Daily Archives: June 19, 2006

“Just look at them and you’ll understand.”

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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:

an autistic woman lying on the floor playing with blocks that are lined up

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.

Me sitting on a couch

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. ;-)

Things We learned From Therapy and Doctors (by the Amorpha Household)

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The Amorpha Household, who sometimes comment here, put together a great list of things they’ve learned from their therapist. Much like Everything I Needed to Know About Life I Learned from my Behavioral Therapist, it’s a sarcastic list, and very funny. Much of this describes well the reasons I won’t have anything to do with psychiatry, at least no more than I absolutely have to (“have to” entails bureaucratic reasons, such as SSI reviews, not emotional ones).

I should note, also, that many of the reasons that I don’t trust laws that say “You only get locked up if you’re a danger to self, others, or gravely disabled,” are encompassed in here. (Besides the fact that what is done to you after you are declared those things, is not good even if you are any of those things.) Many people don’t realize how if you’re the wrong kind of person, that law gets bent and bent and bent and bent, and that the “determination” of such things is a matter of having a box checked off on a form while they’re already admitting you. I’ve gotten “danger to self” for such atrocities as picking scabs or having chapped lips that bled easily. When’s the last time you’ve been committed or tied down for absentmindedly picking a scab? It all depends on what kind of person you’re already judged to be.

This letter by Zilari for Autistic Pride Day also reminds me of it.

Anyway, I’ll shut up now and present Amorpha’s list, everything below the line is theirs (here’s a link back to their post):


Traditionally, a lot of recovery-type multiples have put lists on their pages of stuff like “Things I Learned From My Therapist.” Here’s our list of what we learned from therapy and doctors.

  • When you are really having problems, nobody believes that you are suffering. When you are all right and working things out on your own, nobody believes that you are not disturbed and suffering.
  • Refusing to commit yourself to any kind of long-term medical relationship with a therapist because s/he was a useless, arrogant, condescending, and/or uncompassionate ass does not mean you are exercising your power of choice as a consumer, it means you’re a snob who thinks they’re too good for anyone. This can be fixed with patronizing, authoritarian lectures and drugs.
  • Waiting to seek help for a problem due to bad past experiences with therapists entitles the therapist to lecture you like a child on how stupid, foolish and irresponsible you are, for not running off to the great pill dispenser the moment you start to feel the slightest bit of unease.
  • If you don’t make eye contact, it means something is wrong with you, or that you’re being dishonest. If you make eye contact, it means something is wrong with you and you’re trying too hard to pretend to be honest when you’re not.
  • If you don’t express enough emotion in your voice, it means you’re a fake who doesn’t really have any of the problems they claim to. If you express too much emotion in your voice, it means you’re a fake who doesn’t really have any of the problems they claim to.
  • The Internet is dangerous to your health. People you meet online should never be trusted and are dangerous to you– somehow more dangerous than people you meet in the 3-D world, even when you have a track record of being taken advantage of due to inability to read other people’s body language well. They might do horrible things like convince you that you’re not being helped by your doctor.
  • If you come in wearing an old shirt because it was the only clean thing, or if your jacket is a little rumpled, you are exhibiting deteriorating self-care skills, and these are symptomatic of your “condition” worsening.
  • If you get too upset and cry too much, it means you want to harm yourself and are at risk of suicide. You can never just be letting things out.
  • If you sit on the couch and look at your feet, you’re depressive. If you get up and pace, you’re manic. If you do both, you’re bipolar.
  • “Group therapy” which consists of letting the other patients verbally abuse and insult you and each other, while the supervising therapist sits around like a potted plant in the corner of the room and occasionally asks “how does that make you feel?”, is somehow supposed to be helpful. Not sure how. But it is. Take it from them.
  • “How does that make you feel?” is somehow the most important question that can ever be answered in a therapy session. Not that, if you can put into words how you feel, anything will ever actually done to help if you’re not feeling so great.
  • If you ever, ever, at any time, even consider the possibility that you might possibly be able to figure out a way to work things out without the use of drugs, this is a dangerous delusion you must be talked out of at once.
  • Anyone with a degree is qualified to speculate on the psychological health of your entire family after a five-minute description of them.
  • If you say something early on in a session, then forget later on that you said it due to the fact that the therapist’s interrogation was making you flustered and nervous and confused, this is symptomatic of a horrible mental problem, although they will never tell you what it is.
  • Always trust the doctor’s perceptions over your own, no matter how much they conflict. Theirs is the Official view of reality. They have achieved total enlightenment in earning their doctorate and now reside on a higher plane from which they view everything with total objectivity.
  • Pills are the solution. Always. If one doesn’t work, just give more of it.
  • If it does exactly the opposite of what it’s supposed to, you also need more of it somehow.
  • If you really feel you need a short term course of a particular drug and ask for it specifically, however, you are just a junkie trying to get the doctor to hand out your fix.
  • Drugs do what the doctor tells you they will, not what the label and warnings say they will. Reality is different inside the doctor’s office than out of it. For example, in the Doctor’s Office Bizarro World, Thorazine is not a high-potency neuroleptic but merely something to alleviate anxiety.
  • Do not ever expect to be given anything resembling a realistic assessment of the possible side effects of any given drug.
  • If you disagree with the doctor’s assessment of whether you need a certain drug, you are being noncompliant. Noncompliance is bad. Noncompliance means you need more drugs.
  • If you disagree with the doctor in any way, seem unsure when agreeing to let them throw more pills at you, look away, look too unhappy, look too happy, look away too much, look at them too much, etc, you are also being noncompliant.
  • Charges of noncompliance can sometimes be deflected by agreeing to let the doctor increase your dosage of something they already have you on (which isn’t doing what it’s supposed to either).
  • Sometimes doctors will decide to arbitrarily up your dosage anyway. No reason. Just don’t argue with them. They’re always right.
  • Many doctors will refuse to prescribe minor tranquilizers, warning you of the possibility of withdrawal symptoms, and will then turn around and try to shove things at you for which the withdrawal symptoms are potentially much, much worse.
  • If you ever state that you don’t need medication or help, or not the kind they’re giving you, anyway, this just means you’re too sick to know how sick you are.
  • Everything you tell the doctor about your personal history will be hacked up and mangled beyond the point of recognizability by the time it gets to your official report in your file. This can range from elimination of very important facts (such as the fact that a past episode of depression resulted from being bullied every day at school), to “re-interpretations” of things you tell them (because, being mentally ill, you can’t be trusted to interpret incidents in your own life accurately), to just making shit up out of thin air.
  • Even if your anxiety or depression stems from something perfectly understandable, such as the death or serious illness of a family member, reacting to it in a way that leaves you unable to perform some daily tasks in the same manner as before doesn’t mean you’re having a natural stress reaction; it’s a symptom of your illness.
  • In fact, any time you have any kind of extremely strong emotional reaction in response to a life event, you’re never really acting in response to that event. It’s just a by-product of a chemical imbalance in your brain.
  • Many doctors will not take “no” for an answer in response to the question of whether you ever want to hurt yourself or others. They’re determined to ferret out the “real” pathological impulses that underlie your actions.
  • Although the doctor is furiously scribbling notes the whole time you’re talking to him, he is, in fact, writing down few or none of the pertinent facts you relate to him. He’s probably writing alliterative verse about his cat or something.
  • Rule of thumb: The nicer the doctor’s office, the more horrible your experience in it is likely to be. If you see soothing, relaxing decor in the waiting room, with rugs on the walls and potted plants and dimmed lights and white noise machines and little miniature waterfalls, turn around and run. Do not walk. Do not pass Go or collect 200 dollars.
  • Never suggest that you might have self-diagnosed. This will get you nothing but smarmy, condescending sneers and “Did you read that on the Internet?”
  • If you get a “learning disability assessment,” if you are female, your chances of being diagnosed with depression or bipolar disorder increase by approximately 200%. If you are male, your chances of being diagnosed with ADD or ADHD increase by approximately 200%.
  • Do not ask to see the DSM. Do not ever suggest that you have even read it.
  • Never, ever, ever, ever, answer any of the following questions with “yes”, even if they’re true: “Do you hear voices? Do you get thoughts racing through your head? Do you feel that people are plotting against you?”
  • Never trust anyone who smiles at you in a grandfatherly manner. Say just the wrong thing and they’ll suddenly turn on you, although this is all for your own good, of course.
  • If drugs don’t help you in the way they’re supposed to, or if you ultimately find ways to get along without them, or are forced to find a way because the drugs cause too many problems, this means that you “never actually had that problem to begin with,” even if you had every single “symptom” of it or sounded exactly like someone else’s account of a worst-case scenario, the kind who “need” certain kinds of treatment.
  • And if you talk about your experience of how you learned to deal with things without drugs, you’re harming and undermining “the people who are really sick, not mildly afflicted like you were” (even if, again, their definition of someone who is “really sick” could have fit you exactly at some point in your life).
  • Or if you talk about this, you’re automatically a $cientologist. (Even though $cientologists are all batshit anyhow– more than most “mental health clients,” anyway.)
  • If the Very Scientific Studies By Experts don’t match up with your personal experiences, it’s never that the experts’ studies are the ones that are flawed and failing to account for you. If they don’t represent your experience, it’s because YOUR LIFE IS WRONG! But don’t panic! Diversity of human experience is curable. With modern medical intervention, everyone can be made to be exactly the way They say you ought to.

Plural-Specific:

  • No matter what actual, valid problems you might have, that have nothing to do with your being plural, everyone will always be much more interested in the fact of your multiplicity– no matter how many times you say it isn’t a problem for you– to the point where this overrides any chance of your actually being able to discuss the things that are real problems.
  • If you are a smoothly-functioning system and completely accepting of it, the doctor will get far too fascinated by this, and every therapy session will end up being you on display as the circus freak show.
  • Apparently, there is some nebulous “you” in here whom everyone else is a part of. As in “what part of you feels that way?”, when the person speaking mentions that someone else has an opinion that differs from theirs.
  • It’s okay to have “imaginary people in your head” as long as you never commit the horrible, horrible crime of actually thinking those people are real, or that they’re autonomous persons rather than “parts of you,” or treating them as though they have as many rights as you (the speaker).
  • And, of course, the ultimate goal, even if they are just imaginary, is to integrate them back into “you,” so you no longer need this “way of coping.”
  • If you leave therapy without having integrated, you can never go without the friendly advice of being told to “find another specialist in dissociative disorders” to help you.

(These can be redistributed, at your discretion, with credit given to Amorpha Household in the byline somewhere.)