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.”
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. ;-)