought, or thoughtful. I don’t actually think that either one of these says anything about my mental state at the time that people are saying them, but these are not new concepts to me. Like everything else, there are two fairly extreme reactions my eyes get.

When I was first born, people said I had owl eyes, that looked “deep” and made them wonder what was behind them. (I have very large eyes, I’m not sure if that’s part of it or not.) When I was a bit older, before I understood language, but when I was certainly recording sensations that I would later understand as language, I often heard people describe my eyes as “thoughtful”. When I was old enough to understand, people often made the same sorts of comments about my eyes: Thoughtful, deep, spiritual (what on earth “spiritual” eyes look like are anyone’s guess, mind you), and other adjectives that seemed to mean there was some kind of depth of thought (or that I was “thinking” rather that perceiving anything) that was visible by looking at my eyes.

The same eyes, at the same times, have been described in a completely opposite light. People have said that they look blank, like there’s nobody home. Someone once tried to make eye contact with me, because she thought she could read people’s mental states by looking them in the eye, and broke off because she said the total emptiness in my eyes was too scary. She was shaking. People have told each other in my presence that all they had to do was look at my eyes to know that there really wasn’t anybody “in there”. In fact people have used the look in my eyes to wonder whether I was even alive or not. And, of course, the Nanstiels of the world have already registered their comments with words like lonely and vacant.

Now, these are the same eyeballs we’re talking about here. These are not two separate sets of eyeballs, nor, as apparent from the reactions to the same sets of photographs, two separate times that people are looking at these eyeballs. I’ll break down some of the ways in which my eyes (and most of these are things that are true of many autistic people) actually differ from other people’s eyes in appearance.

In actual physical structure, my eyes are much larger (particularly in the sideways direction) than most people’s eyes, and at times I’ve also had eyelashes that enhance that particular appearance. This probably calls people’s attention to them to begin with.

My pupils are often more dilated than they’d be expected to be under any particular lighting conditions. When the rest of my body freezes, sometimes my pupils also freeze in size at very large and don’t respond to light. (These things have variously been interpreted as brain damage, seizures, intoxication, unconsciousness, and death, when people have commented on them. I’m sure there are assorted ways in which they unconsciously influence people’s perception of me as well.)

My eyes have never tracked objects in a typical way. I’m not sure how they do track them, but this has been medically noted since infancy and reconfirmed several times. I suspect that people who look at eyeballs pick up on this in some fashion, even if subtly.

Sometimes my eyes do not move at all regardless of stimulus. Sometimes they just don’t seem to move in any particular response to the stimuli that are being presented. Sometimes they move rapidly and involuntarily all over the place.

My eyes don’t always look symmetrical: Either the lid on one closes more than the other, or they point different directions. (I don’t notice or feel this.)

I don’t generally look right at people’s eyes if I can help it.

I usually use my eyes to look at things with, not to deliberately communicate information.

What I perceive visually doesn’t seem to be what other people perceive. Unless I deliberately look at things (and even sometimes when I try), I don’t see “Here is a bunch of named, distinct objects.” I see a whole lot of patterns, shapes, colors, and so forth. While I have no idea exactly what the difference in appearance is, I suspect that people who do automatically perceive objects in a typical way will move their eyes over them in a different way than I do.

Similarly, I don’t think I always point my eyes at things to look at them. At least, I seem to be able to shift my visual focus without shifting my gaze at all, over a fairly wide range. I’m sure this also leads to differences in where and whether I move my eyes.

When I’m using some other sense, my eyes are of course in standby mode, or picking up information without telling me about it yet.

I don’t always have a lot of facial expression, at least not the typical expressions that people look for. I have often suspected that people’s impression of eyes having an expression of their own, is partly a result of the face around the eyes. My face has one main expression, that it’s in the majority of the time, and it changes into other expressions for much briefer periods of time, and possibly more subtly, than non-autistic people’s faces usually do. (It also, like my eyes, does a bunch of involuntary movement at times that has nothing to do with my mood or intentions.)

I suspect that the combination of all of the above (most of which are common in autistic people, not specific to me, and some of which are probably also common in blind people) causes a general impression of difference from the norm, and people’s assumptions determine how that difference is interpreted.

The thing is, I’m not particularly lost in thought in any of those pictures, any more than I’m particularly vacant. In some of the pictures, I’m even very definitely watching the camera, but when I look at the pictures, my eyes aren’t pointed at it (in some other pictures, my eyes are pointed straight at the camera and I’m not looking at it). It’s certainly usually better for me to be thought of as “thoughtful-looking” than “not there at all,” but I don’t think either one has anything to do with what I’m actually doing or thinking. I am pretty sure I look the same way when I’m very intently carrying on a conversation with someone, focused on wholly external events, watching the person who thinks I’m thinking about something else, or other things like that.

This does seem to be one more area where there’s an appearance of an autistic person that is different from a typical appearance, and a lot more is read into it than there actually is. As far as I know, the above eyeball facts are what are actually likely to be going on at any given time. Whether I appear deep or vacant, thoughtful or incapable of thought, based on that, has very little to do with whatever’s going on in my head (seems to have more to do with whatever’s going on in everyone else’s).

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. ;-)

It’s Autistic Pride Day, and I’d planned to have some kind of nifty post, but I’m exhausted, so I’m just going to announce something. (Just recently I made three or four posts in a day, now I am struggling to make one, go figure.)

Last week I got called kind of at the last minute to do an interview with NPR. Jim Sinclair and Michael John Carley were also interviewed, and the reporter I think went to a GRASP meeting. They keep moving the projected time for airing around, but right now, it’s something like “Tuesday, Wednesday or Thursday of this week, on All Things Considered, or else next week sometime, but we don’t really know yet so this is very tentative.” They’d had two separate tentative dates on which they’d been going to put it on Morning Edition, so I can vouch for the tentative part. Right now they’re trying for All Things Considered.

But the theme of the show is autistic pride, apparently.

I hope I answered the questions well enough. A lot of them had very complicated answers and we were on a short time limit. Also, the reporter asked a few more biographical questions than I was comfortable with, although surprisingly I was able towards the end of those to say “Can we talk about my views, not my life, people can read my blog to find out more of the biographical stuff.”

I am very interested to hear how it sounds with all the interviews put together.

Anyway, what I’m likely to do, is once it airs, I’m likely to try to answer the questions in more detail on my blog, if I end up thinking that what I said was too un-nuanced or something. It was really difficult because it seemed to jump around a lot between things like “What’s wrong with cure?” and “Are there any autistic strengths?” (then “Give examples”) and of course the ever-impossible-to-give-a-short-answer-to “When did you learn to type?” (which I think was the one where I was finally able to articulate my fed-up-ness with the autobiography thing).

It got really confusing when he asked about “Is there an autistic community?” and I said “Actually there’s several,” and then I think he thought I was talking about subtypes of autism, when I was talking about social groupings of autistic people, and then there were lots of sidetracked sorts of questions on that. I hope the editors focus more on views than on my life.

But I think that contributing to a radio broadcast about autistic pride is probably a decent contribution to Autistic Pride Day, which is good, because I’m too exhausted to contribute much else unless I get a sudden burst of energy.

I haven’t gotten very far in Exploring Experiences of Advocacy by People with Learning Disabilities: Testimonies of Resistance, (edited by Duncan Mitchell, Rannveig Traustadóttir, Rohhs Chapman, Louise Townson, Nigel Ingham, and Sue Ledger) but I’ve happened upon a very familiar institutional mode of communication and resistance: Singing.

And this is yet another form of self-advocacy that is not as recognized as formal self-advocacy. I’m sure it’s been going on since anyone’s been locked up anywhere. Too often self-advocacy is equated with formal groups, I’ve seen self-advocacy since I’ve seen people struggling for autonomy and a sense of humanity. It’s just… not always as pretty and tidy, I suppose is one way of describing the difference. But there’s nothing at all pretty and tidy about the situations a lot of us find ourselves in.

They have some great institution songs in there. Some generally passed around, some very much based on other songs, some composed in isolation rooms (so we weren’t the only ones who did that…), etc.

This one is to the tune of ‘Clementine’ or ‘Build a Bonfire’:

Come to Barlow
Come to Barlow
We will find it very nice
If it wasn’t for the nurses
We would live in paradise

Build a bonfire
Build a bonfire
Put the nurses at the top
Put the charge hands in the middle
And we’ll burn the bloomin’ lot

The following was written by Doris Thorne while confined to an isolation room for ‘violence’ (she was institutionalized for thirty years):

At one o’clock in the morning
I was dancing on the floor
Singing ‘Mummy, Daddy, take me home
From this convalescent home!
I’ve been here for a year or two
Now I want to be with you’
Goodbye all the nurses!
Goodbye all the nurses!
Goodbye all the nurses!
And jolly good riddance to you!

It’s really hard to describe how doing things like that are vital in places like that. The penalties for singing things like that can be pretty severe. But people found ways to do it, out loud or in our heads, because that’s what people did, that’s one way people resisted captivity.

So I’m very happy to see that someone is collecting these songs, but sad to see that one person who knew most of the songs for one institution has died. These are songs that need to be collected. I’ve heard a lot of variants on them myself. They’re important.

And I remember Birger Sellin’s words “…A song for mute autistics to sing in institutions and madhouses. Nails in forked branches are the instruments. I am singing the song from deep down in hell I am calling. Out to all the silent people of the world. Make this song your song. Thaw out the icy walls. Make sure you aren’t thrown out. We will be a new generation of mute people. A whole crowd of us singing new songs. Songs such as speaking people have never heard. […] And people won’t be able to shut their ears to our singing…” (from I don’t want to be inside me anymore)

One of the institution songs I wrote (I think the tune is a pop tune or something, but I don’t remember what song it comes from), directed, of course, at staff, who did not like our singing (no matter what we sang). There are a lot of possible verses (I end up with a few different ones every time it composes itself), but these are the ones I remember:

You cannot hear this song
You think you know
But you are wrong
This song is under every song we sing

It bugs you and you don’t know why
It nags and nags
And so you try
To shut us up, but you can’t do a thing

We sing about your worst of fears
You shut one down
The next appears
You run and run but you can never hide

One day, we’ll destroy this place
And it will go
Without a trace
Demolished by the knowledge here inside

You cannot hear this song
You think you know
But you are wrong
This song is under every song we sing

It bugs you and you don’t know why
It nags and nags
And so you try
To shut us up, but you can’t do a thing

And people won’t be able to shut their ears to our singing.

“I can understand how you feel,” said the staff person as she was busy strapping me to a bed, and I was busy struggling. “During our trainings, we had to get strapped down for five minutes. It was really scary.” I think this was intended to calm me down. Needless to say it didn’t.

Disability simulations have long been viewed by the disability community as inaccurate and damaging, promoting horrible views of disability that don’t match actually being disabled.  I would argue that a reverse effect is true with disability-torture simulations:  People get an idea that it’s much better than it really is.  The only way someone could understand how that would feel, would be this:

Without any warning, to have someone break into their home and find them (or find them taking a walk, or pull over their car, or get them at work, etc), grab them, subdue any struggling, and strap them to a board, where they are then put into a van. The van drives to a place with many, many locks on the doors. They are “admitted” and not given a chance to speak for themselves, and when they do speak, whatever they say is treated as nonsense or meaningless. They are told what to do at all hours of the day, their every movement, even potentially eye movement, is pathologized, and they are made to witness other bewildered people like them being tortured, especially if the other people fight back or stop responding to their environment the way their captors want them to. Punish all possible responses to the environment, and punish responses to punishment.

Either at random during the course of the day, or as soon as they do something that appears “non-compliant,” have ten people jump on top of them, pin them to the ground, and then carry them into a little room with straps all over the bed, and then strap them down. Tell them they will not get out of the little room until they finish struggling and crying out. Tell them they may never get out of the place at all until they show signs of believing that who they are is sick and that in order to get well they must become or at least strongly emulate something they will never be, and above all stop reacting to confinement as confinement. If they begin fighting for breath, tell them that if they can struggle that much, they can breathe just fine. Tell them they’ll be out in certain periods of time, and then extend those periods arbitrarily. Tell them “You’ll be out in ten minutes,” and then wait four hours. If they ask why it’s taken four hours, tell them “Oh, you’re not quiet, that’ll be another ten minutes.” Repeat for days. Contradict everything they see as reality, get them convinced that nothing they perceive is real is actually real. Shame them for their ordinary acts of defiance in these circumstances, tell them that it must just be for attention because obviously resisting is pointless.

That is a simulation that would truly mimic the effects of institutionalization, and give the entire context in which restraint is experienced. Simply strapping someone to a bed in a controlled exercise entirely among staff is not the same and will never be the same. Of course, the simulation I describe above would be considered unethical. Which makes me really wonder why it becomes “ethical” when it’s done to people who aren’t staff.

On Kevin Leitch’s blog, a staff person at the Judge Rotenberg Center is talking about how they’ve tried the skin shock device on themselves. This apparently is a point in favor of the ethics of using it.

However, that’s not a real simulation either. Here’s the real simulation:

Go through the entire above scenario, preferably several times. If the person survives, transfer them to a new location. In that location, have someone strap a device to their bodies, above any protests of theirs if necessary. Any time they do some particular action, zap them with said device. If they don’t get it, zap them harder. Periodically, tie them down and tell them they’ll be zapped several times within the next hour, but they won’t know when. Let them know that they’ll be there, and be getting zapped, at least until they stop whatever the undesired behaviors are. Be sure to be fairly arbitrary, at times, about which behaviors are prohibited and zap-worthy. Do not permit them to take the device off. For extra bonus points, talk to them in a foreign language that they have no knowledge of any languages even related to it.

Until someone goes through that simulation, especially without even being told that it’s only a simulation, I’m not going to trust a word they say about knowing what it’s like to receive strong aversives. It’s like saying that you understand the sleep deprivation involved in formal torture situations because you’ve been sleep-deprived while studying for tests. Just… no. Not even close.