Almost Alike: A Medical Cautionary Tale

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

• Bronchiectasis (high-resolution CT scan)
• Frequent bowel obstructions (x-ray)
• Central sleep apnea (sleep study)
• Obstructive sleep apnea (sleep study)
• Early-onset gallbladder disease (ultrasound)
• Exotropia (eye exam)
• Gastroparesis (gastric emptying scan)
• GERD – reflux (barium swallow)
• Esophageal motility problems (barium swallow)
• Dysphagia (barium swallow)
• High cholesterol (blood test)
• Hypermobility syndrome (Brighton criteria)
• Myasthenia gravis or related condition (single fiber EMG)
• Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
• Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

“We won’t help you until you stop acting like you’re in pain.”

Last night I engaged in a very interesting conversation with a guy who works at the service that helps me out at night.

I was in a lot of pain. By a lot of pain, I mean I was crying and periodically screaming. I don’t cry from pain usually. I didn’t cry when my gallbladder was well into emergency stage, I just went really quiet. If I’m crying from pain, it’s serious. And this pain (and related movement restrictions) was serious enough that a spinal tap was done when I finally did get to the emergency room, because it sounded to them a lot like meningitis. (Fortunately it wasn’t.)

Anyway, I was sitting there trying to string sentences together, while barely able to keep auditory comprehension going, and trying to push through all the pain-induced shutdown to actually talk to the guy. And I’d periodically get the wording wrong or scream in half-pain half-linguistic-frustration or accidentally interrupt him. He told me that he would not help me until I was able to “respect” him the way he “respected” me.

You know… usually, if, for instance, someone’s finger’s cut off, and they’re running around cussing and screaming and not being very polite, other people kind of grasp why they’re acting like that and don’t act like the person is being disrespectful on purpose. Somehow, if the person has some kind of disability label however, this becomes a “behavior problem”. I used to know a guy who went untreated for pain for years, with a dislocated hip, because he had a developmental disability and all the things he did because of the pain were considered “bad behavior”. They didn’t bother looking to see if he was in pain. Hint: Physical pain isn’t behavioral, and treating it as behavioral is a violation of our rights.

(And if I’m not tending to my blog enough, now you know part of the reason. Sorry about that.)

Updated blog theme.

The theme was in bad need of updating anyway, and we’ve just changed servers at autistics.org (and various complications of that, rather than my mucking with themes, is what took my blog down the other day) which seemed as good a time to update as any. And I’m stuck inside for the most part until the pollen count goes down, and have little else to do. So I updated it.

The picture at the top is the view from my old apartment window in California. It’s a view I’m quite familiar with because my old apartment was inaccessible to me in many ways (not just wheelchair — it was also too hot and the flooring patterns made me get stuck more easily) and I didn’t get the chance to move around a lot the way I do now. Plus my neuropathic pain condition wasn’t treated for part of that time (the last few months before I got it treated I spent so long in one spot that I had to recondition myself to sit up afterwards), and I hadn’t got a wheelchair yet at all for part of that time (which drastically reduced my activity level as well). So I spent a lot of time looking out that window, and am very familiar with that view.

It actually fits with the theme of this blog in many ways, because I remember getting an email from someone who couldn’t imagine being stuck in one place for as long as I sometimes have without wanting to die or something, and I remember thinking that there’s actually stuff you miss by not being stuck in one place for that long, just as there’s stuff you miss when you are. I know every detail of that tree, of the lives of the birds in the birdcage across the courtyard, of the various plants, and so forth, to a level that most people who just walked by or glanced out the window sometimes would not. There’s a whole lot of life to be experienced whether you’re stuck in one place or moving around all over. That’s part of the basis for my post Life’s Infinite Richness.

I’m still working out some of the annoying formatting problems of the new theme, but everything should be back to normal relatively soon. For instance, the stylesheet was inexplicably making all images left-oriented and inline regardless of where I tried to put them, and I fixed that, but there’s still a few more minor irritating bits to work out. (Such as link categories, which have stopped holding any meaning even before I changed themes.)

Can any Firefox users tell me whether the comment fields are now autofilling to something other than the name you usually use? Mine are inexplicably filling in with Ettina’s name, my email address, and Ettina’s Blogger profile. But they’re only doing it in Firefox, not Konqueror.

“…knew the moment had arrived for killing the past and coming back to life…”

I got treated fully and consistently like a real person throughout the entire conference I just went to last week [note: “conference” is not the same as “MIT”, this was not at MIT], to a degree that I am still stunned about. But it was all done in a very natural way. There was just this background knowledge that people are people.

And one thing I learned from that is that not everything that I’ve attributed, and seen others attribute, to autism, necessarily is. Because in being treated like a person, actively rather than passively, by the majority of a large group of people around me, I discovered aspects of myself that I didn’t know existed, and whose non-existence I’d previously ascribed to being autistic.

Which got me to wondering something.

How many of the emotional and social problems autistic people have are actually related to being autistic?

I’d be willing to bet it’s less than it looks like.

I have a depth of emotion and social relatedness that I did not know existed until roughly last week. It has totally changed the way I perceive myself, and it has totally changed the way I perceive other people. It’s very difficult to perceive certain aspects of people in general if you don’t know they exist, and if the reason you don’t know they exist is because you’ve basically blocked them out of awareness in order to survive.

I was an incredibly emotionally sensitive and empathetic kid — like a lot of autistic people I’ve talked to, actually. But as an autistic kid I was also a walking target the moment I met other kids. Autistic kids, for some reason, seem to get more than the usual share of this. In fact before we moved when I was still a baby, my older brother was the scapegoat of the entire town we lived in. And as I got into school, I became as subject to bullying by teachers as I was by other students.

My initial reaction was just sheer emotional overload. I came home and screamed and cried for hours. I couldn’t understand why people hated me so much, I hadn’t done anything to them other than exist near them. And eventually I just went numb. Nothing the few people in my life who did treat me like a person could do, was enough to counteract the fact that in the majority of my life I was treated more like a target. The only way I could deal with it was to cut off the parts of me that knew what it was like to be treated like a person.

I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?

Because even the most well-meaning of our relatives can also cause problems for us in this regard. As autistic people, our responses to our parents are often (not always) different in some way than non-autistic people. Many parents unfamiliar with autism will conclude that we are uninterested in them, or even averse to their presence. Even some who see us as socially related to them will be told by doctors that, if we are autistic, this is an illusion, and that autistic children don’t relate to our parents. (Scientific studies, by the way, say otherwise. We do in fact generally have the same degree of attachment to our parents as any other kids.) The myth of the refrigerator parent has been replaced with the myth of the refrigerator child, and many of our parents will believe the new refrigerator child myth.

This in turn affects how they relate to us. If you think that your child is indifferent to you, even rejecting you, you treat them differently than you would treat a child who isn’t. You might either spend less time with them, or spend an inordinate amount of time trying to force them to connect to you in ways that might be physically uncomfortable to them. You might talk in the child’s presence as if the child is not there and cannot hear you. You might characterize the child as lacking in some fundamental attribute of humanity. You might bombard the child with overbearing social approaches that cause the child physical pain without meaning to.

Any and all of which can give us a pretty warped experience of social situations within our own families. Note: I am not trying to blame parents for children being autistic, or for their own ignorance of what being autistic is. I know that discussing parenting in autism in this manner is a taboo subject because of the old psychoanalytic theories of autism (theories I’m familiar with because my own mother was subject to them even as recently as the nineties and I’m very aware of how much pain they cause for families). But I know no way to discuss the effects of growing up autistic around families who don’t understand how to relate to autistic children, without getting into these topics, taboo or not.

An interesting aspect of this in action was the “Autism Every Day” video in fact. I showed the video to the people at the MIT Media Lab recently, but instead of watching it straight through, we stopped it and focused on the social behavior of the children in the video, and the parents in the video. The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings. We concluded that somehow through the camera person focusing on the mothers, combined with the mothers focusing on the camera people, the viewer’s focus was not on the social overtures of the children, who were then possible to describe as not engaging in social overtures even when they were very clearly affectionate, social, and concerned with their parents’ feelings.

So again, how do we measure innate level of social skill in this context? This is a context where autistic people’s parents are somehow (possibly by training from doctors, possibly through instinctively looking for a different set of social cues than the ones we use, possibly because of some other construction they have in their heads that overrides what’s in front of them) clearly not noticing our social approaches or our concern for them.

But it is also a context where many of the things — such as eye contact and physical contact — often used by parents to show affection for their children either panic us or cause us physical pain, and where our “emotional growth” might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis. Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations. To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

So most of the family situations available to autistic people are some combination of the following, at least at first:

1. Not noticing or understanding the way in which we show affection, social relatedness, and emotion.

2. Using, with good intentions, social approaches that cause pain or fear in us.

3. Forcing social approaches that cause pain or fear in us in the hopes that it will make us into more socially related people.

4. Gauging the appropriateness of our social development in terms of our ability to silently endure that pain and fear.

5. Lacking the sort of social approaches that we can actually process and handle as autistic people.

6. Hearing things said about ourselves, in our presence, that are not true but that we might absorb really early. (Both hostile things and innocent misinformation, potentially.)

This is not to say that our families don’t love us, don’t care about us, don’t want to be doing the right thing. We are born into the usual range of families that any other group of people are born into. But these sorts of things happen even in most well-intentioned and loving families.

And most of our social experiences outside the family are of some combination of rejection, ostracism, hostility, and hate.

What does this do to us?

Can anyone say that in all the time that autistic people have been studied, from the days of the refrigerator mother theory to modern-day genetic theories, anyone has ever separated out what is intrinsic to autistic perceptual structures and what is other things, such as the adaptations that we have to make to a world that is so consistently hostile to us even in environments that would seem loving to most non-autistic children (and we’re often in environments that would not even seem that)?

Because I don’t think they have.

I still have the perceptual system that makes me autistic. But many emotional and social connections are no longer walled off the way I had to make them to survive earlier in life. It’s sort of like the bruised nerve I just got at the dentist, that started out making half of my chin numb, then flooded with pain, and now subsiding to something near normal. I’m past being numb, and getting past the flood of pain, and getting to some level of whatever is normal for me.

There was a level of detachedness, selfishness (the genuine thing, not something mistaken for it), and other things, that were there almost all the time before but have melted away along with the numbness. (I know I must have caused problems for people with some of this stuff. I’m sorry.) I can feel parts of myself internally that I couldn’t before, and I can now perceive parts of other people that I couldn’t before because I was too busy denying that they existed in myself. Things are changing very fast, and although this was gradual in coming, it feels sudden.

And I want to know how many of my emotional and social problems of that nature could be truly blamed on autism (the cognitive and perceptual state), and how many could be blamed on growing up autistic in an extremely hostile environment for autistic people. And I want to know how much this discrepancy exists for other autistic people.

I want to know what a world would look like where autistic people were really and truly accepted in all areas of life, and interacted with in ways that were accessible to us. At least, to the extent anyone else is. I wonder if we would look more empathetic and more social if we didn’t have to deaden those parts of us to survive the onslaught that awaits most of us at school and other places, and if we were around enough people who resembled us that we had early exposure to people whose body language and such made sense to us. I wonder what people with autistic perceptual systems would look like in an autistic-friendly world, and whether our differences would still be too often described in terms of “social skills” and so forth.

Chasing Oblivion

A conversation last night reminded me to write about this. (Note: Now that I’m coming back to this, I have no idea when I started writing this, but it sure wasn’t last night.)

When I was a kid, I really didn’t want to exist. At least, that’s how I conceived of it at the time. I was not suicidal. I did not want to die. I just didn’t want to be there. The manner in which I started head-banging was not as the impulsive action it evolved into (and it did evolve into that), but I had heard a person could be knocked unconscious if the right part of the head was hit, so I set about trying to hit it over and over. Unconsciousness sounded like non-existence, and non-existence sounded pleasant.

It sounded pleasant because I was on a kind of overdrive that I have heard autistic adults talk about still being in. Some of them have sustained it their whole lives. I only sustained it about ten years, if that (maybe more like six or seven).

That would be ten years of doing incomprehensible things, for reasons I could not understand, with a vague fear that something awful would happen if I stopped, and being continually bombarded with more information than I could understand or handle. This is not to say there were not good things going on in this time period, but outside of specific incidents, I mostly remember a blur of shapes and sounds and words and pain. (Severe physical pain, which went untreated for more like 20 years.)

What I was thinking throughout all this, was about getting back to the nothingness that my mind could sometimes get into. I pressed myself onto the floor hoping that I would become the cool smooth surface of the floor instead of the jagged burning surface of my body. In school I ran out of the classroom and ran the paper towel dispenser in the bathroom all the way out of paper towels, ran the soap dispenser out of soap, and pressed my face on anything flat and cold I could find. When not doing other things, at home I tried to disappear in my room by inventing all kinds of scenarios where everything around me slowly faded out of existence, trying to call up the nothingness. Or else banging my head with things, trying to call it up another way.

Some people have tried to characterize some of what I was doing outwardly in this time period as pretending to be normal. That’s not actually a possibility. Doing that would have required a level of understanding that I didn’t have at the time. A better characterization would be, I was doing what I thought I had to do, with not enough capacity left over to reflect on why I had to or what it was I was doing.

To me, the world — in general — usually felt like one giant thing attacking me from all sides. I don’t mean in a paranoid sense like “people were out to get me” (although kids certainly weren’t very nice to me and teachers certainly nearly always took their side), but on more the level of total bombardment with something giant, chaotic, incomprehensible, and pain-inducing.

As I got older, I was put in situations where I had less and less time to do all these things, and so I started doing more of them in the open than I’d previously done. I lost most capacity for the appearance of standard learning, which people didn’t notice for somewhere between one and three years (I noticed right away). And all the other changes I’ve discussed during that time period were happening, so I was pretty disoriented.

I tried taking refuge in nonsense, since the world seemed like nonsense to me anyway. I also started preferring sleeping to being awake, and trying to treat being awake as if I was still dreaming. In my dreams I often fell into nothingness, which felt wonderful, so I kept trying for it while I was awake. I even tried running into a window (ground-level, it didn’t break) because in a dream I had run through a window and been absorbed into the cold glassiness and disappeared. And then when I got old enough to understand what suicide was I tried that (but was thankfully horrible at it).

A lot of people would attribute all this to how horrible autism is or something, but I don’t think it’s that. I think it’s the result of trying to function beyond your capacity day in and day out with no understanding of why and how to stop. These days, if I start getting an intense longing for oblivion, I understand that I am on the verge of shutdown, and need to lie down or at least do something less overloading. While I am still considered by at least one friend a “workaholic,” I actually push myself far less than I did when I was a kid, because I know what the results are — I don’t get any further that way, but I get a lot more burned out.

There’s a real problem, though, with the way things are set up (and I don’t mean the brain), when a little kid’s fondest dream is to not exist. I really worry about all the kids who are put through rigorous programs that make them do more and more, and the more they can do the more work is piled on them, to the point where their systems can’t take it. And the adults forced into that position from lack of readily-available assistance. I wonder how many of them just wish they could disappear, like I used to wish.

A one-thing-a-month sort of meme and random other crap.

I think some combination of weather changes and other factors is really screwing with pain levels today. Right now, I seem to have joint pain all over (especially, though, my left jaw and both hands), a migraine, phantom gallbladder pain (which seems to for some odd reason flare with the migraines), and some kind of stomach pain (probably from the crappy food I had to eat for lunch, since staff didn’t cook in time and I had to get something at a convenience store instead). And on top of/underneath all that, the usual neuropathic pain that seems to be really, really bound and determined to convince my whole body it’s either sunburned or being ironed (and any spot that’s already in pain, gets extra special bonus pain magnification a certain radius around it complete with weird icy-burning sensations). And I seem to be at that stage where my body runs out of natural painkillers and just starts screaming (although I just discovered that touching near-boiling water was extremely pleasant, if dangerous, and then ran water over my hands as hot as I dared without scalding them for awhile, and feel a little better).

That is to say, if I seem grumpy today, that may be an explanation, if not an excuse. I’m currently mixing up a home remedy I use for pain sometimes in emergencies, in the hope that I won’t bug the crap out of my neighbor when we eat New Year’s Eve dinner. I’ve been alternately online getting grouchier than I intend to, or lying in bed and trying to zone out.

Anyway, here’s one of those things people do during the New Year. I’m not totally into this whole New Year thing. It’s not a point where I tend to mark the beginning and end of years, if I do so at all. It seems arbitrary. Nothing seems qualitatively different about January as opposed to December. I tend to mark years in some more amorphous way when I do at all.

But anyway, regardless, people have been doing this thing where they post the first line from each month on their blog.

January: It seems like there’s a couple ways of portraying autistic adults in most books on the topic.

February: I am a mediocre hammered dulcimer player.

March: You were the ones who watched how we moved, then said what that must mean.

April: I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.

May: It’s Blogging Against Disablism Day.

June: I’ve long thought of getting a t-shirt that says “I’m the monster you met on the Internet.”

July: A famous quote attributed to Susan B. Anthony (who probably, like most feminists of her time, had atrocious views on disability, among other things, but oh well):

August: This is largely in response to comments on a recent post.

September: I was tagged for this twice, and finally finished it.

October: This still isn’t the post I’ve been trying to write, which is more political in nature.

November: I made the following video after observing a lot of things.

December: The following is a quote (used with permission) from a chat with Laura Tisoncik tonight (all the the following are her words, not mine, but they express something I’ve been trying to express for awhile):

I don’t like this version of a one-a-month meme that much though. I think I’ll write my own in a minute.

The hell of being asked questions.

I am not sure if people totally understand what they’re dealing with when they try to ask me questions. I’m part of a study right now. I am being asked which autism organizations I belong to. I have been trying for months to answer their damned question. They say they are asking things in open-ended ways so that they can get my idea of what’s important rather than theirs. Fair enough. But ask these questions and it’s like pouring gibberish into my brain and expecting sense to come out.

I don’t think people get it. I really don’t think people get it. I am sitting here trying to write this. I have been trying to write this for months. It’s a simple question and I want to answer it. I want to answer it. I want to give them the answer. The answer is in my head. And the more I push the closer I get to a full-bore out-of-control meltdown.

If I were going to die tomorrow unless I answered this question, I still couldn’t answer the question.

Hand me the belt that I used at the Autism National Committee conference and I will be able to tell you all about how I used it to get around, and in the process of telling you that, I will be able to tell you that I belong to the Autism National Committee.

Ask me randomly what autism organizations I belong to and it is random chance whether I will even be able to tell you I belong to the Autism National Committee. And that is only one of the ones I belong to. I only came up with that just now because the belt was near me.

You’re expecting words to trigger memory, and more than that, words to trigger a particular process for accessing a particular kind of memory on purpose, and that’s not a reasonable expectation of many autistic people. (I know autistic people who are baffled by the fact that this is a problem for me, but it’s no less real for their lack of this as a problem.)

And this is one of those assumptions that goes well into the zone of dangerous, because it can create any of the following scenarios in medical contexts:

“But you would have mentioned it if you were really in pain, starving, dehydrated, whatever. You can write essays, after all.” (The ability to write essays does not grant me the ability to conjure up words in response to situations on demand in specific ways accepted by some general social consensus I was never invited to.)

“The first time you mentioned pain is the first time pain became a problem.” (I had painful migraines — that seriously restricted my activities when they happened — for years before I knew how to associate what was going on with the notion of what a migraine was, and then put into words what had happened.)

“You never mentioned heartburn before you heard someone describing reflux, so you must have decided you had it when you heard them saying what reflux was.” (That’s not what the lab tests showed. I felt the sensation, often amplified by neuropathic pain into something truly agonizing, for years before I knew what to call it. And I remember having it since I was very young, my parents remember it since I was a baby. I needed the description to trigger any mention of it in regards to myself though, and that is often true of many things in my life.)

“You only mentioned part of the pain you were experiencing, so you’re not in any other pain.” (It’s the only part that words came up with right now, the rest is there, may even be worse, but I won’t necessarily mention it. This is how I got reflux treated before I got neuropathic pain — far more severe — treated, even when the neuropathic pain had me literally writhing around and moaning.)

So as usual, this isn’t just annoying, but dangerous.

Right now, the situation is just annoying though. I’m not sure people understand. I can’t do this to save my life — I have literally not done this to save my life, on several occasions. There are ways to get information out of me, but these questions will not extract the information, or if they do, it’s only over so long that by the time the information is out it’ll probably be past the deadline. Wanting to tell you makes no difference.

I know there are autistics out there who think that wanting to do things and not doing them is some kind of perverse unconscious self-hatred. How does a person explain this to someone who can just hear a question like this and remember everything they need to know? Any more than I could, before, explain sitting within feet of food and not being able to coordinate everything (by which I don’t just mean motor coordination) enough to eat it. This isn’t self-hatred, this isn’t some kind of backhanded attempt to injure myself, this is a wall I hit that can only be gotten around by not taking this road in the first place.

“It’s on purpose. Really.”

I came up with this post yesterday, but was not feeling great so I couldn’t do the new-word-generation required to turn it into a blog post.

I’m working on a video that deals in part with what disabled children often think about what’s in their futures. While I’m not likely to include much of what I’m about to write in this video — it’s a bit tangential — some of the stuff I was coming up with for the video reminded me of it.

In The Me in the Mirror, Connie Panzarino talks about growing up with spinal muscular atrophy. She was told things in physical therapy like “You can move your legs, you just won’t.” She has a long memory — back into babyhood — and describes her life starting at a very young age. And, among other things, she became convinced that she could walk and just didn’t want to enough. She thought of herself as different from other physically disabled children she knew, because she believed that she, unlike them, had this secret that she really could walk and one day would once she decided to.

It’s important to note, about her and about what I’m about to describe about myself, that in a less ableist society, disabled people would not be likely to end up thinking this way, any more than most people (other than kids who’ve watched too much Superman, and adults who’ve read too much New Age garbage) think they could fly if they really tried. It’s not “only natural” to believe these things, it’s a product of growing up in a society that really doesn’t take people like you into account, in a big way. What I am about to describe is not pretty, is not desirable, and was not fair to the disabled people around me. But I was a kid, kids think things like that in societies like this one. I’m writing this — and a lot of other things — because no kid should have to grow up thinking what I did.

Anyway, I can remember the time period when my abilities started shifting around. When I say shifted around, I mean like someone came into my head and rearranged everything while I was asleep. I can’t remember if it was gradual or sudden. I don’t know how much of it was truly the loss of certain abilities, and how much was the loss of appearance of certain abilities that had been only tenuous and illusory to begin with. I do know I gained other abilities during that time period, that I’d never shown any remote talent in before. I also know I gained awareness of certain things I did, and could not do, at that time, awareness that I did not have before. And I know that some things really did vanish. Basically there was a giant shuffle taking place in my head, beyond the usual shuffling of puberty.

At some point, I convinced myself that unlike other people, who could not help being like me, I was different. I was better. (Told you this wasn’t very nice or fair to others.) I was only being like me because I was choosing to be an individual. Others like me were only being like me because they couldn’t help it. I tried to distance myself as far as possible, including from people who were in reality far more capable than I was at a lot of things. I, unlike them, could cease to do certain things, or start doing others, any time I wanted. I just… never seemed to “want” to.

This was backed up by, among other things, shutdown. I would experience a longing for shutdown when I was overloaded, and there it would come. This must mean that I controlled it and could will myself not to. Even though I couldn’t. It did not cross my mind that having an extreme longing for shutdown is kind of like an extreme longing for sleep: It’s a biological need expressing itself as a “want”, and if you manage to put it off for any length of time, biology will take over.

While this gave me a false sense of control, it also meant that I felt guilty a lot, and as if I was a horribly selfish person (in ways other than I was actually being selfish — such as by adopting this belief system, which is truly very self-absorbed). Who but a horribly selfish person would choose to flop on their back and wave their hands and objects in front of their face while other people around them “needed” them to be doing something different? Who but a horribly selfish person would delay an entire group of people by freezing in place while overloaded, and force everyone around them to try to figure out what was wrong? Who but a horribly selfish person would lose control of their body in all the myriad ways that I did all day every day, forcing other people to deal with the consequences?

Because I did. There were a number of things that were simply too painful to think about before I realized I didn’t actually cause them.

The time that being fed a combination of chocolate and espresso beans meant that I ran around wildly and then shut down in both movement and comprehension so far that I was sent to a neurologist in the aftermath.

The amount of time I spent staring at nothing, doing nothing.

The fact that school and language were both incomprehensible far more often than not.

The fact that I acted like, and felt like, I did not understand things, only to understand them far later (“must have understood all along”).

The fact that I spent most of my time either doing repetitive movements, not moving at all, absorbed in the sensory experience of various objects, or thinking about one topic and only one topic.

The fact that I spent a lot of the time not thinking in the usual sense of the word. (These days, I’d consider it thinking, but it’s not what people are taught thinking is.)

The fact that I couldn’t get my mouth to say much, if anything, that was in my head, and often couldn’t even get the thing to move at all.

The fact that I spent much of the time babbling nonsense unrelated to my thoughts when I could get anything out.

The fact that there was only a tiny amount of stimulation I could tolerate before everything went haywire.

The fact that I was in excruciating physical pain all the time and frequently reacted to it.

The fact that I did things like flop on the floor, run away screaming, make certain kinds of motions, and hide inside and under things, spin around in circles a lot, that nobody around me was doing.

All of these things and more troubled me greatly, not least because I thought I must be doing all of them on purpose, behind my own back, subconsciously, or something.

This, by the way, is why it’s a really good idea to discuss, and discuss often and accurately, being autistic, with your kids, even if you think they are too young to understand. They will come up with far worse explanations than anything you could possibly say to them.

Anyway, I believed that I could stop these things any time I wanted to. I believed this all the way into institutions (at least part of the time), despite the evidence that I could not. I decided that I must really want to be in them if I acted in the ways that got me put in them. I decided I was the most twisted, selfish, and bizarre person on the planet. Nobody knew this about me, I came up with it on my own, although plenty of people reinforced it along the way without knowing it. It was my worst secret and I dreaded the day that I would be capable of telling it and put on the spot. Everyone around me who acted just like me couldn’t help it, but, I was convinced, I could, and that made me both better and worse than them.

It became worse after a doctor harnessed my echolalia and echopraxia to get me to act certain ways that were actually out of conjunction with who I was. I said before that I don’t feel trapped in my body, meaning I don’t feel trapped simply by appearing disabled. By the time that guy got through with me, I definitely felt trapped, because what he had me doing was so far out of sync with anything I was thinking or experiencing, further than anything every had been. When, even in the face of all this, I acted from things like overload and incomprehension that were not going away, when I slammed my fists into my head over and over, when I didn’t understand what was going on, when I still couldn’t communicate, and yet this guy was considering me “much improved”, my mind twisted into more knots than it ever had been.

Nobody should have to believe that they are, consciously or subconsciously, causing themselves to be autistic. I happened to fall into the clutches of a psychotherapist who was a holdover from the old psychodynamic-approach days. This. Did. Not. Help. To put it mildly.

But this kind of bizarre rationalization can only happen in a world where it is made bad to be autistic. It’s not that the truth I wasn’t facing was such an awful truth, it was that this truth was made awful by the way autistic people are viewed and treated. By the fact that I was not being offered any true guidance or assistance that would have helped me. By the fact that there was no roadmap and the only roadmaps I had, told me I would be institutionalized the rest of my life and that this was the only fate possible for people like me (unless we could be miraculously cured).

There is no reason that people should have to believe things like this about themselves (both that some aspect of themselves is horrible, and that they themselves are the ones causing it). But it is disturbingly common that people do.

Hey, watch it, that’s attached!

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.

Fear of disability is not what it seems.

Two nights ago I had a long conversation with a friend.

She was in bed because she’s got a pressure sore forming on her butt. I was lying on a mat on the floor because I couldn’t hold my body upright and think at the same time.

We were talking about the stuff that normally gets called disability, or impairment, or whatever the current term is. The differences in our bodies, that are medicalized, and defined as horrible fates worse than death and so forth.

We were talking about our total lack of fear in the idea of acquiring any particular currently-pathologized condition.

She talked about how “chronic, intractable pain” is an everyday reality for her, and it’s only going to get worse with time. I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity. I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.

I started laughing, because that seems like an absurd idea to me. My friend said, sarcastically, “Oh, but you’re laughing. If you’re laughing, you can’t be in any pain.”

Then we got into migraines. I’ve had one for a few years straight now. My friend said, “It’s documented that people sometimes kill themselves over migraines, so that’s got to be considered one of the nastier forms of pain.”

My friend recently had a knee injury and was unable to get out of her wheelchair at all (normally she can stand for brief periods) without extensive assistance. She talked about how that isn’t a particularly awful thing in and of itself. She also once went through extreme spinal surgery and only got a day’s worth of pain drugs afterwards.

I freeze in place on a regular basis, sometimes to the point where even my eyes are not under my control, right down to pupils staying at a fixed, large size and my eyes not moving at all. I know very well what it’s like to have zero voluntary movement, and total awareness of surroundings, and I’m not afraid of it.

I also know what it’s like to not comprehend anything going on around me, to be unable to form what most people consider thought (although I think their definition is far, far too narrow to encompass all thought), to “lose” extended amounts of time because things were not encoding into memory, to understand things only on a perceptual level with no abstraction or what non-autistic people would call “comprehension” or “cogitation”, to understand things only in the moment and not have a continuous memory going on, to understand bits and pieces of things on bits and pieces of different levels, and so forth. I know what it’s like not to even be able to put together the intent to “understand” things in a relatively typical way, because the knowledge of that intent simply isn’t there, all that “makes sense” is sensation.

I even know what it’s like to have seizures every few seconds. And from the effects of various supposedly “anti”-psychotic drugs, I know what it’s like to hallucinate and lose touch with reality. I know what it’s like to vomit several times a day, or continuously for several hours in a day. I know pain so intense that I can’t move, and can’t think of anything other than pain.

These are things I know. I know them short-term, I know them long-term. I know them as states that I am able to partially exit for certain periods of time, and I know them as states that I am mandated by my body to stay in until they’re over, if ever. I know the extreme fluctuations in all of these areas that I go through daily, and the gradual moving from one area to another that takes place over time. These things are or have been significant parts of my life. My friend and I talked about all these things from my life, and all these things from her life. Between the two of us, we have internal-body experiences that cover a pretty wide range physically and cognitively. Neither of us are afraid of physical or cognitive disability, of pain, of confusion, of immobility, or of illness. We’re not particularly afraid of even the things considered the most devastating.

There are things we both fear, though. And they have nothing to do with the internal experience of any of these things.

I fear being put in an institution, of any kind, whether a large institution, a group home, a nursing home, or a psychiatric ward. I fear boredom because people might assume I’m not there and park me next to a blank wall for years. I fear people not bothering to prevent or treat things like infections and pressure sores. I fear people who claim to love me deciding to kill me to spare me the unendurable suffering they imagine I am experiencing. I fear bad staff. I fear being assumed dead or unconscious when I freeze (this has happened). I fear not being given a workable communication system when one is available. I fear being treated as a non-person.

The trouble a lot of people seem to have, is they can’t distance these legitimate fears, from fears of the state of being itself. They act like the above are a natural consequence of being configured in a certain way, and that the best way to avoid that is to prevent at all costs that configuration, instead of preventing at all costs those things from being able to happen to people.

My friend and I are not afraid to acquire various conditions that are currently pathologized. We’re aware we’re likely to acquire at least some of them within our lifetimes, even if only in old age. We’re afraid of discrimination, including deadly forms of discrimination. The solution here is not to fix our fear or “acknowledge our feelings”, but to fix the problems that cause legitimate fear.

The trouble I have in talking about these things, is that for people who do not adequately separate out how a person is from how they are being treated, this sort of thing often results in responses like “Oh how horrible, I or my child or someone else is in all this danger, this is a horrible horrible fear, how can we fix me or my child or whoever until they won’t be in all this danger?” Wrong answer. Work to fix the danger, or you will have solved nothing at all except temporarily your own emotional state.

The trouble is, people make decisions, including policy decisions, based on these nebulous fears of being disabled, rather than the real and concrete situation that disabled people are treated like crap. People actually believe that their feelings on this are neutral in nature, and of course, since they are feelings, impossible for anyone to validly question. But these feelings come from somewhere, and without looking at disability as a political thing rather than an issue of personal individual suffering and uselessness and whatnot divorced from any context, we will continue to have awful things happening to us all the time, and people will continue to fear becoming like us.

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.