My mother wrote to me a few weeks ago to make sure I knew that she had never, ever, once, thought of killing me.

It was one of those surreal moments where I sat there and thought, “If I were non-autistic, non-disabled, I doubt she’d have felt the need to reassure me of something that should have been a given. And I think a non-disabled person would have been puzzled to get such a message out of the blue. I wish I was more puzzled as to why.”

And I quickly reassured her that I knew that, and had never even considered the possibility that she wanted me dead. She’s my mother. Most mothers don’t want to kill their daughters. I cannot imagine her, or my father, wanting to kill me. This is not something that enters my thoughts.

Yes, our family had a number of very rocky years for a whole lot of reasons that I won’t get into for the privacy of everyone involved, especially since all of us by now have turned over a new leaf in our various ways. And not all of those reasons even had to do with the makeup of our family, they had to do with circumstances. But killing each other? Not even close.

Certainly, my parents were not entirely up to dealing with what society had in store for a child like me. It’s not like parents get instruction manuals for “What happens when you have a child that psychiatry wants to lock up and throw away the key.” But they fought for what they believed was right at the time, with what knowledge was available to them.

They did this even when there were threats of taking me away from them and making me a ward of the state, and even when a particular institution decided to blame my mother for my so-called “childhood schizophrenia”. (This is what they called it when my parents tried to point out I’d been autistic pretty much forever — at the time, my proctologist was the only person who would openly state the truth, possibly because he found a bunch of professionals’ heads up my ass during that exam.) This time period did not make for particularly happy times for any of us, financially or emotionally, but a few staff were the only people who ever wanted me dead for it.

And yet I’m still occasionally getting emails meant to reassure me that I’m actually wanted in the world and that they never wanted me dead, never wanted me not to have been born.

What on earth kind of message makes parents believe they actually have to reassure their own children that really, seriously, they never even once considered killing us, and that really, seriously, we were wanted?

I can only guess it’s some toxic mix of the constant stream of murders and the messages that the press and various autism charities send out about the supposed frequency and normalcy of such thoughts. This isn’t support. Anything that makes my parents, and doubtless others, question such fundamental things about their relationship to their own children, and seriously believe I might think they’d had these thoughts, is not in any way support.

And, to my parents if they end up reading this: Really, seriously, I’ve never thought that you would have wanted to kill me. That just doesn’t cross my mind when I think about you. I’m aware that you love me. Thank you for reassuring me, but please be aware that you didn’t, and don’t, have to. Nobody and nothing should ever have made you feel like you had to reassure me of those particular things. Nobody should have put you in this position.

I spent four or five years of my life forcibly drugged. Sure, some of it was technically voluntary. But here’s what they did if I showed signs of not wanting to take something:

• Told my family (and me if they bothered) a very dire future that awaited me if I didn’t take their drugs. I was either going to die, or be homeless, or a revolving door mental patient, or be institutionalized forever.
• Organized my family (after scaring them enough) to all “explain” this to me where possible, and to take things away from me if I didn’t take the drugs.
• Stuffed drugs down my throat. Literally.
• Locked me up, or if I was already locked up, locked me up even more.
• Brought me as close as they could to death and told me this was what happened to people who didn’t do what they said, to get me to take something “voluntarily”, only letting up once I took it.
• Injected drugs.
• At one point, even told my family to threaten to throw me out on the street if I didn’t take something that was (literally) poisoning me.

So, I took things dutifully after awhile.

These days, I’m seeing that these drugs, particularly the neuroleptics, are being targeted at more and more autistic people than I ever saw on them when I was on them.

And, what prompted this post, I saw a post on a message board today saying, basically, “My parents are going to force me to take Abilify. What’s it like?”

And most of the other posts went under the assumption that the person had some “behavior” that was out of control, that the person just didn’t understand, and maybe needed to ask about, so that the person would understand why all these people were just trying to help them.

No.

I had pretty much every “behavior” that these drugs are used to target in autistic people. Doesn’t make it right to force a mind-altering chemical into my brain. Doesn’t mean that the solution was to meekly approach all the people who saw me and the way I acted in such a medicalistic light, and say, “Help, what’s wrong with me, what can you see that I don’t, in all your great medical wisdom can you explain to me why you want me on this drug? Oh, I understand now. I see. Yeah. That makes sense. You know me better than I do, after all.”

But that’s the line I hear all the time. In so-called “support” groups. Pretty much anywhere where large amounts of people whose lives are medicalized and who don’t care that their lives are medicalized, or don’t know there’s any other way, gather together. They talk about themselves, the way they act, the way they think, the way they feel, in terms of symptoms. And of course since “symptoms” makes everything medical, forcing pills at people sounds almost acceptable.

It’s not acceptable.

And what someone in that situation needs isn’t just words of sympathy.

MindFreedom International (which is, to dispel any myths, not a part of $cientology in any way) is an organization built to counter psychiatry. It has its problems. Mainly that psychotherapy is not targeted as a negative thing, it’s primarily biological psychiatry that’s targeted. And in targeting biological psychiatry, a lot of people have gotten wrapped up in the dogma that there is no such thing as any neurological internal difference that might cause people to act differently, and some people there honestly believe the Refrigerator Mother theory of autism.

But.

If you need help getting out of a forced drugging situation, these are the people who will do it.

The MindFreedom Shield program is all about doing that.

Ideological differences aside, these are people who do things. They go into psych wards and assist people in trying to get out. They go to court with people. Some of their members do take drugs, but they do it voluntarily — and being told “You’ll die if you don’t” is not “voluntary”. And they will help people who are being forced into psychiatric situations they don’t want to be forced into.

If you’re being forced into taking a particular drug against your will, or even heavily coerced, try contacting them. Try finding out if there’s any member groups in your area that will help you get out of that situation. If you don’t agree with them on some particular point, fine (I disagree with them on several points, the biggest of which is that they allow psychotherapists to be in too much control of the movement and its ideas rather than crazy people), but they may still be of assistance when you need it.

I’m in the middle of writing a long post responding to the ideas in several articles I’ve just found on the topic of how psychotherapy and political activism (in these articles, specifically feminism, but has broader applications) have incompatible goals. I don’t agree with every single part of the articles, but I’m finding a lot of them say exactly what I’ve been thinking for a long time. And I can’t write the full post now because I’ve got a nasty migraine, so I’m settling for discussion of one part.

One of the most interesting comments someone made in one of them, was about something I’ve noticed happening to me a lot: Being accused simultaneously of being too emotional, and of not “opening up” enough emotionally. The author discussed this mainly in terms of social class, but acknowledged that many of the things she was describing were things that could happen on the basis of other differences.

Anyway, she said that the difference was between two different approaches to emotion. The more therapized version, she said, involved a totally intellectualized version of emotion in which, for instance, someone could calmly sit around and say something like “I have a lot of anger issues around that” and then go into a lot of “process” (a word I still don’t understand, but that I’ve heard a lot in these contexts) about it. The other version, her version, did not involve saying things like that, but did involve actually acting pissed off when pissed off. It was more about having emotions integrated into your daily life without necessarily going “Here, here’s an emotion, I’m going to dissect it and destroy it because it’s scary unless I can do that.”

Anyway, she said that this way of doing things could get her in a lot of trouble at political meetings of people who saw things in a very therapized light. She might raise her voice or use forceful language when she got mad about something, and people could then call her “too emotional” and tell her to “quit scaring people”. But then she would not be sitting around publicly describing every nuance of her internal emotional state — that is something she reserves for close friends, and still probably doesn’t do in a therapy-like way — and would thus be also regarded as “too guarded” and “not opening up enough”.

This explains a whole lot about how people react to me. Apparently the “I am nice” signals I’ve talked about, are partly signals of using the sorts of language accepted in the therapy culture, which is part of why I get seen as, well, not very nice. And as too emotional in various contexts. And so forth. And apparently the fact that I don’t self-therapize in public (or for that matter in private, although like the author I was reading there’s a lot I’ll discuss in private that I’ll never discuss in public) also contributes to the fact that I often get responses like “I know what you’re about, but you don’t let us know who you are” or “We’ve known you a long time but I don’t think any of us really know you” or “You need to learn to open up more about your feelings” and so forth. These things had always baffled me, especially since they’re often said by the same people who are super-uncomfortable with any actual display of emotion on my part, but who go on and on and on about their own emotions (in that detached sort of way) at length and in fairly non-productive ways.

So… this makes sense to me. It’s two different ways of experiencing and looking at emotions, and I’m far more into the “If I’m scared or mad I’m going to act scared or mad rather than talk pseudo-objectively about my ‘fear or anger issues'” range of things despite being heavily and forcibly therapized at one point in my life. (The forcibly therapized bit just means some echolalia along those lines will occasionally slip out.)

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.)

When I spoke about having been locked up and how awful it was, people would be very sympathetic and say a mistake had been made in my case, as I obviously wasn’t mentally ill. Even though I would explain that I had been as crazy as anyone had ever been, with all the classic signs of what is called schizophrenia, I don’t think people believed me. They didn’t understand. Yes, I had been mistreated as an individual, but what had happened to me was still happening to thousands of others.

Irit Shimrat is a Canadian activist in the mad movement, who wrote the book Call Me Crazy from which that quote is taken.

Prior to being locked up, she had believed that there was a massive worldwide conflict in which she could tell the good guys and the bad guys at a glance. She wore sunglasses because she believed that looking someone directly in the eye could kill them, and she believed she was invisible when she stole the sunglasses to use for this. God talked to her through an alarm clock. When she was locked up and put in an isolation room, she stuck her finger up her butt and wrote symbols in the wall in crap to try to unlock the door and free herself. She finally agreed to take the drugs they wanted, which didn’t stop her from being crazy at all, but did get her out of seclusion.

She eventually started thinking straight again, but it took months. Much later, when she was doing a lot of work against psychiatry, she went crazy again. As she put it:

I thought it was interesting that the first and second time I went mad, I got professional help — hospitalization and drugs — and stayed crazy for months, and the third time I got help from a friend who wasn’t scared because she’d been there herself — and it was over in a few hours.

There is something very interesting in all this that is not supposed to be mentioned, somehow: That a lot of people do better without psychiatric drugs than with them.

The classic response, so classic that it is to me a cliché, is to say, “But there are severe mental illnesses for which medication is necessary,” or else “These people did not have the real version of these illnesses.”

Note that I do not believe that “mental illness” is even an appropriate term for these experiences, because it is loaded with assumptions about the causes and nature of the experiences, that are simply not proven or true. For instance, as I am reading the text on this screen, I am sure that if you scanned my brain, you would see certain regions lighting up that are not normally lit up. Yet you would not say “These brain regions lighting up cause the text to appear on the screen.” Saying “These brain regions lighting up cause the text to appear on the screen” is exactly equivalent to what people are doing with terms like “depression” and brain scan studies. They are saying the brain spontaneously causes a disease called depression, therefore treating neurotransmitters will cause the brain to stop causing this disease, basically.

This is not to say that neurological variation doesn’t exist, but that the assumption that all things classified as “mental illness” are true diseases and truly caused by neurological variation, is incredibly suspect in many areas, including in terms of the so-called “treatments”.

But one of the most damaging aspects of this model is this:

When I say that I handle life without psychiatric drugs, it is assumed that:

1. I do not share certain experiences with people who “need” psychiatric drugs.
2. I do not share as extreme experiences as people who “need” psychiatric drugs.

Just like Irit Shimrat and the nebulous concept of “schizophrenia”, I have experienced every recorded aspect of what psychiatry calls depression.

I have not just “gotten sad,” I have felt that life has no hope and that every instant was taking a century and that soon I would find it unbearable. I have felt too bad to even cry. I have been unable to move, not because of the difficulty I have with movement ordinarily, but because I could not muster the will to move an inch. I have made serious, but fortunately clueless, attempts at suicide. I have felt like I had no mood at all, no interest in doing anything. I have felt like I am the most horrible person on the planet and deserve death to rid everyone of my presence.

I experienced those things for many years of my life. I do not now experience any of those things.

Here is the part where I am supposed to tell you about the wonderful drugs, or the wonderful electroshock that would help me. In fact, I would have made a good candidate for electroshock by psychiatric standards, because I was totally unresponsive to anti-depressants of any kind. They screwed me up several ways at a time, and did nothing to alleviate my overall mood.

And that is the part where everyone says “Well misdiagnosis occurs and that is really horrible and all but it doesn’t have anything to do with people who have real, severe depression. You did not have a real mood disorder.”

Well… no, that really sounds like a cop-out to me, a quick and easy but wrong explanation. I experienced those things because of a combination of circumstances and learned reactions to circumstances. When I changed both the circumstances and the reactions, suddenly I began to be genuinely happy (not just a mood, but an overall sense of things) for longer and longer.

This did not happen overnight, and it was not an easy “snapping my fingers and it’s gone” thing, it took years of concentrated effort, and the effort had to be in the right areas. I had made an effort in the past, but trying really hard to run north, east, or west doesn’t help when your destination is to the south. It’s not just a matter of how much effort is put in, but of whether you know where to direct that effort. Otherwise you end up exhausted and feeling just as bad as when you started.

But I’m not supposed to say any of this, because saying this supposedly relegates “depression” to “a matter of willpower” and therefore “the fault of the person”, or that “only weak people take psych drugs”. No, not really, that’s not where I’m coming from. At all.

I don’t blame anyone for being, or staying, within the experience that some people call “depression,” because I don’t think that anyone would willingly subject themselves to that. I also think there are external factors that can make such an experience far more likely, and patterns of thinking that perpetuated it are not something to be hand-waved lightly away, or else they would not cause so much suffering, the person would just wave them away themselves.

But what do I know? I couldn’t really have been “mentally ill”, or else I would have taken my drugs like a good little girl, talked all about my “debilitating mood disorder” that was a “neurobiological disease”, gone to NAMI meetings and shut up about what really made me feel better. But my experience, and the experience of Irit Shimrat, are not isolated, random experiences, but incredibly common ones. The main uniqueness in any of our stories is that we have managed to stay away from the system long enough for this to happen, not the sort of people we are intrinsically.

(To be clear: I don’t care what anyone puts into their bodies, I’m pro-choice on that matter. But I do think that there is massive persuasion going on, that tells people they “have to” put certain things in their bodies in order to feel better, and thus “informed consent” often is neither informed nor consent. Telling someone that if they do not take something, they are likely to die, is not choice, especially when it is not true and the opposite may be true.)

So if you see someone talking about how a drug made them feel worse, or talking about how they stopped being a certain way without drugs, or talking about how they accept the way they are, please don’t say, “Oh, here comes another misdiagnosis” or “This person clearly doesn’t understand the suffering involved in severe insert-psych-label-here.”

It may be that they have had all the experiences that traditionally are a part of that psych label, but bad experiences with drugs or good experiences with things that are not drugs. As far as I know, human experience is not defined by whether people having that experience respond a certain way to drugs thrown at them by a profession that really has much less clue what it’s doing than it claims to have, and that is not even a true branch of medicine to begin with.

I am tired of, on the one hand, having my life experiences categorized as a form of illness, and on the other hand, being told that I don’t actually have those experiences just because neither my mind nor body toe the line in response to pseudoscientific “treatments” of said experiences. (Oh, and please don’t call me a $cientologist for saying this, they’re just as bad as psychiatry, thanks.)

I already wrote a blog entry called When I Die. That one’s about how I want to be remembered. So this entry is about “If I am killed…”. In that event, which I really hope doesn’t happen, this is about how I want you to remember the person who killed me.

I don’t want you to blame “mental illness”. If it’s my parents, which it most likely won’t be, I don’t want you to claim that my father’s “Asperger’s” or my mother’s “bipolar” drove them to it. I don’t want you furthering the stereotype that “mental illness” or autism is an explanation or excuse for murder, by pitying the “sick” person who did this instead of condemning the act equally no matter what the person’s diagnosis.

I don’t want you to blame anyone’s desperation, either. If all the services in the world evaporate tomorrow, I don’t want to be at further risk of death than I already am from the lack of services. Saying “Desperation at lack of services made them do it” gives people the idea that this is at least a marginally, slightly acceptable act. It justifies acts like the nursing home murders in Hurricane Katrina. And if you think that you are just being compassionate, and that your “compassion” won’t harm anyone, you’re fooling yourself utterly. The more people say “Desperation made them do it,” the more risk I and everyone like me are at as soon as the going gets tough. There’s evidence that talking about these things in terms of the desperation of caregivers leads other caregivers to do things like this when they’re desperate.

I don’t want you to hate the person, but I do not want you to explain away what they did, either. The fact that I am autistic should not enter into any explanations of why the person did what they did, unless it’s meant in the exact same sense as killing me for being a lesbian. The murderer, if not already dead, will already be crafting some kind of explanation that paints them as, if not saintly, at least something close. I, and every autistic person who survives me but may not survive murder by their own “caregivers”, don’t need you helping them on that account. You don’t have to explain and excuse someone’s actions, to be compassionate, and in fact explaining and excusing their actions may be the opposite of compassion and love.

People have told me that this is black-and-white thinking, blamed the way I feel about this on my being autistic, told me how ugly it is that I think this way. No, this isn’t ugly. Murder is ugly. And no, this isn’t because I’m autistic, my views on this have been formed in part by the views of non-disabled parents believe it or not who don’t want their children put in harm’s way either. Fight for all the support systems you want, fight for all the positivity about autism you want, even do it in my name if you want, but do not ever claim that these support systems have failed my caregivers in the way that they have failed me, and do not ever claim that you are doing it because my caregivers weren’t supported enough and therefore they killed me. That insults all the people who have nothing and somehow don’t go around killing each other, and it, no matter how many disclaimers you put on it, is excusing the killing of people like me over the killing of ordinary people. If you think it won’t be used in that fashion, you are again fooling yourself.

I’m not saying this as someone who has never faced murder at the hands of a caregiver before, either. Because I have. Not once but several times. If I had died, my death would have been invisible, although it might have eventually turned up in a database like this one which includes data from several institutions I was at. You would probably not have heard of it, and it would have been an “accident” even when it was deliberate. And if I didn’t die, maybe it’s so I can tell you that some things are beyond excusing, beyond explanation, beyond anything even remotely right, and they should be treated as such. I do not hate the people who tried to kill me (they were not, by the way, family), but not for one moment do I excuse a single thing they did or explain it in terms of the burnout, desperation, and so forth that they would surely have described it in terms of.

Buy Four Sight and read the poem “Reflections from an Institution’s Graveyard” by Dave Hingsburger. Read everything else, too, but especially that. If the girl in that was a ghost, then, well, I’m some form of ghost too, only I’m alive enough to write about it, and I’ll quote:

“You thought I couldn’t
You thought I wouldn’t
But I do, I did, I will
I felt you kill
And love you didn’t.”

Murder is not love, and it’s not a single bit more explainable when it happens to a disabled person, nor a single bit more explainable when the murderer happens to have a label of mental illness. Every time anyone accepts those two things as explanations, they are doing a disservice to disabled people and to people with psychiatric labels. And these explanations are not compassionate, they’re deadly. Find some other way to show compassion, some real way. I’m with Ragged Edge on this one: Call it murder and don’t excuse it.

Why am I so adamant about this? Because I’m aware that, unlike a lot of people, I’m relatively well-positioned to be next, and I can’t afford the kind of fake “compassion” that would make that more likely.

I am going through my hard drive after moving a bunch of files from an old computer to a new computer. I may be using those files, or parts of those files, as blog entries, if I find anything sufficiently interesting.

I have a file in front of me that I must have written when fed up with autism groups online. I wrote a whole long list of things I was fed up with. Some of them are relevant only to a particular flamewar, and those won’t get repeated, but some of them are generic (and not even things that were happening in that flamewar, necessarily), and regardless of what emotional state I was in when I wrote them, they’re real when I’m calm, too.

The first thing on the list is that even in autistic-dominated groups, people frequently retain conventional prejudices about disabled people who are not autistic, or who are autistic and something else too.

This isn’t really surprising to me. I have encountered conventional prejudices about autistic people while involved in political groups for physically disabled people, people with developmental disabilities (which are usually dominated by non-autistic people), and psychiatric ex-patients. It’s not surprising (to me at least) that autistic people do the same thing as everyone else on this matter, because without direct knowledge we (anyone) a lot of times believe what we’re taught. Which is one reason that I find it really important to have a background in several of these areas, rather than just one.

Instead of going over each and every detail of the common things people believe, I’m just going to provide some websites that, if you haven’t been exposed to these ideas before (or even if you have), may be really interesting:

Disabled and Proud (ended up hunting this one down again after an autistic person told me there was no comparison between autistic and other disabled people because disability could never be a basis for pride, and I’ve heard this from more than just him)

Laura Hershey’s Articles (because some people who hate CAN still think the telethon is wonderful)

I am a person, not a disease. (because so many people say it would be okay to screen us out if we could only screen out “retarded” people)

Confessions of a Non-Compliant Patient (because autistic people tend to believe the same things about “psychiatric patients” as everyone else does)

Oral History Project (likewise)

LLF (…and likewise)

People First win freedom in Tennessee (because a mother told me once that it must have been the parents that did it, because people with intellectual disabilities couldn’t possibly do anything like this)

Self Advocates Becoming Empowered (likewise)

Not Dead Yet (because autistic people, like a lot of people, often still think they’re merely being “objective” when they say that a certain kind or level of disability reduces “quality of life” and thus reason to be alive in the first place, no matter how many scientific researchers contradict this almost in spite of themselves, no matter how many disabled people of all kinds say otherwise)

Mouth Magazine and Ragged Edge Magazine are both magazines that try not to be specific to a particular category of disabled people, although it does inevitably happen sometimes. (Be prepared for the fact that both include some people who believe the mercury moms, which is IMO a weakness in a lot of groups believing that anything that looks like a government coverup probably is.)

You may notice when going through those pages, that some people on them have a prejudiced or distorted view of us, autistic people. That’s true. It’s equally true that too many of us have a prejudiced or distorted view of them, and reading these things might make you think twice (they certainly made me think twice about some things).

elmindreda replied to my post Sordid, Anyone? with a post of her own, The Difference Slot. I am replying to that post with a post here.

Her one-slot theory of understanding difference — where people only have room to view a person as being different in one way at a time — makes a lot of sense. It explains, among other things, something I keep seeing in people’s reactions to me and my neighbor.

My neighbor and I are both autistic. We are both wheelchair users (for different reasons). We both have ongoing health problems (some same, some different). But according to local agencies, I belong to a broad category known as developmentally disabled, and she belongs to a broad category known as physically disabled.

Yesterday I was having a conversation with someone from the physical-disability agency, which provides a few services to me, and most of my neighbor’s services. My neighbor was there too. Someone remarked that the reason some things were not getting done, was because I was probably the first autistic person the staff had dealt with and they were a little intimidated by this. And that I was the only autistic client of the agency. I said “But wait a minute, my neighbor is autistic.” Although it’s in her file, they hadn’t noticed.

My neighbor, while she gets some of the patronizing crap that all disabled people get, is more often than me considered an autonomous adult. When we do things together, people assume that she comes up with all the ideas and tells me what to do, even though the exchange of ideas is more equal. People also assume that she can do all kinds of things that she can’t do, because they assume that she is entirely physically disabled and not at all cognitively disabled. When she encounters shutdown, people assume she is having a medical crisis and offer to drive her to the hospital.

People also assume that I can do all kinds of things that I can’t do, but they are often very different things. Just as it’s technically in my neighbor’s file that she’s autistic, it’s technically in my file that I’m physically disabled and have ongoing health problems. However, I am frequently expected to perform as if these things do not exist. The ongoing migraine doesn’t seem to exist to a lot of staff unless I talk about it, and when it was at its worst the fact that I was in bed and barely responding to anyone was taken as a big mystery or even a personal affront to staff. Even basic physical environmental adaptations, that were a matter of course for my neighbor, have not been suggested to me by my agency, only by my neighbor. And basic, preventable problems are not planned for because nobody seems to think about them in my case, and when they do think about them, they think mainly about the cognitive, emotional, and social ramifications, not the physical ones.

I am not considered as much of an autonomous adult, and I am not expected to have as much say in what my staff do when they come to my house. My case manager has frequently overridden my judgement and I haven’t found out until a staff person refused to carry out an instruction. It is seen as normal for staff to do things like correct my manners or instruct me on how to spend my free time.

Of course, my agency doesn’t know a lot about autism either, and statistically under-serves autistic people. So the way I am seen is not only in terms of a version of intellectual disability, but a stereotyped and inaccurate version of intellectual disability that would not and does not fit many intellectually disabled people either. This is how, for instance, seemingly on the basis of a few cognitive skills, I have been assigned to a “team” that self-admittedly has no experience with anyone with “as many support needs” as I have, despite the fact that the testing that got me into this agency’s services places me as someone with a whole lot of “support needs” based on my actual capacity to do things.

Meanwhile I have another neighbor who is autistic, but who is in the local psychiatric services agency, and most of what they appear to do is give him drugs and tell him that he only gets to live in his own place if he’s “good”. He wants help making friends, and says that the reason he is depressed is because he does not have friends, but that they just give him drugs for depression and for a few past misdiagnoses. I have a suspicion that his perseverations are treated as paranoid ideation. Big surprise.

But back to me and the first neighbor. She and I consider ourselves to have more in common than different, when it comes to autism. Certainly there are differences in expression, but to me these are largely cosmetic differences in our appearances. The reality is that she is better at doing some things than I am, and I am better at doing some things than she is. This can shift around in both of us, too, so on some days I can do a lot of things and she can do barely anything, and on some days she can do a lot of things and I can do barely anything. Many of the things she is better at have more to do with the fact that she is much older than me than anything else. We have both helped each other around the house when the other one is unable to do so.

But when people look at us, they see her as high-functioning and me as low-functioning, her as non-autistic and me as autistic, her as totally verbal (even though she has a lot of word-finding problems and sometimes can’t talk at all) and me as non-verbal (even though I can sing, meow, repeat words without meaning, and sometimes have limited functional speech), her as physically disabled and me as not (or not very) physically disabled, me as healthy and her as ill, and so forth. When the reality is that we are both autistic, both experience a fair bit of fluctuation in both cognitive and physical abilities, both are physically disabled, and both have long-term health problems. It just seems impossible for a lot of people to deal with this complexity, so they find the first pigeonhole that works and stick with it, inserting various wide gulfs between our experiences that we don’t view ourselves as having (or not having to the degree that they’re portrayed by others).

“We were talking about the way people were saying things in such a vague way, and he was telling me how someone had just told him about my asking ‘What exactly do you mean by that?’ when someone asked me something in vague and confusing terms. And… he laughed.” I was trying to explain it to my friend.

“That’s just about as funny as someone with an intellectual disability getting confused over four-syllable words is funny!” was her response.

“The worst part, though… was that I laughed too. I didn’t want to laugh. I didn’t mean to laugh. It was just…”

“Echolaughia?”

“No, it wasn’t just laughing because he was laughing. I was laughing because I was afraid not to. When I laugh around you, I feel like I’m really laughing. When I laugh around them, it’s self-defense.”

“Oh… echostaffia.”

Echostaffia is a good word for Cute Client Mode. The cure for echostaffia, my friend said, is genuine power.

Earlier today, I was reading a paper by Wolf Wolfensberger on something he calls Social Role Valorization, and how it’s in opposition to things like empowerment and self-determination. He says that it should be. That the power involved in the ideas of self-determination and empowerment is just a shallow sort of power anyway, and is power over other people, and all sorts of other excuses as to why his theory was more suitable than these other ones.

He said that there are large groups of people all over the world who are utterly powerless and utterly happy. My friend’s comment, when I was ranting about the sort of disempowerment I’d love to subject Wolfensberger to, was “Oh… there are lots of people who’ve learned echostaffia, that I’ll believe!”

I am not the sort of person who calculatedly constructs different images to show to different people. I couldn’t keep up with it. I have been told that I am remarkably consistent in my personality across all situations, whereas most people change a good deal depending on who they’re around. But there are still lines I won’t cross. And the vast majority of staff will never see some important aspects of me.

When I am around staff, I do certain things in order to survive. When I am around friends, I don’t have to do those things. Hell, when I’m around strangers, I don’t have to do as many of those things.

I learned to hide my feelings, especially negative ones. The very first day in the state hospital, I received a valuable piece of advice. Feeling frightened, abandoned, and alone, I started to cry in the day room. Another patient came and sat beside me, leaned over and whispered, “Don’t do that. They’ll think you’re depressed.” So I learned to cry only at night, in my bed, under the covers without making a sound.

My only aim during my two-month stay in the state hospital (probably the longest two months of my life) was to get out. If that meant being a good patient, if that meant playing the game, telling them what they wanted to hear, then so be it. At the same time, I was consumed with the clear conviction that there was something fundamentally wrong here. Who were these people that had taken such total control of our lives? Why were they the experts on what we should do, how we should live? Why was the ugliness, and even the brutality, of what was happening to us overlooked and ignored? Why had the world turned its back on us?

So I became a good patient outwardly, while inside I nurtured a secret rebellion that was no less real for being hidden. I used to imagine a future in which an army of former patients marched on the hospital, emptied it of patients and staff, and then burned all the buildings to the ground. In my fantasy, we joined hands and danced around this bonfire of oppression. You see, in my heart I was already a very, very bad patient!

-Judi Chamberlin, Confessions of a Non-Compliant Patient

News flash to the vast majority of staff: That ‘contented client’ of yours may be plotting revolution in her head. When we are going along with what you say, it can be more about our legitimate fear of you than the inherent wisdom and rightness of your ideas. When we laugh with you while you laugh at us, it may be because we’re afraid of what will happen if we don’t. You can build entire relationships that you consider deep and meaningful, and the relationship is actually with the actions we use to defend ourselves against you. Some of you call that connection, I call it disgusting.

You may talk about trust. But in a system that routinely harms us, trust has to be earned. You don’t earn trust by talking about how wonderful you are. You earn trust by demonstrating that you’re trustworthy. Doing, not saying. And demanding that trust, demanding that we “open up” to you or whatever your jargon tells you we must do in order to “establish a relationship” with you… that’s the surest route to never being trusted. Most of us have been hearing this our whole lives, after awhile we stop buying it.

The paper on Social Role Valorization says that being ‘protected’ is more important than having power. It talks about people who were ‘dumped’ from institutions, who ‘fiercely defend’ the power they have, while leading ‘miserable’ lives in worse material circumstances than institutions. Instead of actually learning that there are more important things than the pseudo-protection that institutions claim to offer… the author goes on to dismiss such people as essentially defective, stupid, crazy, short-sighted, and so forth. (Not to mention invoking in people’s minds the old false dichotomy of abuse vs. neglect, confinement vs. abandonment.)

One of the reasons I believe I was able to escape the role of chronic patient that had been predicted for me was that I was able to leave the surveillance and control of the mental health system when I left the state hospital. Today, that’s called “falling through the cracks.” While I agree that it’s important to help people avoid hunger and homelessness, such help must not come at too high a price. Help that comes with unwanted strings – “We’ll give you housing if you take medication,” “We’ll sign your SSI papers if you go to the day program” -is help that is paid for in imprisoned spirits and stifled dreams. We should not be surprised that some people won’t sell their souls so cheaply.

-Judi Chamberlin, Confessions of a Non-Compliant Patient

Power, real power, not whatever false-ego-power-crap Wolfensberger was reducing empowerment to, is important. It means that echostaffia and Cute Client Mode, and the pretty lies that staff construct around them, don’t have to exist. If things were really so wonderful off in staff-land, we wouldn’t have to use that mode to appease staff. And we wouldn’t be taught that this is all our problem, that if we were just more trusting or whatever, they’d be more trustworthy or whatever (or that there’s something wrong with our attitude and outlook, or…).

I hope one day to have enough power that I will not have to deal with the confusion that comes after even a brief lapse into Cute Client Mode. The difference between spending time with a friend, and spending time with staff, is striking. Also the difference between spending time with staff, and spending time afterwards alone to deal with the aftermath of all this. I can’t describe it. I just know how disgusting it is.

All those “unmotivated clients” I keep hearing about are the ones who are on a silent sit-down strike about others’ visions of what their lives should be like. When I ask professionals what it is that their clients are “unmotivated ” about, it usually turns out to be washing floors or dishes, on the one hand, or going to meaningless meetings on the other. Would you be “motivated” to reveal your deepest secrets to a stranger, for example, someone you have no reason to believe you can trust with this sensitive information? And, more important, should you be “motivated” to do so?

-Judi Chamberlin, Confessions of a Non-Compliant Patient

I would rather have power — not tons of it, just what’s necessary — than have some staff running around trying to save me from a non-valorized social role, any day. And I’d rather have power than have to deal with my entire personality being temporarily tweaked by random encounters with staff who don’t even notice when it’s happening because they already have so much power.

A recent article on $cientology and psychiatry on Salon.com. And it’s worrisome.

I have no doubt that $cientology is a dangerous cult that only fights psychiatry because they view psychiatry as competition. But having to choose, as the article depicts things, between $cientology and NAMI? That’s like choosing whether to be executed by slow freezing or slow cooking.

Interestingly, the article also mentions the efforts of Narconon, a scientology front group, to promote its pseudoscientific ideas in drug education classes for children. The article does not say that drug education is bad. It says that scientology’s approach to it is bad. Yet when scientology criticizes psychiatry, the impression you get from the article is that all such criticism is the dangerous ravings of cultists.

Take the fact that schizophrenia is represented by scientologists as not just one thing. The article says that this flies in the face of textbooks everywhere. But actually, it doesn’t. Many abnormal psychology textbooks refer to schizophrenia as “the schizophrenias” and make a point of them being more than one thing. I would go further and say that they’re not even all related things, except in the mind of Bleuler, and that this explains why things keep getting moved out of that category with changing opinion in the field. But the article presents this kind of criticism as cultic blather.

It’s a difficult position to be in, because the antipsychiatry movement has never truly been antipsychiatry. It has at various times been overrun by the professional interests of psychoanalytic psychiatrists and scientologists. The rest of us — the ones directly harmed by psychiatry — are obscured by the fame of people like L. Ron Hubbard, R. D. Laing, or Peter Breggin. Those of us who speak out against $cientology as well as psychiatry are not even noticed. I’ve even been urged by a non-$cientologist psych survivor to shut up about $cientology because they’re “our allies” in this. They’re not my allies, nor the allies of a lot of people I know.

But… of course, having been in the system, people like me are just too stupid or crazy to know what we’re talking about. Or we’ve been duped by $cientology, just like disabled people who’ve criticized the ableist aspects of euthanasia have been considered to be duped by the religious right. It couldn’t possibly be — in a lot of people’s minds — that we actually have something legitimate to say. And articles like the Salon article make it that much harder for our voices to be heard over the clash between two equally monstrous institutions.