Daily Archives: October 22, 2006

Hey, watch it, that’s attached!

Standard

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.