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.

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

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

Group one (represented by the Brotherhood of Mutants):

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

Group two (represented by the X-Men):

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

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

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

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

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

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

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

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

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

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

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

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

In November of 1996, I was living in an institution in which a doctor explicitly told me that he wanted to kill the person I was and replace me with someone else, and that he was going to, psychologically, do exactly that to me. I was totally unaware of things like the Oklahoma City Bombings. I found out who Timothy McVeigh was by accident two years ago by finding a taped news broadcast among a pile of my parents’ videotapes I was sorting. I was very out of touch with what was going on in the outside world.

I did not know about Autism Network International, either, although it had been around for awhile by then, and put on its first conference right around the time a guy died in the facility I was in and the same doctor was telling me that his death didn’t matter. I, of course, didn’t hear about ANI until later. Dr. Brainwash wasn’t exactly going to be thrilled with the notion of autistic people being valuable as ourselves.

Another person I hadn’t heard of was Charles-Antoine Blais. Charles-Antoine Blais was a seven-year-old autistic boy in Canada. His mother took him into the bathroom, filled the tub, and then held Charles-Antoine’s head under until he drowned.

The St. John’s autism list had a long discussion about him, back then. A very long discussion. In which a woman was castigated for “forcing her opinion down people’s throats” for stating the opinion twice, in a thread with dozens of messages, that she sympathized with the autistic boy and not his mother. Some people even questioned whether she could really be the parent of an autistic child if she did not sympathize with a murderer. Some people accused her of having less empathy than an autistic person (which is supposedly, in myth, very little), and many people treated her like she was doing something awful.

This is what that mother, Tanya Stewart, said:

I want you to imagine this from the childs point of view for a moment. A scared little boy, being taken into the bathroom as mom fills the tub. Mom grabs him and forces his little head under the water. We are talking about an older child here, so he was able to put up a pretty good fight. I would say she had plenty of time to realize what she was doing and stop. How could she continue after seeing his terrified face and feeling him fight for his life?

I am really surprised at the number of you who choose to have compassion for her and not for the innocent child.

The discussion had all the elements that still happen today: Most people sympathizing with or in some way explaining or excusing the murderer. A small number of people openly opposing the murder. A slightly larger number of people practicing a feigned neutrality that ends up acting as if it sides with the majority.

But there was one quote that I wanted to repeat right now, by Mark Painter, further on in the thread:

For myself, I’d like to know what his name was. I’d like to know what he looked like. Was he echoalic? Did he imitate his mother’s every move at the dining room table? Did he flap his hands excitedly, run to the TV set, and giggle whenever they rolled the credits at the end of the program? Did he put all the other little boys in the neighborhood to shame when he climbed the jungle gym at the playground? Was he a ravenous devourer of Kraft Macaroni and Cheese? Did high-pitched sounds make him put his hands over his ears and cry? Did he own a pair of “Bert and Ernie” sneakers that he loved so much he took them to bed with him every night?

Alas, we will never know these things. Too many people think it’s more important to emphasize how miserable his mother was. OK, maybe she had it rough. But I don’t buy the argument that since she went further than any of us would, she must have had it worse than any of us. I’ll bet there are parents on this list who have been through far worse, and yet found it in their hearts to spare their child’s life.

“Don’t judge” is good spiritual advice. But the fact remains that this woman must now be judged under Canadian law. Those of you who are hoping she gets off easier than, say, Susan Smith (to use an example previously cited in this thread), are hoping, whether you realize this or not, that the law will formally recognize the proposition that the life of an autistic child is less valuable than the life of a nonautistic child. (A few of you have come perilously close to openly proclaiming this principle right here on this list.) This is not good for your own children. It is not even good for you.

This strongly resembles something I said in my memorial post to Katie McCarron:

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.

I thought, given that the newspapers were not reporting anything about who she was, that we would never know. Her grandfather, Mike McCarron, was strong enough to come forward in the midst of all this and stand up for her value, stand up for her being recognized as a person. That was something many of the people I knew in institutions did not have. That was something that Charles-Antoine Blais did not have. But Mike McCarron has told us more about Katie than I’d ever hoped to know:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

I put pictures of myself at Katie’s age in my memorial post, because there were no pictures of Katie out there, but now I have found out otherwise from Mike McCarron.

He has given people permission to use photographs of Katie, but only if they are not used in any way to lament the “lack of services” that some people blame for her death, and only if they are not used to call her a burden or paint her death as “understandable” or anything remotely close to that. Not Dead Yet, an organization that works against the idea that killing disabled people is understandable, has posted about the terms of usage of these photos on their Photos of Katie McCarron page, where the full-size photographs are also available.

Those are images of Katie McCarron.

They are images of a little girl.

They are images of a human being.

They are images of a person.

Standing up for the value of lives like ours — Katie’s, mine, and many others — can be exhausting. The level of biting hostility we get in response to saying “Murder is wrong” is astounding. But the next time I think of giving up, I am going to think of Katie and her grandfather Mike McCarron who is standing up for her, under pressure and amidst publicity, even at the same time that he is mourning a cherished granddaughter.

I am a Quaker. Quakers do not take vows or oaths. But we do speak as honestly as we can manage about what we will and will not do.

I will remember Katie. I will remember Charles-Antoine, who the world never got the chance to hear about except in pathologized terms. I will remember Jeff, Stephanie, David, Vanesa, and all the other people I left in institutions, some living, some dead, most without anyone to stand up for their value as the real people I knew them as. I will remember them with love. I will remember them with value. I will do my best to convey the fact that murdering anyone, including one of us, is an act of desecration that turns far, far, far away from love; it is taking all the beauty that goes into a person away from us forever. I will celebrate who we are and have been, and mourn who some of us will never get to become. And, like Mike McCarron, I will stand up to anyone who says otherwise in my presence. I will do all these things, not for the hatred that some accuse us of, but for the love and value of all kinds of people, those I have known and those I have not.

Conuly watched the Autism Speaks video, and posted a detailed reaction to it called In Which I Watch the Video.  This is my very short post in which I say that I liked reading her reaction.

June 18th is apparently Autistic Pride Day.

It’s come to my attention that the people who initially put it together think that there’s been some kind of collossal snub [edit:  Amy says they didn’t say “colossal snub”, but I was told they thought it was something negative towards them at any rate] on the part of autistics.org, in that we didn’t announce it last year on our front page, and Joel Smith wrote an article about his reservations towards the way some autistic people conceptualize autistic pride.

So just to clear that up:

Last year on June 18th, one of the webmasters of autistics.org was in the midst of a 3100-mile move, others were preparing for Autreat, and another was sick in bed with an infection of some sort. I can’t speak for the others, but at the time, Autistic Pride Day was barely making a blip on my personal radar screen. It was just one of a whole lot of events and such that people were talking about. And, just for more fun, we were experiencing a website outage.

As far as Joel was concerned, I’m not going to claim to read his mind, but I’m going to hazard a guess from what I know of him. Joel, like me, is very concerned about a false form of “autistic pride” that is really merely “pride for some auties at the expense of others”. The kind of “pride” that allows Temple Grandin to say that she’d rather non-speaking auties not exist, but auties like her are okay and beneficial to society.

I doubt he knew much, if anything, about who was putting on Autistic Pride Day, and the reservations were probably of a more general nature. The notion of “I hope this isn’t yet another form of disability pride that’s founded on fundamentally ableism principles” is one that tends to cross my mind when presented with any form of “disability pride”. I kno someone who was surprised to find out that among many wheelchair users, “disability pride” was actually some variant on “At least I’m not retarded.” As someone involved in several disability communities, I know that many do have ableist versions of “pride”, this is not something made up to spite a particular person.

(Unfortunately, the opinion Joel voices is one that often gets wrongly condensed into the notion of “We shouldn’t talk about our strengths,” which is not, I think, what he’s saying at all.)

So, no, nobody on autistics.org was insulting any particular person who put on Autistic Pride Day by either failing to mention it on our front page (we don’t mention everything in the world on our front page anyway), or by the article Joel wrote.

Unless, of course, anyone celebrating on Autistic Pride Day did turn out to be doing the things Joel wrote about, but given that I don’t think he knew anyone putting it on, he wasn’t talking about any particular person involved in it, and wasn’t trying to undermine the whole day. It was in fact my impression, reading the article, that he was in fact attempting to enhance Autistic Pride Day by providing discussion of what were good and bad ways to celebrate being autistic.

So as tempting as it might be to consider oneself to be under extreme attack by reading a whole lot that wasn’t said into that article and into our silence, there was no attack, extreme or otherwise, there. You’re not dealing with hostility, you’re dealing with (mostly) some combination of incapacitation, being busy, unawareness, and indifference, as well as enough experience in the autistic community to know that “autistic pride” can be done both well and badly and to desire that it be done well instead of badly.

So, again, no snubbing is or was going on here. It might be useful to make fewer assumptions, though. I find it very strange that failing to link to something would be considered an attack in the first place. If I thought that anyone who didn’t link to autistics.org was attacking us, even if I limited this to the autistic community I’d be imagining myself a lot of non-existent enemies. This aspect of things reminds me of people in the offline world who think that by failing to notice or talk to them I’m being stuck-up or rude, when really I am processing them as a bunch of moving shapes and incapable of conversational speech.

So consider this my announcement of Autistic Pride Day, and my explanation of why what some people apparently think they saw, wasn’t actually there in the first place. I don’t know a lot about Autistic Pride Day, even still, so I can’t really point out what it is or anything, but it’s out there.