Hey, watch it, that’s attached!

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I have posted before about the idea of cure, enough to have a whole category for it. But I’ve usually addressed it from an autistic-centric perspective. Right now, after seeing that a new disability blogging event is dealing with the topic of The Cure I want to look at the implications of cure in a broader sense.

The Impact of Cure On My Body

I am going to take cureto refer to removal of all things that have been defined by the medical profession, about my body, as disabilities, in the individual, medical sense that medical people make it. Some of the things I am about to describe may not sound like they are out of the ordinary. They aren’t. But at some point along the line, they have, in my life, become medicalized. For instance, certain particular genes generate things considered (in the medical/individual model of disability) disabling, but also a number of other things that taken alone would be ordinary. Since all those traits stem from the same genes, I have to conclude that they’d have to go as well, even the harmless or relatively ordinary bits. Cure, after all, does not pick and choose, it’s about removing all traces of the thing regarded as “a disability” medically.

So what does that mean for my body? (Note: Mine in particular.)

It means replacing perception of the world with mirages in my head and becoming unable to tell the difference without a lot of effort, and still sometimes not even then. It means replacing getting so much information I don’t always know what to do with it, and then slowly, accurately, and not entirely volitionally sorting through it, with instead, getting tiny bits of information while believing that I am perceiving large amounts. It means replacing the world with a permanent hallucination in my head that I am unable to turn off.

It means making me at least four inches taller (given my family’s heights I “should” be at least 5’6″ and was always tracked by a doctor over this as a kid). It means stretching out my fingers and toes, removing some skin webbing, shrinking my eyes, and moving them around a bit as well. It means bigger (and possibly differently shaped) ears, bigger mouth inside and out, different teeth. It means plastic surgery to reshape my nose, upper lip, and jaw. It means electrolysis of much of the hair on my face, reshaping my eyebrows entirely, and removal of even a good deal of the hair on the top of my head. It means rearranging my face, literally — and large chunks of the rest of my body too.

It means gutting my peripheral nervous system and replacing certain particular kinds of nerve fibers with ones that are formed more typically, thereby completely changing my perception of pain, temperature, and my body itself, as well as changing the way my digestive system functions. It similarly means gutting my central nervous system and rearranging all of my brain cells into a different pattern.

It means removing empathy and a sense of justice and replacing them with far more indifference so that I would never experience the emotional pain that has been pathologized by psychiatry in so many ways. Similarly, it means erasing large and formative aspects of my life, because my reactions to these events have likewise been pathologized by psychiatry.

It means changing things so that my muscles had an entirely different default setting for how they arranged themselves. More poised, in a very particular sense of poised. Less droopy. More body parts moving at once. It means changing the way I sit, stand, walk, wheel, run, and dance, entirely, to something much more typical.

It means removing the lengthy times between perception and understanding, between intent and action, and removing the things I value about those times. It means moving quickly with more of a split-second attitude to life, never taking the time it takes to get to know and interact with someone like me. Which in turn means I’d have almost none of the friends I have now, and would probably misunderstand their motivations and not particularly appreciate them (that is how a lot of people I know react to them — and to me).

It means making me classroom-ready by evening out (by school standards) my academic skills and dulling my perceptions of the world around me until they become unrecognizable.

It means giving me stamina that I don’t currently have, making it easier for me to breathe in all kinds of different circumstances, and removing my migraine headaches, and, of course, anything attached to these three things.

It means, also, removing any part of my life that would have made me grow up fearing institutions, because my reactions to that fear are psychiatrized rather than understood as responses to a society that sends all kinds of messages that some kind of people shouldn’t run around loose. In turn, making me one of the sorts of people who never has to worry about being institutionalized, which are rare sorts of people indeed. And, of course, making me not care overmuch about those that it happens to.

Probably make me right-handed too, which entails more brain rearranging, and probably more than just the motor areas. And, of course, remove any and all tics, and the thought patterns that go with them.

Cure means rearranging me on everything from the obvious physical level to the genetic level. Rearranging at the genetic level always entails surprises. Pull on one thing and you find it’s attached to ten other things you didn’t even notice and would never have predicted, because you didn’t know that gene dealt with all of those things at once instead of one tidy little thing at a time. Similarly, rearranging the brain and other parts of the body will always have effects you didn’t count on. This is what happens when you mess with systems that are complex and interconnected.

Can You Recognize This Person?

Can you recognize the person that I just described? I can’t, not even on a purely physical level. She’s shaped differently, inside and out, than I am, in so many different ways that it’s hard to count them all.

Someone told a story recently — I wish I knew who, so I could credit the source — about a teenager with Down’s syndrome who asked her mother if she’d still have Down’s syndrome in heaven. Her mother replied, “Probably not.” The girl got confused and asked, “But then how will you recognize me?”

I have to echo that. Maybe it’s easier to envision a “cure” if the ways in which you are different do not show up in fundamental aspects of the way you perceive the world, or on your face, or, as Harriet McBryde Johnson put it in her interview for the Holocaust Memorial Museum, “But to me, my disability is — I mean, it is part of my DNA. It’s in every — every — would you say “molecule” of me? I don’t know enough about the biology. But I mean, you know, at the tiniest level, the disability is part of who I am and, you know I really have no interest in changing that. It seems to me much more interesting to figure out what to do with this kind of body and this kind of life.”

To wish to be cured, in my case, means to wish to be an entirely different person, a person that perhaps society values more, but a person who is not me in any recognizable way, shape, or form. Some people take this to mean that I think all I am is this thing they view as “disability,” but it’s more like, enough of who I am is attached to what other people medicalize and pathologize, that I would not be recognizable without that. If I said I had no wish to be cured of being female, nobody would question that I’m more than just a female body, and when I say that I have no wish to be cured of being a lesbian, most people don’t think that I mean my preferences in a partner are all there is to me. These things in fact affect less of my body in many ways than being disabled in the ways that I am does, yet people still generally understand my right to be fairly attached to those things without making it a value judgement about me that I do.

The Obligation of Cure

A lot of people make cure sound like it’s some kind of choice, like in the ideal world, we will have medical science all lined up with its wonderful cures that turn everyone into the ideal kind of person (whatever that’s supposed to be, and as if any human has access to that level of knowledge), and then people will be allowed to either take it or not take it as the case may be. They say people like me have nothing to worry about in research into a cure, because we don’t have to take it if we don’t want to.

At the same time, I have already heard a number of people claim that anyone who gets the kind of government assistance I do (I’m on an obscure offshoot of SSI, live in subsidized housing, and receive services from developmental services — they don’t of course mean the kind of government assistance everyone gets) should be forced to take a cure. I have seen claims that those of us who are on government assistance are actually lazy, and that we hope that nobody will cure us, because we don’t want to have to get jobs, and therefore have no “incentive” to be cured.

Here’s an example of some of the worst of that:

Neurodiversity is all about accepting brain damage. Until recently, people with the brain damage misnamed as autism really had no choice but to accept it. Instead of keeping pace with the state of the art regarding autism, these lazy bastards now want the whole world to change to accomodate them instead of getting off their ignorant asses and curing themselves.

These people remind me of welfare recipients who refuse the cure for poverty known as work. They want the rest of the world to support them so they can sit on their asses and have the necessities of life provided for them. These neurodiverse knuckleheads want aides provided to wipe their asses for those who can’t toilet themselves but they refuse to be cured. The hell with this idiocy. Let’s round them all up and cure them. Don’t hand me this bullshit about killing the autistic person by curing them. That’s like saying we kill babies by teaching them and nurtuting them so they can grow into self sufficient adults. Enough of this ridiculous nonsense. If you don’t want to be cured, then you lose your social security, your group homes, your aides and whatever the hell else you get that’s paid for with our tax money. You’re all so screwed up from mercury that you don’t realize that your brains will work a lot better if they’re not filled with poison. Killing the autistic person, my ass.

I have heard people say that people like me should not even reproduce, because we will bring more disabled children into the world. I have heard people say that people like me reproducing should be criminalized, because we are inflicting “a life of pain and suffering” on our children, however we feel about our own lives. I have even heard that said about people whose differences from the norm are almost entirely cosmetic.

I have heard that I am an adult, who did not get to benefit from a cure, and therefore I selfishly want thousands of children to suffer so that I will have company in the world. I am told it would be better for those thousands of children not to exist at all, never to have existed, to just plain not be there, than to have to experience life as a disabled person. And I am told this is somehow different than eliminating any other group of people from the world, and should be looked at differently, as in a unique category of medical progress rather than extermination. And I wonder what other group of people would be told that not wanting people to turn them into some other kind of people is selfish.

I have heard so many views that treat disabled people as non-contributing people who maybe shouldn’t even really be considered full citizens of the countries we are born into. And that take everything from the standpoint that a person must be a certain kind of productive in order to be a life worth living. And the echoes in my head of unproduktiven Ballastexistenzen are dismissed by these people entirely as alarmist and stupid.

But the end idea is, that talking about choice in these matters shows little understanding of how these things work. A person like me does not get choice. A person like me gets force. Force from guardians, or signed off on by guardians, if young or under guardianship. Force from the government in the way of canceling any government assistance until compliance is assured. Force from the medical establishment in the way of tying me down and using literal physical force to administer whatever they believe is good for me. The first and last of those have already happened to me. What is “choice” in a world that works like this for the majority of disabled people?

When is the Cure Worse than the Disease?

Let me now pick an example of something that may or may not be attached to something else, but if it is not attached, would not bother me at all if it vanished tomorrow: Migraine headaches.

I don’t just get a migraine every now and then. I have a migraine from about five minutes after I wake up until I go to bed. If you are not acquainted with migraines, be aware that they are not just headaches. They are an entire set of neurological things that cluster together, for reasons that are not totally understood. They are also not, as once believed, psychosomatic. They are more like epilepsy than like a stress-related headache. (They can, like many things, respond to stress, but that’s not all there is to them by a long shot.)

At any rate, they can create nasty headaches (and some of the most severe pain there is), visual disturbances (blind spots, seeing flashing lights, etc), fuzzy-headedness, difficulty with speech or language, nausea, vomiting, extreme sensitivity to light, noise, and scent, stuffy nose, upset stomach, muscle weakness, and difficulty moving. They are the sort of thing that very few people who have them don’t want to cure. They’re unpleasant enough generally that even without the headache part, they’re not that much better than with the headache.

And the marker of “severe migraines” is having more than six a month. I’d imagine thirty a month qualifies.

When it comes to migraines, I have been about as good by medical standards — obedient to the wishes of my doctors — as it is possible to be. I have tried a number of different ways of getting rid of them.

I have modified my diet to remove or greatly reduce foods that trigger them (in my case, chocolate and bananas). I have changed my environment in other ways.

I have tried pretty much all of the drugs in the triptan class of drugs, which are used only to get rid of migraines in the short term and can only be used a couple times a week. I have not overused the ones I have tried. I have tried Maxalt, Imitrex, Zomig, Axert, Frova, and Relpax, and found that most did not work at all (or only worked partially and then my headache came back worse in an hour), and finally found recently that Axert works the best. (The only one I think I have not tried is Amerge, and I may in fact have tried it from what I can recall.)

So, I’ve found Axert, which doesn’t remove, but reduces my migraines, without making them twice as bad afterwards.

I have, where possible, avoided taking any kind of pain medication more than two days a week, because all of them can cause rebound migraines if used more than that.

Then there are medications they give you for prophylactic treatment, which basically means preventing migraines in the long term rather than the short term. Since I have migraines daily, constantly actually, that puts me in a particularly hard category to treat, but I try them all anyway.

I have tried beta blockers, and watched myself struggle immensely to breathe even at a very low dose, even though my headaches did get a lot better. Taking massive overdoses of Albuterol every day for nasty asthma attacks is not a good thing.

I have tried raising my Neurontin, which did a lot for neuropathic pain and nothing for migraines.

I have tried Topamax, which induced personality changes so extreme that everyone who knew me begged me to get off of it as soon as possible, but which also impaired my judgement so much that I did not know until afterwards the ways I had changed (I could have ended up seriously hurting someone, in fact, if I had not stopped it).

I have avoided anti-depressants (both tricyclic and SSRI) because of past extremely negative experiences with them, and doctors have said I’m justified in doing that.

I have tried Norvasc, which caused too much water retention, and Lotrel, in which this water retention continued and worsened until I had trouble breathing and ended up in the emergency room with water retention all over my body. (If I had not known what it was, I would have allowed the doctor there to do what he wanted to do and give me Benadryl instead of a diuretic, and would have been a lot sicker and possibly dead.)

Then I tried Lisinopril. Which either caused an allergic reaction to it, or amplified an allergic reaction to something else. I had to stop it last week after it started affecting my breathing too much to ignore.

So I got an email this week listing three drugs I could try. Keep in mind, we’re outside of the realm of on-label drugs already, I’ve tried all of those or have enough counterindications that the rest are not an option.

Keep in mind something else: For migraine prophylaxis, you have to try one medication at a time, and then try it for three months to see if there is any change. More than that, or more frequent, and you might not notice anything.

Keep in mind yet another thing: The side-effects that have caused me to stop taking, or be unable to consider taking, various kinds of migraine medication, are not minor nuisances that I can brush off. They are, in fact, potentially fatal.

The first the doctor suggested was amitryptaline. Based on very bad experiences with tricyclic anti-depressants, I’m not going to take that.

The second the doctor suggested was riboflavin (vitamin B2). That is the one I decided on trying next. The studies on it have been mixed, but some double-blind studies have indeed shown it to be useful, both in comparison to placebo and to some other migraine drugs.

The third one the doctor suggested was Namenda. He included a note that Namenda is difficult to get hold of in pharmacies and that he’d have to give me samples.

I did some research on Namenda. It’s given to people with moderate to severe Alzheimer’s, and that is its only on-label usage. It’s a relatively new drug, having been out in Europe for ten years and America for three. I could find no double-blind studies about its use in migraines. In fact, I could find no peer-reviewed studies of any kind about its use in migraines at all. All I could find was a poster presented at a conference by two doctors who’d conducted an open-label study on sixteen of their patients.

If riboflavin doesn’t work, then Namenda is probably going to be something he brings up again. A highly experimental drug (at least with regard to migraines), with few long-term side-effects for anyone even known about both due to its newness and to the fact that it’s mostly been tested on older people. New drugs are dangerous that way: You don’t find out the long-term effects until long after they’ve been out, and then usually through patient reports (or patient deaths).

Migraines are highly unpleasant, but I would rather be alive with a migraine than dead. What I want to know, is exactly what lengths I am going to be pushed to by others, to try experimental drugs with unknown long-term effects and unknown efficacy, in this pursuit of a migraine cure. At what point are people going to acknowledge my right to say that the risk isn’t worth the potential benefits, and that I want pain management rather than turning my body into an experimental laboratory?

Meanwhile, of course, while I’m pondering this, people are pushing cures at me that range from possibly useful to downright quackery. Everyone and their dog has heard of a wide range of migraine cures that worked for them, or their aunt, or their cousin’s wife’s best friend. Merely stating that I have migraines means bringing on an onslaught of these, with very few people willing to listen to the fact that even among the ones that work, I can only try one at a time, and no, you’re the fiftieth person to recommend acupuncture and I still don’t want it, thank you, goodbye.

Then come the accusations.

“Don’t you want to get better?”

My question is, at what cost “better”? All of my money? My life?

When, even in the face of something incredibly painful, do I get to say “I’ve had enough of trying to cure this”? Do I get that choice, or does someone else get to decide that I’m just not motivated to get well and “must enjoy being sick or be afraid of getting healthy”?

Anyone who thinks I enjoy having migraines, by the way, is welcome to take all of mine off my hands and see how much they enjoy it. People seem to think of things like migraines as a way of getting out of having to do things. Perhaps if they had migraines, they’d understand that the reason I get out of doing things is because of that little problem of having the nastiest pounding headache in existence while watching a light show that looks like the end of the movie 2001 and vomiting all over the place. (Then again, some people deliberately take drugs to achieve all three of those, so who knows.)

Medical Authority

A few years ago, I received a misdiagnosis that, under the circumstances, was fairly comprehensible: Signs of several different things (including malnutrition) were mimicking something else. This sort of thing happens.

At any rate, my doctor prescribed a drug that I was not comfortable taking. The packaging specifically warned against people with certain health problems taking the drug. I had those health problems. I did not take the drug.

Now, despite the fact that the condition (even the condition I was misdiagnosed as having) was a physical one, it was being handled by psychiatry because it was a sleep disorder. Psychiatry has a rather different take on why people don’t take medication, than regular medicine tends to. If I am worried about adverse effects, generally my medical doctors will talk to me about it and try to work something out. Psychiatrists tend to, instead, get pushy, and imagine every reason why a person won’t take the drug other than why it really is. This is partly because psychiatrists view “noncompliance” as a psychiatric problem in and of itself.

The following is an excerpt of a letter written to my mother by my psychiatrist. It was written to her without my consent or knowledge, despite the fact that I was over the age of 18 and had not signed any release-of-information forms. Therefore, it was also written to her illegally. Warning: It is screamingly view-from-above to the point where I almost didn’t want to go dig it up so I could type it into the computer.

My concern if she does not treat the [symptoms] and just surrenders to it… she will become an invalid and her muscles will get disuse (i.e. little use) atrophy, her energy level and strength will decline, internal organs weaken, immune system deteriorate and her health fail. Her will to live will weaken and her mind again become fertile ground for take over and madness.

If we don’t use our bodys and minds (for what they are designed to do) we lose them. And no one can or will rescue her. She need to fight for her health, her life, like she fought for her mind.

Even our most trusted friends lose interest in time if we can’t or don’t reciprocate. The lower we get, the harder it is to come back.

Reality and the natural laws of nature can and will be harsh teachers if we can’t learn from our teachers and advisors, parents, physicians, others who have been there.

I am again reminded that autism is a withdrawal from reality into a world of their own. But natural laws still govern our physical bodys and brains and we neglect our physical health at great risk.

Temple Grandin, PhD is also autistic. She chose to fight for her life and her mind, her health, her education, her place in the world. Her purpose for being here. And she found the way she can work and support herself and be of service to others.

It’s a terrible mistake to throw away our gift of life and refuse to use the other special gifts and talents we have and turn a deaf ear on that still quiet voice of our soul that calls us be who and what we can be and to follow the way of our purpose.

Anna, if your intuition tells you what and how you may share these thoughts with Amanda, I will appreciate your doing so, because I am deeply concerned about her and am painfully aware of the limitations I have in helping her. But I am confident that she has the abilities needed to get out of this abyss.

So… just to clarify here. He prescribed a medication, for a condition I didn’t turn out to even have to begin with (the “symptoms” of which went away once I received enough services to eat on a regular basis, which I was right at that moment fighting for those same services, while he was accusing me of not fighting for survival), and it was a medication that was likely to cause great harm to me. I refused it after careful and considered thought about the situation, including doubts about the accuracy of his diagnosis to begin with. And the above melodramatic letter to my mother was a doctor’s response.

Fortunately, he turned out to be exactly wrong, exactly backwards, about his assumptions about me. Refusing medication from him, for the first time ever, was a turning point in my confidence in my ability to make my own healthcare decisions, and that is how I remembered it long before I found out about this letter. Soon afterwards, I acquired a wheelchair, which made me a great deal more mobile and active, thereby avoiding his over-dramatic description of the inevitable decline in my health and eventual death. Although, by the time I got a wheelchair, I was also eating, and therefore not experiencing most of the symptoms (of starvation) he assumed would continue forever anyway.

Far from not fighting for my life and my health, I was doing that on a daily basis. That unfortunately meant having to fight that psychiatrist off, as well as fend off well-meaning attempts by my parents (when fed doomsday scenarios by the psychiatrist) to convince me that what he said was true. Fortunately the writing of Jesse Kaysen about wheelchair use — including How I Learned to Stop Worrying and Love My Wheelchair — along with their being able to see how much better my life was after getting a chair, changed their minds on that topic. Eventually.

I have more, and better, friends than I did then. I’m happier than I was then. I’m able to contribute more — in the ordinary sense most people mean it — than I was then. And part of all this was learning to say no to a guy with ridiculously overblown bad estimations of my future. As far as my mind being fertile for takeover? I was busy throwing him and every other shrink I’d had out of my mind, and he considered that, I guess, takeover. Yeah, I’m glad I took back my own mind.

I went back at one point, years later, in order to get some papers filled out, and told him how much better I was doing now. I told him the news that I was presenting at a conference, and a whole lot of other stuff about how much my life had improved. When I later saw the papers he had filled out, in the part that was supposed to describe my appearance, he wrote, “unusual, odd, bizarre, childlike, affect labile & excitable”. Labile, for reference, means “unstable” in shrinkspeak.

Keep in mind, I did not know how he thought of me at that point, until I later saw my records, which included the letter to my mother. My reaction mirrored how stunned I was when I saw a description of my functioning level over time, from years before. The description called me low-functioning and expressed hope that some day I would be something around mid-functioning. There was a graph. I honestly thought it was upside down. The better I felt, the lower my functioning level on the graph. The worse I felt, the higher my functioning level on the graph. My functioning level was highest on the graph during a period of total despair, self-hatred, and self-destruction. It was lowest when I was best at managing relations with the world and asserting myself.

That letter, and that graph, taught me a lot about medical authority.

I learned that many people in the medical profession viewed me as doing better, not when I was doing better, but when I was both less happy and less capable. I learned that many people in the medical profession thought I was doing worse the better my life got and the more of my own life I had. Other people’s focus on a few tiny aspects of outward appearance, and on compliance at all costs, hit home hard as I read the records. And — by the way — among my psychiatrists and psychologists, this guy was a relatively good one in comparison to the rest.

To be cured, is to be brought closer to someone else’s standard of perfection. Resistance to cure, and to medical authority over what constitutes goodness or perfection in our lives, is sometimes the most important thing we can do, and one of the things we are least equipped to learn, because medical authority has a way of insisting that it is right and that we are wrong. The psychiatrist who wrote that letter cared about me and honestly believed what he was saying was true. That doesn’t make him more of an authority on my life than I am.

People like him, though, make it harder to make decisions like the one I might be facing with the Namenda for migraines, or to contradict doctors about what is good for us. I might also add that he needlessly increased the tension between me and my parents by putting them in a position of trying to persuade me to do something I knew was wrong. I never knew why they’d gone into a pill-persuasion frenzy at that time in my life until years after the fact, or why they became suddenly convinced that I was “resigning myself to be an invalid”.

It is really hard to develop a mind of your own when everyone in your life is giving you scenarios like that letter. But I did. And I’m way stronger for it — possibly also way less dead — than I would have been had I caved in on that. That still small voice in my soul was telling me to get the hell away from him and anyone else who thought like him. And it was right. How dare anyone claim to know for someone else what that voice is saying?

I’ve found that the more I’ve found my own voice, the more certain people have wanted to silence it. The above was one way of doing so. Thankfully they did not succeed. And, I use my talents to their fullest, thank you very much. One of my greatest talents is a bullshit-detector, and it screams whenever it reads letters like that.

I’m not the only person who’s experienced this. Zilari wrote A Letter I’ll Never Send to her psychiatrist, who treated her the same way when her life started getting better.

Hey, watch it, that’s attached!

Then there are other things. Neuropathic pain. One of the most nasty, evil, vile kinds of pain known to humanity. Without medication, I feel like my body is covered in icy-burning sandpaper, and like any minor pain in my torso has an especially hot spot radiating out from around it to the point where I can’t feel whatever the original sensation is. Untreated (which it was, for over twenty years, because I didn’t know what it was), it got to the point after awhile where I was stuck curled up on a couch for three months straight and had to recondition myself to be able to sit even tilted slightly upright. One of my friends calls it the flaming spikes of death. Nasty stuff, at any rate.

The best theory I’ve heard as to why this happens to me is that a particular kind of nerve in my body is formed a little different than usual. This explains neuropathic pain, it explains some of my differences in temperature sensation, it even potentially explains my reflux and bowel problems. This wouldn’t show up on the standard nerve conductance tests I’ve undergone, either, since those measure a very different sort of nerve.

So, this sounds like a great thing to cure, or never have had in the first place, right? Awful, nasty, mind-bending levels of pain accompanied by functional digestive problems. Doesn’t sound like a hard choice. They even think they know a genetic mutation that makes things this way. Would have been better off without that, right?

Not so fast.

Those same genes appear to be attached to a number of other things about my body, including ways that my brain works that I am decidedly attached to. Change that gene, and not only wouldn’t I think like myself, I wouldn’t even look like myself. Thanks, but no thanks. Some things are more complicated than they look on first glance.

I’ll gladly take as much Neurontin as I can manage, but no way would I want to mess with my genes. That’s in too deep, and in too unpredictably, and it’s a major violation. The reality is we don’t really know as much as we think we know about the human genome. The reality is that our DNA is part of what makes us who we are, for better or worse.

These situations are like when you try to pick up a stick and find that it won’t budge, and pull harder and harder and finally you get it off the ground, only to find you’ve been yanking on a root, and in fact uprooted and killed an entire plant. Which may be fine for you if you wanted that plant for dinner, but it’s not so fun for the plant.

Mistaken Impressions about Not Taking a Cure

People do not generally understand the real reasons that many people are not all that interested in cures. Those reasons can include: Rejecting entirely a medical model of disability (or of some categories of disability), having different priorities in life than endlessly searching for a cure, the absence of safe and effective cures available, the fact that yanking on one thing may inadvertently yank on several others, believing that we have had valuable experiences that we might not have otherwise had, and believing that what other people call “our disabilities” are actually an important part of us. Those are the real reasons that I hear over and over again.

But there are other reasons that I hear over and over again, usually invented by others because they refuse to believe our real reasons could ever be the case.

Even some disability rights activists get into it. Billy Golfus, in “Some Thoughts For the New Kids” (Mouth Magazine, May 2001) says “Now some gimps will tell you they wouldn’t trade their disability for all the wonnaful-wonnaful things they’ve learned. Rhetoric. That’s just rhetoric. If you started a line for who wants to be brain damaged and have memory trouble, lack of mobility, and surprises with their elimination functions, you’d find the line pretty goddam short.”

It’s not just rhetoric though. And it’s not all just about “the things we’ve learned”, either. Many of us genuinely don’t want people to rearrange important aspects of who we are and how our bodies function, just because they think their way is the better way. He’s got it right in the same article when he says that the real problem disabled people face is “MacSameness,” the idea that all people have to be the same. He’s just a little off when it comes to why many of us don’t want to be “the same” in all respects.

Last night (as of writing this part), I got into a conversation with someone who compared me to an inhabitant of Flatland who had never seen the three-dimensional world and had no interest in it. Flatland is a book by Edwin Abbott Abbott, where two-dimensional creatures are baffled and frightened by the existence of three-dimensional creatures. This is view-from-above thinking, right down to the spatial metaphors. The idea is that I live a constricted life and cannot see the beauty of the other way of living, therefore I don’t want it, but only because I’ve never seen it, and if I’d ever experienced being non-autistic I would jump at the chance to stay that way.

That view starts from the assumption that being non-disabled is automatically superior and that those who don’t believe this to be the case, are fooling ourselves somehow, or limited by our experiences.

Then there is fear.

Some people believe that those of us who don’t want to be cured are afraid of responsibility, afraid of having to get a job, afraid of not being taken care of, and so on. They imagine that we’re just too scared to get better, that we prefer to remain in the ‘sick role‘, in ‘dependency’. (Never mind if we’ve fought the standard notions about what the ‘sick role’ and ‘dependency’ actually are, this is irrelevant, disability is, according to people who take this viewpoint, wholly individual after all.)

There’s a wonderful passage in Laura Minges’s article Disability Shame Speaks, that deals with this in the context of physical therapy:

Sure, every once in awhile they get a rebellious patient. Physical therapy is hard work, and some people are just used to having things done for them. It’s easier. Certainly, when such patients cry, they are simply feeling afraid of gaining more mobility. That’s all there is to it. I mean, after all, not everyone cries. It certainly isn’t about exhaustion, lack of privacy, feelings of powerlessness and abuse. Yes, the therapists find it interesting that adults who have been disabled from birth don’t come in much. But it’s just as well. They are the ones who always cry. Many complain of traumatic flashbacks of abuse when stretched, but everyone knows that a therapist’s job is to deal with the body, not the mind and heart. Better to concentrate on the ones who really want to get better.

The newly injured. Oh, what a dream they are. Motivated. Bright. Determined to beat the odds. Working with them is never a waste of time. They always comply, and they beam with pride. Witnessing their determination is a powerful experience. The newly injured look at the tears of the “disabled from birth” crowd and reinforce the idea that it is just fear, tell them you don’t want to move. Tell them it’s all going to be fine, that it’s an excellent thing for you. That disability is bad, wholeness good. That if you do not believe that, you have some serious soul-searching to do as to the reasons you prefer dependency.

After hearing this, those who have been disabled all their lives bolt from the treatment rooms in tears, and nobody questions why. Sometimes therapists even think it serves them right. Wasting all that time with tears and trauma when the choices are so clear. Become independent or don’t.

Then there’s the ones who just think I’m unambitious, in a bad sort of way. Clearly because I do not make it my life’s ultimate dream to be made Whole and Normal™, and because I do not expend much if any energy into that direction, I must not really care about anything important in life. The fact that the things I want to do in life don’t depend on being cured (and that some might depend on not being cured, depending on what’s being “cured” that day), apparently means I don’t really want to reach my potential. Because we all know our potential isn’t in finding the sort of person we need to be and then being that person (whether that person is “normal” or not by any arbitrary standard), but rather in how close to normal we can make ourselves. Or something.

Or, of course, we’re lazy. We don’t want to work hard. My only answer to people who believe that of me, remains, “If you spent one day in my body you wouldn’t be able to move. At all. Or understand what was going on around you. No matter what you did. So what was that you were saying about not making an effort?”

There’s also some really interesting psychoanalysis that goes on, that ends up revealing more about the person’s views of disability than anything else. A number of people have flat-out equated disability with being pitied (and with self-pity, for that matter) and have assumed that anyone who wants to remain disabled, must want to be pitied (or to pity themselves — or of course both). Apparently they can’t disentangle disability from pity enough to understand why disability activists might so commonly wear a shirt saying “PISS ON PITY”.

I got into a very frustrating conversation with someone who combined the above three (which I’ve also seen each on their own) recently, who appeared to have absolutely no acquaintance with the concept that a person they considered intelligent might be unable to move their body on demand. When I attempted to describe the reason in detail, the person told me that they, at least, weren’t going to pity me. I found this very strange, but it took awhile to convince the person that I do not, actually, want to be pitied, even if I do occasionally want people to have some grasp of how my body works.

That reminded me of Eli Clare’s Exile and Pride, where the author wrote a description of the interaction of zir body with cerebral palsy and the environment, and ended each paragraph with, “I am not asking you for pity. I am telling you about impairment. […] I am not asking you for pity. I am telling you about disability.” It seems that around some people, we can’t even describe how our bodies work without there being an assumption that we are looking for pity (or pitying ourselves) — and therefore without having to disclaim everything we write, the way Eli Clare did.

But, yes, some people assume that if we don’t want a cure, we are wallowing in self-pity and expecting everyone else to pity us as well. Short answer: No.

Then there is the response my psychiatrist gave in the letter I quoted before. That one is a classic. I’m just “giving up” if I refuse to go with what the medical profession wants of me. No.

This is one of those things where I never even know how to have a conversation with someone who thinks that way. Someone who believes my entire life revolves around concepts that I don’t even believe in, and that they somehow have the special knowledge of everything I really believe about myself, and all my real motivations. How psychiatry-like of them, really.

Telling people our real reasons never seems to get much of anywhere, people go on believing whatever they believed to begin with.

Cure or…?

I often hear disability academics (and people who’ve read them) talking about “cure or death”. That we’re not expected to be alive and uncured. But the one I’ve been force-fed all my life is “cure or institutionalize”.

When I was a kid, the neighbor kid’s mom got multiple sclerosis. Seemingly overnight, she was living in a nursing home. The nursing home was tied to the MS in the way everyone talked about it. They were a package. If she got “better,” she’d leave. If she didn’t, she wouldn’t. Nobody even heard of other options. Her husband visited every now and then. She’s still living there.

As I got a little older, I saw people who moved and sounded familiar, like me in some fundamental way that other people were not. Inevitably they were being walked around in a line by staff, and coming from the nearby state institution or some of the group homes in the area. I found this ominous.

Part of the reason I ended up in institutions to begin with was my terror of ending up in one and my knowledge that given the way things seemed to work it must be inevitable sooner or later. There just were not people like me on the outside. And as the shifts of adolescence came around, what a person-like-me was, was unmasked to other people in more ways than one.

When I was locked up, I heard two main stories. One story said that I would remain disabled and institutionalized. The other story said that I would be cured and free.

These stories were supposed to sound different to me. They sounded like the same story told two different ways. The story they were the same as said “You can either be disabled or you can be free, but not both.”

I knew that whatever part of me didn’t fit into the neatly ordered society other people lived in was embedded deep inside of me — not a temporary, surface characteristic, nor something I could hide — and I pretty much tried to destroy myself physically and mentally in any way that crossed my mind.

People did not know what my reaction was based in. It was based in having been raised with an ordinary desire for everyday freedom and learning that I was not the kind of person meant to have it. It was like growing up outside of jail, expecting oneself to remain outside of jail, and finding out you had, in fact, committed a heinous crime a long time ago without noticing, and would spend the rest of your life in jail. There are people trying to give you “hope” by trying to prove you innocent, but you know you are guilty.

Add to that the fact that I was a teenager and teenagers tend towards emotional extremes. Bad combination.

I do not enjoy telling that story. I would rather not tell that story. But I have no doubt that a new generation of children is growing up in that story right now and will end up right where I did. Because very little in that regard has changed since I was a child.

The following quotes are from a larger story about Elizabeth Bouvia, but these specific quotes are about Ed Roberts and the independent living movement for physically disabled people — and what a woman who’d later become a disability rights activist knew about him at the time (nothing):

Roberts would eventually become revered by activists in the growing disability rights movement across the country as “the father of independent living.” He would be hired to run California’s Rehabilitation Services Department, he’d set up independent living centers throughout California. The federal rehabilitation services administration would provide seed money to start “independent living” programs in communities all across America so that severely disabled people could learn ways to live on their own rather than in nursing homes. Roberts would win a MacArthur ‘genius “award for his ideas. Yet his ideas — and “independent living” itself — would remain virtually unknown in the larger society.

As far as Cheryl Wade was concerned, Ed Roberts and “independent living” could have been on another planet, rather than just across the Bay. Cheryl Wade, in San Rafael, California, would in the 1990s become what the crip community called a “crip culture activist.” But at the time Bouvia made news, she was one of those people who easily understood Bouvia’s sense of helplessness. “I sat mired in self pity in front of a television set,” she said, recalling earlier days. “Like my parents, friends, and neighbors, I’d grown up believing disability was a fate worse than death. The narrow images of disability that I’d come to accept as the only realities were those of the sweet, doomed poster child and the beggar on the corner.”

Cheryl Wade had “no idea,” she’d write, years later, that anything like that which Roberts was doing would even be possible. “Because I had only images of helplessness as references, I was unable to imagine that a severely disabled person could live on campus, hire attendants to assist with personal care, take control of his own life,” she wrote.

I had no idea, too. I was not totally clear on what an adult like me looked like. Except, perhaps, invisible. (I did try to turn myself invisible. It didn’t work.) And, perhaps, locked up somewhere. I knew that, with the shifts in my abilities over time, I was not capable of hiding in the usual senses.

So, basically, I was a mess, but I wasn’t a mess “just because…” (which was what lots of people were acting like). I was a mess because there was no foreseeable future for someone like me. I tried every manner of ways to disappear. I want to list them but many of them still seem private and embarrassing, or like revealing them will cause professionals to descend on my apartment or something. Probably silly, but I guess I won’t be doing details right now.

What I want to know, is how many disabled children are growing up right now, exactly as I did, and stuck in the same internal prison because they see no way out. The ones who can, will often try to pass. The ones who cannot pass, may end up like I did. I hope they get out.

This is one thing that I find the most damaging about cure: It destroys people’s minds like this. It works especially hard on those of us most likely to end up in institutions or other nasty situations that are seen as the only alternatives to cure. This is not just about autism. This is about anything.

People have lives that we need to live right now. Not at some hypothetical future date when we are cured. People need to know how to shape our lives now, as we are, however we are. People need to know that it’s possible. These are basic things. When the focus is on cure, and not on living our lives, people die waiting for their lives to start. At no time when facing a life and death situation have I thought, “Oh no, I’m not cured yet, I wanted to be cured before I died.” If I’ve thought anything I wanted to do, it’s been about things far different than cure.

But one reason the emphasis on cure is harmful is because no other options are presented. I doubt that most disabled kids realize the kind of lives they could lead as adults. I am decidedly surprised — and happy — about my life. But it shouldn’t have been a surprise that I could make a life like this.

Someone said recently their job as a parent was to prepare their kids for the real world, not to prepare their kids to be happy. Whatever. But I live in the real world too, and I know that I was never prepared for the world I live in now, as a kid, because people were too busy preparing me for either cure or institutionalization. Nobody prepared me for lack of cure and freedom. I don’t see the people claiming their kids need to survive in the real world, generally teaching them much about how to survive in the real world as a disabled person, I see them teaching their kids to be as close to non-disabled as possible, and that’s not the same thing. That’s not true preparation for how to handle your unusual body and mind in the real world, it’s preparation for “pass or fail”.

The Partial Cure

I hear about the partial cure mainly in the autism community, and I hear about it from two groups of people.

One is parents defending their usage of the word “cure” in terms of their children. They tell me I am cured, because I can write, and that if their children could write as well as I can, they would consider their children cured. Most of the people who say this have, obviously, never actually seen me. (Only a very few people, all of them trying to prove a point, have said I don’t look autistic, and I don’t think they honestly believed it.)

The other is autistic people. Specific autistic people.

They imagine that every autistic person wants to be like them. Whatever “like them” is. It usually involves speaking, having a more or less standard job, being very geeky and possibly lonerish, and so forth.

They further imagine that people like me, that they refer to as low-functioning, really are just like them inside, except that we have things they refer to as co-morbid conditions, such as what they refer to as mental retardation, metabolic disorders, and so on and so forth. So, supposedly a “cured” version of me is an aspie stereotype. Somehow that seems no more palatable to me than making me a non-autistic person.

I wrote The Oak Manifesto for them. I later wrote Why do you think I must want to be like you? for the same people.

Some people have also referred to me as callous because I don’t believe that even extreme variation from the norm necessarily needs to be cured. For those, please take note that I am an extreme variation of the norm. I think it is far more callous when people advocate diversity but then stop short of people like me, who are, I guess, too diverse for the concept of diversity.

Distortions

It’s been hard to write all this because of distortions. Trying to think in terms of cure squashes my mind into a narrow and grim way of looking at the world. The way that sees my own life as, well, narrow and grim. And medical. Very medical.

This is not how I see myself.

I see myself as who I am, and who I have been, and who I will be. Even while experiencing things that are very unpleasant and that are categorized as medical, I don’t experience them as if they are things. This gouging pain around my right eye is just part of my head, I hope it will go away, but I won’t die if it doesn’t.

And things that get down right to the brain and the genes and how things fit together, I have a really hard time even conceptualizing in terms of cure. That is why I wrote the first section of this how I did. What right does the medical profession have to march in, declare my brain, face, and assorted body parts to be defective, and then “fix” me until I’m someone who would be, inside and out, unrecognizable to anyone who’s ever met me?

Why do non-disabled people always assume that their bodies are superior? I’m reminded of what happened to me on Second Life. People kept assuring me that I could have any body I wanted to. That I did not have to be a fat autistic woman who sometimes used a wheelchair, if I didn’t have to. And, yeah, some of them couldn’t believe I went to such great lengths to put my face on there the way it is in real life, unibrow, facial hair and all.

I told them, when you have fought this long to have your body type seen as acceptable and even good, you don’t turn around and decide to become a tall skinny non-disabled blonde woman the first chance you get. I dislike the fact that these parts of me are even put into a medical framework. I dislike most of all the fact that people are willing to rip me up — my body, my way of perceiving the world, everything — into little pieces and say that some pieces are acceptable and some are not. I am a whole person. I do not come in parts. I do not view myself as parts. I do not need other people to rip me into shreds and take only the parts they find palatable.

Yeah, they have a name for how my brain works, but do they have to try to separate that out from me? They have a name for the shape of my body too, but does that make it bad?

The thing I find the most intensely repugnant about the medical mindset is that chops and separates which parts of us are “really us” from which parts of us are “the disability”. They make it impossible to see all of ourselves as whole. And my visceral reaction to cure-talk, as well as all the concepts that go along with it, is rejection. It is not that medicine has no place, but the place it has taken is too large and too powerful. It wants everyone the same, it declares that particular kind of sameness health, and almost nobody questions it.

Here is my last slide from the presentation at the Autism National Committee conference, which was read aloud by Kathleen Seidel while I was lying on the floor with my fingers flicking in front of my eyes. It is my refutation of the entire mindset that gives rise to cure-type thoughts, and also my refutation of people who believe it is natural to reject the appearance of their own bodies:

Some people say I am a shell with no person inside.
They see a tiny part of my body but refuse my mind.
Some people say they can’t understand why anyone thinks I look unusual.
They see a tiny part of my mind but refuse my body.
My mind and my body are intertwined.
People are only masking their prejudice by pretending one or the other isn’t there.
My looks and my writing are part of the same person.
Chopping me into manageable bits will never be a compliment.
I do not want to be forever chopped in half for people to be comfortable in my presence.
I am a whole person.
Take a good look.
This shifting soul and this shifting body are me.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

41 responses »

  1. I went to the 2nd Life (I think that’s it) to see what you were talking about… maybe 3 months ago. I didn’t like it because everything looked so stereotypically “cool” or something. I would have liked to have seen someone like you or even someone a little less “perfect” and “plastic” being presented there.

    My comment isn’t very deep, but I appreciate all the depth in your essay. The quote of the person saying that autistics needed to be rounded up and cured was horrific. It’s hard to believe someone could actually write that and mean it.

    I remember someone wrote, maybe 2 years ago that if they could they’d get Frank Klein, maybe they were talking about kidnapping him in an abstract way… anyway they’d chelate him so he’d know what it was like to be normal.

    That’s absolutely bizarre thinking, never mind that chelating him would do thing, it was about overriding Frank’s rights and totally dismissing his value as an autistic man… and about ten other ethical offenses…

  2. It’s interesting when you talk about the graph that charted your “well-being” being opposite to how you felt. A lot of people with Sensory Integration Disorder and other people on spectrum describe this a lot. The more “normal” they act, and the more they achieve on this end, the worse their bodies feel.
    Some people don’t care how their bodies fare, they just want to be accepted and be thought of as NT. Why would anyone want to accepted by a group that has absurd values? Well, I know why. But it doesn’t make it right.
    My son went through a couple of weeks in school last year in which he was “behaving well” and “making progress”. But he would come straight to bed and sleep for 3 hours every afternoon. (he was in kindergarten)
    His immune system would drop too. Still does. I don’t want him to “try his hardest” to “fit in” if it means he gets sick or can’t enjoy himself.

    ~KimJ

  3. The weird thing is, from what I can tell, it wasn’t even about how “normal” I acted. It was about my level of obedience.

    Similarly, I once saw a classroom in which the teacher pointed out the “highest functioning” student — he also wasn’t the most able to pass, he was just the one most likely to do what the teacher said.

  4. ABA, incidentally, is more about compliance than about teaching life skills. “Do what I do” or “do what I say” is the basis of nearly all ABA trials.

  5. Thank you so much for posting this.

    I have a fairly simple and minor physical disability, and I count myself lucky that there’s not foreseeable prospect of a cure. There are bits of it I’d like to get rid of (it would be nice to walk two blocks without back pain or crutches), and if there was a magic wand that would make me physically normal, I would seriously consider it. Of course my ideal option would be to chose exactly what was changed.

    But the prospect of people setting out to cure me frightens me. Because it wouldn’t be a magic wand, and I wouldn’t be able to decide what I did or didn’t want to change about myself. It would be doctors subjecting me to various medications, surgeries or whatever, all of which would have risks and side effects and expenses and time and pain, in order to make me fit their idea of normal and healthy.

    And because I won’t go to faith healers, or sign up for experimental protocols, or let someone with a booth at a street fair realign my spine, or attend physical therapy past the point of it producing noticeable improvement, I’ve also heard, “Don’t you want to get well?”

    About the only time I did follow someone’s advice about a quack cure was when I was advised to immerse my legs in sea water and lie out in the sun. But that was because I was going to the beach for a swim anyways. ;-)

  6. You know how in Second Life when you (or more often Muskie) crash, and then when you get back online and your avatar is a barbie for like a second and then suddenly your “real” body rezzes and ZAP it looks like you again? I feel relief to see that (I mean when the barbie goes away). Like, “Here is Amanda (or Muskie), after all. I recognize her.”

    OK, this is not all that deep either, but it’s what I thought/felt when I read the early parts of this post.

    PS: This post is important and ought to be an article at autistics.org (just an idea).

  7. The thing about rounding up and curing people, already happens in much the way that guy describes, in parts of the psych system. Many people are not allowed housing, money, etc, sometimes even the ability to live in the outside world, unless they take particular drugs (that may not even make them feel any better, but that are mandated).

    As Judi Chamberlin points out in Confessions of a Non-Compliant Patient:

    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.

  8. I feel so sad to read your essay, that your identity is derived from your disability, be that as it may. I wish the very best for you and hope that many scientific advances can help you.

  9. Wow, that last comment ought to go into the “Mistaken impressions…” section along with all the others. It assumes a worldview I don’t even operate under, in a couple different convoluted directions.

    To that commenter: Tell me, if you woke up tomorrow morning, and found that some innocuous attributes of yours (some of which you’d never thought about before, some of which you found fairly central to who you were) were suddenly considered “a disability in need of curing” (or “part of a disability in need of curing”), would that mean that “your identity was derived from your disability”?

    I don’t think it would, but imagining that scenario might give you some clue how silly, out of left field, and totally outside my experience, your comment sounds to me.

  10. I think some people see a disability as the same thing as having an illness. Basically I may have a cold or allergy that makes me “suffer” is annoying and keeps me from feeling my best and doing my job. Do I want a cure and get rid of it ? You bet !! I also had a health “problem” when I was born. If I had not had surgery its not likely that I would have lived past 20. I didnt have it so I could “be like everyone else ,or play like everyone else or be active like everyone else”. The motivation was to LIVE not to change who I was. Too many people dont see that difference between having an infection that is short term and annoying and prevents you from doing what comes normally and a disability that is a total part of who you are.

  11. Yeah, I mean, I have early-onset gallbladder disease, and that’s genetic, very obviously inherited in my family because all the women have it by the age of 20 or so. And, yeah, I view my gallbladder removal surgery as very different from, say, rewiring my brain, rearranging my face, and so on.

    Although if it came to the genes themselves, again I doubt I would change them. Because who knows what else is attached to those genes besides gallbladder stuff. That’s the other part of what I meant, is that when you get down to the basic genetic level, humans don’t even know what they’re messing with.

  12. I don’t know if this will make sense, but… I do think that everyone’s identity is maybe sort of a combination of how we’re made and how we react to that and to all the other stuff that happens to us. So… I donno, I don’t get what Anonymous said either.

  13. I’m also stumped by the anonymous comment. I keep trying to imagine a sense of self that’s completely unrelated to things like brain functions, genetic makeup, past experiences, and the physical body. I really don’t see what’s left. And the ‘many scientific advances’ remark is odd. It sounds a bit like “I’d like to replace you with someone more agreeable.”

  14. When I posted online a request for a legal referral to an employment lawyer, one “mom on a mission” had a nerve to actually post a reply to the following extent: “see, that’s why we need to push for autism cure – if you were cured and no longer autistic, you would’ve been discriminated at your workplace then”.

    Some logic…

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  16. http://abnormaldiversity.blogspot.com/2007/09/people-like-me-are.html
    That’s a post inspired by this entry – kind of peripheral to the topic of it, but an intriguing topic on it’s own. It’s called ‘People Like Me Are…” about your statement regarding seeing people like you being looked after by staff on outings from institutions and finding that ominous. I replied with some pondering about my own impact on an autistic kid I know, as an example of what ‘people like him’ can be.

  17. So, where exactly do you draw the line on what’s “attatched” and what’s not?
    I mean, WHY do you view your gallbladder surgery as different from “rearranging your face” or “rewiring your brain?” It doesn’t make sense, because both of those things (the gallbladder operation, and the supposed “autism cure” are aimed at doing exactly the same thing: altering a condition which (in both cases by your own admission) is “obviously genetic”.

    So how exactly can you classify ONE genetic condition as a “problem” and another one as “a vital aspect of your being”. I’m just trying to understand where you’re dividing lines are?

    I have some experience with this: I’m severely visually impaired (20/200). To some people (you, probably?) the visual problem would be seen as the sum of my personal identity. It’s “attatched” in the way that you’re autism is, in that it effects quite a lot of how I have to do things in many settings, etc. But here’s the clincher: I have NEVER considered a health problem sacred in the way that you seem to be doing. For instance, I wear glasses, took mobility training, and attempt (with varying levels of success) to be as functional as possible.

    I find this portion of your blog doubly ironic, in light of your current pain-crisis, and having the nerve survery. Isn’t the pain-disorder “attached” as well?

    You strike me as a brilliant person, Amanda, but I don’t get the double standard, I really don’t.

  18. It’s not simply a matter of what’s “attached” and what’s not.

    It’s a matter of being a lot more careful than giving blanket pathology-status to everything that the medical profession would pathologize.

    In this post, I was trying to say “Hey, the medical profession sees this in black and white, I see it in shades of grey.”

    You’re instead reading the post as, “Hey, the medical profession sees this in black, so she must be seeing it in white, because black and white is all there is.”

    Which isn’t what I wrote. Nor did I write that these things are the sum of a person’s personal identity.

    My guess (and I can only guess, because I can’t see your logic here) is that you’re saying that there’s two possible points of view.

    One is completely medicalizing a particular trait of a person’s body, and viewing it as completely separate from who they are.

    The other is viewing it as all there is to a person.

    I’m not saying either of those things. As long as you respond as if either of those things are the only two possible ways to look at these things, then you will see it as a “double standard” that I do things that you would classify into both of those categories. But I can’t really help that, all I can do is explain that I’m not doing what you claim I’m doing. If you think I’m “brilliant”, maybe you ought to give me credit for having thought of that.

    You’re the one who made the connection between “attached” and “sacred”. I never said anything was sacred.

    In fact, I find it very hard to carry on a conversation with someone who seems to be carrying on a conversation with someone else. As in, not me, as in, not what I said, nor what I meant.

    There’s no contradiction in something being attached to a person and the person wanting to change it. However, when something is attached to a person, rather than some kind of external add-on, then it’s vital to look really hard at how and where it’s attached, to see what the consequences are of changing it, and whether they are worth those consequences. The consequences are not necessarily remotely obvious. But people run around figuring that if something is medicalized then medicalization is the only possible way to view it, and therefore that it must be wholly bad, wholly wrong, and wholly separate from who they are.

    But it seems that you, coming from this viewpoint, sort of blend the worst aspects of the two viewpoints you are aware of. (Neither of which are my viewpoint.)

    You seem to take the notion that anything that has ever been medicalized is by nature and definitely a disease, wholly wrong, wholly bad, and wholly without negative consequences to change.

    Then you seem to take a caricatured part of another notion (that you seem to be operating as if it’s the only other one), that says that if something is a part of a person, then it is “sacred” and must never be changed at all.

    Then you seem to combine the worst aspects of the two and say that I’m saying disease is always sacred and must never be changed at all. So then you view it as a “double standard” if I go ahead and change something, because you assume that I hold a viewpoint I simply don’t hold.

    Even purely within the medical model, mind you, there are a lot of negative consequences of treating some things, and sometimes, even if you think of something as wholly negative, it is best to leave it alone because the cure is worse than the disease.

    And even when you do use a treatment, you don’t use it lightly. Because things are attached, and in weird ways. Messing with beta blockers in an attempt to cure migraines results in severe asthma attacks, and messing with beta agonists in an attempt to treat asthma attacks results in severe migraines. Even if you look at that from a purely medical point of view, it’s not exactly a simple situation, because you don’t just have one body part detached from all others.

    As far as things like trigeminal nerve pain goes, yeah of course it’s attached. Yeah, I also chose to change one superficial aspect of it. But what if the gene (I’m assuming it’s a gene, might not be) that caused that also caused a lot of other things, some of which I’d rather stayed the same? That means I wouldn’t fix the root cause at the genetic level because it might “fix” other things too that aren’t in need of fixing.

    If some of the pain I experience is caused by the highly ungated manner in which I take in information in general, I do not want to give up that manner of taking in information in order to fix the pain, so I would not go to the absolute root cause that might be the manner in which I process information. However, obviously there are ways to treat pain that do not require changing the way I process information into something more standard.

    Just as there are ways to work around the perceptual errors that creep in with methods of processing information that look more efficient on the surface but only because they’re cutting out more of the data and replacing it with assumptions that they can’t even tell they’re replacing it with. I doubt that people who process information that way want to become like me just because there are downsides, even extreme downsides, to it, and I don’t see any reason I should want to become like them because of the downsides to my method of processing information.

    So, basically, if the only method of treating this or other pain meant going back and somehow rewiring me so that I would perceive the world in a pretty much typical manner, then I would not do it. If treating the pain involves taking drugs that are acceptable to me, or dealing with surgical treatments that are also acceptable to me, then that is fine.

    There’s no contradiction here, just a willingness to explore the enormous amount of grey areas between wholly medicalizing something and wholly considering it too “sacred” (your word, not mine) to change.

    And I’ve just read over my entire post again, and read the level of nuance I put into what I said. The amount of grey areas I did explore. Are you sure you read it carefully, or did you read parts of it, think you already knew what it said, and fill in the blanks with something from your own head? Because I think I mentioned several times over that while I would get rid of pain itself, that if it comes genetically with a lot of other things that I do not want to get rid of, then getting rid of the root genetic source of it would be a horrible thing to do, even if getting rid of some peripheral source of it (by, say, the nerve treatment I just got, or the meds I’m on for it) is okay.

    My point was not that there was no place for medicine (and I said that several times above). Only that it is not the only lens to view a person’s body through, and is not always the best lens to view a person’s body through. And that when a person wants or is urged to make changes to their body, they should be careful to see what other parts of them those changes will pull on, and make a considered decision that is more complicated than a blanket “disease bad, cure good”. You appear to be interpreting “Things are more complicated than this” as “I am taking the absolute opposite view to this.” You also appear to be interpreting all the changes I described above, as if I would never take any one of them. I never said that, I just wanted to explore all the changes together, instead of neatly and tidily separating them all out the way the medical profession tends to. I talked about things I very much wanted to get rid of, and things I very much did not want to get rid of, and which methods of doing so were acceptable or unacceptable to me personally, and why. There are no contradictions here, just complexity.

  19. Another interesting thing I’ve noticed is this:

    I’ve known a lot of transgendered people, including some who transitioned from female to male or male to female, physically and/or socially.

    If I express no desire to undergo the same process, I am never told that I am choosing to remain pathological, or that I am overly identified with being female and should stop thinking that being female is all there is to me.

    (When, in some respects, a sex change would be less intrusive than autism cure.)

    And, of course, being trans is highly medicalized and pathologized. Usually.

    When I say “usually” I mean there are people who do get pushed to transition to male or female when they are not, and are sometimes forced into surgery to do so. People who experience this are generally intersexed. Being intersexed has been heavily pathologized, and intersexed people who identify as neither male nor female, or both male and female, are seen as aberrations or people who are choosing to be miserable.

    Jim Sinclair wrote:

    Later that year, my indoctrination into the cult of phallus fixation was continued at a special clinic to which my physician referred me. There I was seen by several Experts who took it for granted that since I did not want to be female, I must want to be male, and that therefore I would be very anxious to acquire a penis. One of their primary concerns seemed to be to dissuade me from undergoing a phalloplasty (plastic surgery to create a phallus using skin grafted from the thighs and abdomen) and to convince me of the benefits of using a prosthetic phallus instead. Neither option interested me. I listened politely to the horror stories about complications from phalloplasties, and to the enthusiastic descriptions of the virtues of prostheses. After showing me two prosthetic penises and explaining how I could get one made to be proportional to my body size and to exactly match my skin color, the Expert who was in charge of my case asked if I had any questions. I did: “What use are these? What would I do with one?” The Expert appeared to be quite surprised by these questions.

    […]

    When I was eighteen, I was seen by a different Expert, who wanted to involve me in a comprehensive gender reorientation program. His initial interview consisted of five questions: “How long have you been living as a male?” “Have you ever had sexual intercourse?” “Do you currently have a girlfriend?” “Do you have a boyfriend?” “How many times a week do you masturbate?” Based on my answers to the last four of these questions (no, no, no, and none), he concluded that my gender identity was too weak, and that I needed his help to learn more appropriate “masculine” behavior. When I told him that I wasn’t interested in learning the behaviors he had mentioned, he replied that it was necessary for me to learn them or I would become a miserable and unhappy person. In fact, he even offered to bet money that within five years, if I did not accept his recommendations, I would be a miserable and unhappy person. That was seven years ago. I accepted none of his recommendations, and I consider myself a happy and well-adjusted person with a strong sense of identity. But it’s a good thing I didn’t accept his bet; I’m sure I could never convince him that I’m not miserable and unhappy. After all, I still have not had sexual intercourse, I don’t have a girlfriend or a boyfriend, and I don’t masturbate. Furthermore, I’m not even “living as a male.”

    […] Yet when I told the above-mentioned surgeon that I did not want a phalloplasty, he predicted that if I did not either have a phalloplasty or accept reassignment as a female, I would become very depressed and would be likely to commit suicide. “You have to follow the rules. You can’t just have it your way all the time,” he scolded. Since it was my body, and I was the one who would have to live with the consequences of any surgery for the rest of my life, I thought I had an obligation to make sure that it was done my way. I found a different surgeon. And I haven’t commited suicide yet.

    (from Personal Definitions of Sexuality by Jim Sinclair, who is intersexed, xyr intersexuality page is very useful)

    There’s nothing more medical or unnatural about Jim having neither male nor female parts, than there is about me having female parts. Yet Jim has been consistently badgered and harassed into choosing between male and female (neither of which xe is). And nobody would badger or harass me into choosing between male and intersexed (neither of which I am). In fact, if I did somehow decide to transition to male or intersexed, people would badger or harass me to try to get me not to.

    Talk about double standards.

    But at any rate, that’s a good example of why this discussion seems strange to me. If saying I’d rather remain female doesn’t set off people’s “Oh no she believes being female is all there is to her!” alarms, then saying I’d rather remain autistic shouldn’t either. (And anyone who thinks there’s no innate disadvantages in being female has never had cramps, menstrual migraines, etc.)

  20. But at any rate, that’s a good example of why this discussion seems strange to me. If saying I’d rather remain female doesn’t set off people’s “Oh no she believes being female is all there is to her!” alarms, then saying I’d rather remain autistic shouldn’t either.

    Yeah. That’s a really good example. And it confounds (and frightens) me that sometimes, the very people who claim to be the most “scientific” and “unbiased” in their thinking are the ones most deeply and obviously affected by normative/status quo bias.

    Actually, that kind of bias is (I suspect) probably the root of some manifestations of “eugenic” thinking — people have this idea that not only is there an “optimal” way to be configured, but that they personally know what that optimal way is. And they don’t even realize that their notions of optimality are actually heavily influenced by local/cultural norms, faddism, and even advertising.

    I’m not trying to sound superior or anything in pointing this out, I’m just genuinely confused as to why so many people I’ve encountered seem so utterly and unwaveringly convinced that there are only one or two valid ways to exist.

    It’s difficult to articulate this, and I don’t know how good a job of it I can do right now (since I haven’t thought the language through very much yet), but I guess I sort of see life as something that has a near-infinite number of potential paths. And each path can lead the person who takes it (via a combination of choice and circumstance) to a place where it is possible to access things like joy and wonder.

    Only the thing is, not all paths (and by extension, not all lives) look alike. Some people seem to think that in order to access the good and beauty in life, your life has to superficially resemble what they associate with “a good life”, because somehow, those superficial factors get incorrectly conflated with essentials for happiness and “success”.

    So while some of these folks may “mean well” in trying to shift others’ lives toward what they see as “good”, they can actually end up making things a lot worse for the people they’re ostensibly trying to help. And then when the people they are trying to help seem unhappy, or seem to be “regressing”, etc., it gets blamed on being a certain type of person, rather than on living in an environment that doesn’t value or accommodate that type of person by default.

  21. “My point was not that there was no place for medicine (and I said that several times above). Only that it is not the only lens to view a person’s body through, and is not always the best lens to view a person’s body through.”

    Couldn’t agree more with this. I hope one day we (“health” professionals and their patients) can be a bit more flexible and nondefensive about the medical model, and admit that it’s an analogy. And like all analogies, it works better in some situations and for some people than others.

  22. Heh:
    Seems like we misunderstood one another’s points of view (that’s not difficult, actually.)
    First, you have no idea what “point of view” i’m coming from. Nor is it appropriate for you to “read in” some sort of anti-medical, anti-psychiatric agenda of your own.

    First, yes I did read your article thoroughly. Nice dodge, tho. (I just love it when people assume that the only reason one could object to something is because it was “misread”). Give me SOME credit, Amanda.
    (And yes, I Do have a somewhat “adversarial” approach to this, which I’ll get to later.)

    Secondly, thank you for clearing up the thing about dividing-lines. You probably have a different approach to “nuance” than me, but hey.
    I also get exactly where you’re coming from on the “cure being worse than the disease”. In my case, with current laser-technology etc., if they did laser-surgery or something to correct my vision (note that I did NOT use scare quotes there?), I would probably go blind. In other words, it would make the problem worse.
    But notice two things:
    1. I did NOT use “scare quotes”, nor do I reflexively refuse to acknowledge that my visual impairment IS actually an impairment. (Or are you going to dismiss that idea as just some sort of “optico-normative prejudice?”)

    2. Nor do I have a blog whose sole purpose seems to be “de-pathologizing” visual problems.

    3. Nor do I take any particular “pride” in being visually-impaired. (I’m not going to regard myself as ‘inferior’ because of it either. Taking “pride” in my visual problems would be as idiotic as taking ‘pride’ in the fact that I happen to be a White Male. I’ve been around people who take “pride” in their skin-color. It’s tedious in the extreme.

    Additionally, I gotta ask: exactly how wonderful can this vaunted “ungated access to information” be, if it renders you (on a fairly routine basis BY YOUR OWN WORDS) “a quivering lump?”

    Maybe — just perhaps — there are GOOD reasons for the “medicalization” of autism. Maybe taking “pride” in a characteristic you had no direct control over is…..ludicrous?

    I really detest “identity politics”, and those (unfortunate) people who get sucked into it.

  23. I’ll get to this later (my mom just got here), but “identity politics” is a whole set of widgets I don’t find myself sucked into. I do, however, have to use language, with all its limitations, including the tendency for people to project their own mental widgets onto it.

    “Pride” in this sense isn’t pride in a normal sense, it’s more like “not ashamed”. I’ve got to go, maybe others will answer the rest.

  24. Amanda:
    Did NOT mean to imply that you were neccesarily a proponent of “identity politics” as such. However, you do (regrettably) end up serving that purpose quite often.

    One of the interesting things I find is that people who happen to share one or two characteristics in common are essentially forced by the mainstream to view themselves in terms OF those characteristics, almost exclusively. Thus, you get the collossal social-fiction of the “Black community” or the “blind community”. The rise of “person-first” terminology (IE. “person with autism” or “person who is blind”) seems to me to be a really shabby substitute for actually realizing that the individuals who are pigeonholed INTO thse “communities” are individuals.

    Also, your use of “pride” to denote “not ashamed” is, quite frankly, sloppy. “I am not ashamed, therefore I am proud” is an ACTUAL instance of “excluded middle”, far more than my acknowledgement that autism (and visual impairedness) ARE actually problems — and not just because of “how other people treat us”.

    Have a good day Amanda. I hope the nerve block works, so you can become more functional again (grin!)

  25. I can offer my own understanding of what it means to be “proud” of a category membership, not sure if it would match Amanda’s or others’ meaning.

    It’s a different usage than the way we use “pride” when we’re talking about something we’ve accomplished. I’m proud of having finished a paper yesterday rather than procrastinating. When I say I’m proud to be a woman, or that I’m proud to be someone who’s been (at least at some times in my life) categorized as white trash, I don’t mean that I feel a sense of personal accomplishment for being those things. I mean that they are categories which have been historically devalued, and I’m proactively going out of my way to construct an identity for them that is positive. I do this both for my own psychological well-being and as part of a political effort to help these groups be recognized as consisting of valuable people.

  26. Henry: regarding the word “proud”, I agree that it can be problematic (inasmuch as some groups do use it in a boastful, self-aggrandizing manner). Nevertheless, there are contexts in which (as Amanda indicates) “proud” simply means “not ashamed”.

    Regarding your (Henry’s) own visual impairment: while it’s clear that you personally would rather not have this impairment, I hope you would agree that your value as a person is not diminished by its presence. Shame can be a useful emotion at times (e.g., it is appropriate for a person to feel ashamed if they see someone abusing a child or animal and have the means to stop it, but don’t), but shame has absolutely no place in assessment of a person’s physical or cognitive characteristics.

    Regardless, people who differ from the norm in particular ways (whether or not these ways are referred to as “disabilities”) are subject to social pressures to be ashamed of things that they shouldn’t be. Autistic people are pressured to “not look autistic” in public; children are subject to dubious “therapies” intended not to teach them to live successfully as an autistic, but to look as “normal” as possible.

    Everyone needs some kind of assistance — no person living in a cooperative society is truly “independent”, and if you think otherwise, try living off in the woods and making your own clothing, catching and gathering your own food, dealing with your own medical needs, etc. But people who have atypical assistance needs are often pressured to be ashamed of those needs. Leaving aside the word “pride” for the moment, would you not agree that it doesn’t make sense for people to be ashamed of having needs that differ from “normal” ones?

    None of what Amanda has said here has anything to do with “identity politics”, though I have noticed that quite often when anyone from a marginalized group attempts to press for social change surrounding the perception of that group, someone will almost invariably come along and accuse the person pressing for change of engaging in “identity politics”.

    And regarding your dismissal of the idea that “ungated access to information” can be a good thing — I experience something very similar, and while it CAN be overwhelming at times, it is also extremely useful in helping me learn, perceive patterns about the way things work, and in providing me with access to rich levels of beauty in existence. I would much rather learn ways to manage the negative effects of overload than have my brain re-wired so that I had more gates and filters between reality and my perception of it.

    I’m pretty sure that this “ungated access to information” is a large part of the reason why (at least in my case) I learned to read by the time I was two, why I can draw realistic objects well, why I often seem to notice things that other people don’t, etc. I don’t think my mode of perception is intrinsically superior to other modes, but it does have enough good points such that I’d never want to give it up even if doing so would make me function more “normally” or lend me the ability to drive, etc. Does that make sense? Or have you already formed all your conclusions regarding this subject, and are just trying to “win a debate” as opposed to actually learn about a perspective you might not have encountered previously?

  27. Henry asked:

    Additionally, I gotta ask: exactly how wonderful can this vaunted “ungated access to information” be, if it renders you (on a fairly routine basis BY YOUR OWN WORDS) “a quivering lump?”

    I don’t think Amanda said her way of processing was “wonderful.” She just said that it wasn’t inferior to non-autistic processing systems. (And that non-autistic processing systems aren’t perfect, either; it’s just that they’re more readily accommodated in our society than hers is).

    Like everyone else, there are some things I can do and some things I can’t. Some of the things I can’t do are thought of as essential for happiness or “living well” by lots of people. My life is good–I like it.

    I don’t think of my disability (or my gender, or my heritage, or my hometown, etc., etc) as “sacred.” But those things are all part of what makes me who I am. I also don’t think that other people’s deficits are more acceptable than mine.

  28. Ann C:
    Interesting points, but I disagree (wouldn’t you just know.)
    First, it is NOT just people who are “different” in some way who are “pressured to conform”: this isn’t a “tendency”, so much as a basic attribute of any and all “group” mentality. That’s why it’s doubly problematic when people like you (and Amanda, presumably), insist on “fouling your own nest” (so to speak) with the same sort of “group-member” mentality which has, ironically, been the primary means to OPPRESS those who differ along socially-unacceptable axes.

    Let’s be honest here:
    The percieved need to self-identify with a particular “community” is, to my way of thinking, a symptom of someone who is already psychologically beaten, primarily because it involves taking the FUNDAMENTAL WEAPON of those who have oppressed you, and attempting to turn it into a “badge of pride”.
    So you happen to share some characteristic or other with people who have “historically been oppressed”. And? What I mean here, is that just going “Well okay, you’re right about the classification-scheme you’ve used to opress us; we just wish you’d be “nicer” to us.” It’s an abdication of the most fundamental sort imaginable.

    Take the “black” community:
    There’s a group who have historically been oppressed, solely on the basis of a few characteristics (skin color, nose shape, etc.) The solution to this would be, of course, to rethink that classification. Do they do that? Not very many. Unfortunately, the currently-fashionable mindgame we all play says that there’s something called the “black community”, whose units are essentially interchangeable, and leads, even among the most “liberal” and well-meaning of people, to a “seen one, seen ’em all” mentality.

    That’s what I’m getting at here: Armstrong Williams (for example) is a Libertarian who happens to be black. There’s a big difference between him — his outlook and social advocacy and such — and that of, let’s say, Farrakhan.
    But the crass, socially-fashionable lumping of all blacks into some fictitious “black community” obscures that fact.

    Same with the visually-impaired. There are some (like myself) who acknowledge that it actually is a problem, but even those who try to gloss over that fact would probably not actively take “pride” in the fact that they are visually-impaired. The opposite of shame is not “pride”, and claiming that there is ANY legitimate context for such downright slovenly thinking will inevitably lead to a groupthink-mentality and an “us Vs. Them” mentality.

    Why exactly does Amanda (for example) choose to self-identify as “an autistic woman”, rather than as a “lesbian”, or an amateur-radio enthusiast? In the context of her particular brand of social advocacy it’s doubtless expedient for her to focus on the autism, but taking “pride” in it simply because one’s “group” has been “historically oppressed” is basically saying “lie down, and lick the feet that kick you.” What’s next? A “battered women pride day?”

    I don’t buy it. What is so difficult to understand about the fact that I acknowledge that my problems ARE problems, and then go on with my life? I don’t go to rallies, because I don’t need to be surrounded by a whole bunch of other people who have been forcibly grouped with me on the basis of a SINGLE set of characteristics.
    But you probably don’t get what I’m trying to say.

  29. One reason that I wasn’t sure you read what I said, is that you’re tying what I’ve written to entire ideologies that I don’t believe in, and then insisting I answer for beliefs I don’t have. I was explicit that I was only guessing at what you might be thinking, but you’re telling me what I’m thinking, and you’re telling me where I get my ideas, and why I have them, and any accuracy in what you say about them seems about as much as random chance.

    I repeatedly clarify that I don’t have those beliefs (and point back to instances of me actually saying I don’t have those beliefs), and you repeatedly insist that I do have those beliefs, seemingly because anyone who says/does such-and-such must have such-and-such a belief, or something.

    And even when you say something that I completely agree with, you put it in terms as if it’s somehow opposed to my viewpoint.

    And, yes, I think there must be something you don’t understand about what I said, because you keep saying I said things I did not say. I thought at first you might have skimmed what I wrote, because what you said does not make sense in terms of what I did write, and what I did mean by it. Generally if someone responds continually to things I did not say as if I said them (and/or insists that my saying one thing means I buy into an entire ideology that the other person happens to associate with that one thing), my assumption is that they did not understand what I said, because the alternatives (making a deliberate straw-man argument, willful misinterpretation, malice, etc) are things I don’t tend to accuse people of without stronger evidence than them not seeming to get what I’m saying.

    A person who disagrees with me, is someone who knows what I meant by something but believes something else about it. If you would phrase your disagreement in terms that indicated you actually understood what I said, I’d be more inclined to believe you understood what I said even if you didn’t agree with it. As things stand, you’re saying I said things I didn’t say, and I can’t see how far this conversation can go because (among other things) it requires too many attempts on my part to go into a really abstract mode of thinking to try to model what you might think I meant by just about every other thing you think you’re responding to in what I said.

    And on the combination of meds I’m on, that’s just not feasible.

    But I’ll say this: I’ve been referred to by friends as a ‘perpetual outsider’ for a reason — although I identify with and work with many ‘communities’ of the sort you describe, I never entirely fit into them, because each one (in general, not necessarily the specific people within it) tries to warp the entire world to fit their own agenda, heedless of what other people might need or want. And additionally demands everyone within it to believe the same things. Etc.

    And I don’t go to rallies.

    I think I’ve also repeatedly managed to demonstrate what I do and don’t view as a problem and why, and I sincerely doubt that what I write fails to acknowledge problems.

    So… yeah. Feel like I’m standing here and there’s this ghost standing next to me that someone’s having a conversation with and insisting it’s me. Not sure what to do about it, because the more I point to myself, the more the person talks to the ghost.

  30. Henry said: …but taking “pride” in it simply because one’s “group” has been “historically oppressed” is basically saying “lie down, and lick the feet that kick you.” What’s next? A “battered women pride day?”

    If you disagree with using the word “pride” to refer to a state of “not being ashamed”, that’s fine — I’m not going to quibble over that point.

    But I take great issue with your attempts to frame Amanda’s (and my) explanations/arguments as evidence of some kind of “groupthink” or “group mentality” or whatever you want to call it.

    I don’t write about ethics and stuff because I want to “identify with a group” — I don’t know where you’re getting that. I’ve always resisted that kind of thing, for as long as I can remember. I’m not a fan of granfalloons at all.

    Heck, when I was eight years old I wrote in a journal that I didn’t see myself as “either male or female”, just as “me”, because I thought gender was a really stupid way to divide people up, and I didn’t identify with any of the feminine stereotypes I came into contact with as it was.

    Nevertheless, I recognize that there are certain practical realities about being female that it would be ridiculous not to acknowledge.

    For instance, because I am a woman, I need to get checkups at the gynecologist’s every so often. Because I am a woman, I need to buy feminine hygiene products. Because I am a woman, I need my employers to have bathroom facilities I can use (e.g., not just male-only urinals). These things do not “define me”, and I most certainly do not get a warm, fuzzy feeling of community whenever I walk to the checkout line carrying a package of maxi-pads, but it would be dumb for me to insist that I wasn’t really female or that there are no issues that are common to most (if not all) women. Or that there wasn’t anything I liked about being female.

    I also live in California. There are practical realities associated with living in California — for instance, the necessity of learning what to do in the event of an earthquake, the necessity of paying California state taxes, and the particulars of California’s geography and climate. I don’t “define myself” by the fact that I live in California, but the fact that I live here does make it useful to learn about the practical realities of being here.

    And if people living in other states suddenly started running news articles and media sob-story pieces about how living in California was “devastating”, and that everyone here was miserable, and that the rest of the people had some moral obligation to send trains into California to cart all of us off to Minnesota or Alaska where we’d be able to “flourish properly”, you can bet I’d have something to say about it. Not because of some weird tribal identification with being “Californian”, but because California just happens to be where I live and I don’t want to be carted off in a train and put somewhere else on the basis of someone else’s mythology about my home state. In other words, I’d certainly have a practical interest in helping dispel the mythology, but that interest would have absolutely nothing to do with wanting to maintain a sense of “belonging” or “community” in the Californian Club. I couldn’t care less about that kind of thing, but I don’t want people spreading lies and misinformation about where I live and then using those lies to justify taking away my rights or the rights of my neighbors “for our own good”.

    The same goes for being autistic — being autistic means that there are practical realities in my life I need to deal with, and that my life goes a lot better when I’m acknowledging these realities than when I’m trying to ignore them or insist they don’t really exist. It also means that yes, there are other people who know similar realities, and that people who know these realities can benefit from swapping strategies, experiences, and suggestions with one another. And it means that yes, I should be allowed to say that I like some parts of being autistic. Just as I like some parts of being female, and some parts of living in California.

    If you think that is “identity politics”, I don’t know what else to tell you.

  31. Henry, people set-intersect with others on the basis of common interests. (It’s going to be the really odd one who identifies only with one particular group to the wholesale exclusion of others.) Amanda has made it clear in her writings that she identifies with elements of a number of different groups and movements competing for her time and interest.

    When others with like minded interests do too, they take the form of a “community”–for that topic of interest.

    Individuals with vastly different philosophies or histories tend to find commonality somewhere. (They may like the same brand of takeout pizza, or come together for the same musician’s performance.) Then those in themselves comprise their own “communities.”

    This is a compositional outlet for her (as well as to converse, opine, persuade, correct, spar with others): (disability-rights) political, anthropological, spiritual, mostly with an “autistic community” bent–this one happens to speak prevailingly on issues topical to her appraisal of an “autistic community” which she feels she intersects with, like some other people with similar issues do. (Who knows, she may even have other blogs that address other things that we don’t even know about, with their own sets of followers.) She’s not even defined by blogging.

    The original topic of this thread was clear: People are temples, who have a right not only to prioritize (an understatement), but to set personally directed limits, on what some others would do to them if they were allowed that authority. There are plenty of casualties in the historical record when those rights are not respected; you can really damage someone with the practice of quackery. (But she even has made abundantly clear in certain threads that her particular makeup results in certain beautiful, invaluable (side?)-benefits (perceptional, cognitive, empathic, even in some ways physiological to name a few) in addition to those numerous complaints she never hesitates to mention.)

    Where would you draw lines of demarcation then? If it weren’t up to her, how would you have her (or any of us) changed? What zones of familiarity, comfort–even pleasure–would be invaded in the process? How many procedures? At what cost in iatrogenic consequences, physiological and psychological? Or in personal liberty? Or in dollars? Those are all the things that are “attached.”

    Check out a seriously great piece of art–“Seconds” (1966) by John Frankenheimer. Available on DVD. (Parts of “The Game” a few years ago were nicked from it.)

    As with anybody, let her decide what she would change about herself. Penultimately, unless you have lung disease or something, no one really wants to change a whole lot neurophysiologically–identity is tied up in it. We all relax and chill our own ways.

    I haven’t seen the word “pride” used anywhere on her blog–maybe it is. But the word when mentioned in the world of humanity is basically pride in standing up for one’s self.

  32. Also, the thing about some things being problematic applies to most people’s lives.

    Human beings can’t fly. Many human beings wish they could. However, in order to change a human being into a flighted animal (without artificial external aids such as hot air balloons, airplanes, etc) the entire bone structure, metabolism, brain, inner ear, size, and several other aspects of the standard human body, would have to be changed.

    If such a change were available, how many humans would be willing to pay that price to lose the inconvenience of not being a flighted animal?

    I suspect, if they truly knew what that price was, they’d rather go back to using assistive technology to fly rather than being cured of their non-flighted state, even if being flighted would save their life in some situations, and make other situations far more convenient. And this despite the fact that many humans wish they could fly. A few might choose to pay that price, but not a lot, and it’d be a personal choice, not a matter of everyone who didn’t choose to pay that price being medicalized or told that they just identified too much with a group.

  33. I think that’s an interesting analogy particularly because I don’t think a lot of folks take into account that human ability to fly *would* require that much overhauling . . . I think they’re just picturing slapping angel wings on somebody’s back, or something. Perhaps the same analogy applies to folks’ idea of “cure” — that it’s really just a simple maneuver that involves attaching/detaching one element that’s not necessarily infiltrated into the rest of the “being”. Or did you say that already? ;)

  34. Pingback: Time to read this again « reSISTERance

  35. Amanda, your whole argument seems to be that you were born with 100% of your autistic traits… and that’s what you are supposed to be… and don’t want a cure… so on.

    If i could prove to you that less than 10% of the traits are biological and the rest was acquired in your early life, would that change your views? would you then accept a treatment that removes the other 90%?

  36. No, my argument is not that things are all things I was born with, and I am not talking, above, solely about autism. Nobody is born with all of the traits they will acquire on their way to adulthood. Some of the things I described above are clearly acquired things, yet they are still things that I would think carefully about before changing. Some are things I could change, some are not.

    I remember you as someone who claimed to have found an exercise that could cure autism or something. I’d be interested to know what you think it is, certainly, and which parts you think are innate versus which parts you think are learned, but that won’t necessarily change anything.

    You might be interested, in fact, in this post, where I go into some traits that are often attributed to autistic people but that I think are often acquired and not actually useful except for when surviving awful situations.

    Anyway… yeah, if you’d do more than hint around I’d be happier.

  37. And i’d be happier if i could talk to someone without them pushing me around to reveal the cure. I feel so alone right now. When i was a kid i used to feel like an alien among humans, there was nobody like me. I was 23 years old when i discovered autism and it was so cool to know there was millions of people going through the same life as me, and i could share experiences and ask questions to them. Then i got cured and i was alone again, there has never been anyone like what i am right now, you have no idea how many times a day i ask myself how can a physical exercise change my psychology so much (i mean come on, even my voice changed from monotone to “multitone”), and i have no one to ask questions to. Someone told me today that “no respectable researcher has ever suggested what you mention, so you are on you own”. So i’m on my own. Don’t worry my “therapy” will be public knowledge before year’s end, that is my job.

    Regarding the link to your other post, yea, my father spent 20 years trying to make me social and polite, he only succeeded in making me hate the “pretend to be normal” game, that would be the main reason why i started looking for “alternative” solutions to autism, i wasn’t willing to pretend, and i was too old to keep living locked in my room with no job, friends, etc.

  38. Pingback: Autism Awareness Month: some links. | Adventures in Ethics and Science

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