6:30am April 14, 2013

Sometimes the things that don’t exist hurt us the worst.

First off, I’m a huge fan of not shunning autistic people simply for wanting a cure. And especially for not considering people who want a cure to be somehow lesser in their attempts at advocacy. I’ve worked alongside people who want a cure at all sorts of things and the only one I can’t work with them on is opposition to the idea of a cure. That leaves a zillion things left to work on that have nothing whatsoever to do with a cure. And I wish more people recognized that instead of treating cure or no cure as some kind of test you have to pass in order to be treated as a real person by other autistic people, or in order to be considered a real self-advocate.

But this post isn’t about that at all.

This is a post about why I, personally, think that the issue of a cure does in fact matter. And tnat just because one doesn’t exist doesn’t mean the issue is an imaginary hypothetical thing with no roots in the real world. In fact, for disability in general, as well as autism in particular, the idea of being cured has a powerful hold. Many people in the disability community talk about how the only two ways that many nondisabled people will accept us is if we are cured or dead. We can’t somehow live a good life and stay disabled, it’s not allowed, we have to either be cured, made as close no cured as possible, or be working our asses off all the time in pursuit of a cure. (Is this why some doctors don’t see my life as worth saving with a feeding tube? Because it won’t cure me and I can’t be cured?) So while I consider whether a person wants a cure a matter of personal choice, I also know that the pursuit of a cure in certain contexts can have terrible consequences.

And this is where things stop being theoretical or abstract and start becoming extremely specific, concrete, and personal.

I grew up autistic, but by the time I was a teenager I’d gained a bunch of abilities, and I’d also gained the false appearance of a bunch of abilities that I didn’t really have in the first place. When I was roughly twelve years old, many of those abilities began to fall apart. I didn’t know what to do. I did a lot of things that only make sense if you were inside my head at the time, and I’m not going to go into detail about them or explain them to you because they aren’t really the point here. Suffice to say I began losing both skills I had painstakingly gained, and false appearances of skills, both at once, many of which are so intertwined I will also make no attempt to describe which ones are which because many were a bit of both.

I began having more trouble speaking. I began having more trouble moving. I began overloading faster and shutting down harder. Areas that had always, underneath everything, been my greatest strengths, became amplified as well, but nobody was really looking at or understanding that at the time so this was being seen as a period of loss. I began having more trouble understanding things academically, although I was able to fake it for a while as those skills skidded to a halt. I had more trouble with basic self-care stuff.

This wasn’t a thing where something was there and suddenly it wasn’t there. It was back and forth. One moment I could do something the next I couldn’t the next I could. But the periods when I couldn’t do it happened more often and got longer and longer with time. This happened very slowly. Some of the skills I was losing were also ones that I’d never quite had in the first place. I had tried to be advanced in certain areas without having the underlying foundation required to do them. After a time, when the bottom falls out, all the stuff on top has nothing to stand on. So the bottom fell out and a lot of things fell apart, slowly or quickly.

I had no idea what was happening although I had some very scary thoughts about it. I didn’t even know I was autistic, or what autism meant. I certainly didn’t know that a large percentage of autistic people lose abilities in adolescence and that a smaller percentage of such people had a parkinsonlike progressive movement disorder currently known as autistic catatonia. At the time it started for me, there was maybe one or two case studies out in obscure locations in medical journals. I did see a neurologist but that was cut short and they didn’t know anything about this.

But even more important, nobody had prepared me for an adulthood where I couldn’t do certain things. My only glimpses of such adulthoods involved institutions. Nursing homes, mental institutions, developmental centers, they all blended together in my head, because I knew they were all basically the same thing. And I increasingly believed I was destined for such places forever. Because that was the only option I’d ever seen for adults who couldn’t do what I was increasingly finding myself unable to do. And as with most of the conditions I’ve had over a lifetime, I was the very first person to grasp the implications of losing these skills in a pattern where it didn’t seem they’d ever come back again.

I eventually tried to kill myself and voluntarily checked myself into a mental institution because I thought that’s what people who kill themselves do. My parents didn’t like me being there, they’d seen abuses, and they pulled me out. But I landed in another one, involuntarily, very shortly. I was soon diagnosed with autism, but nobody really explained to me that I was diagnosed or what it meant. I heard the word but because of many things too complicated to explain right now, I heard a lot of other words. I thought it was just one more kind of crazy, and I was certain that I was either crazy or deeply wrong in some way that had no name and couldn’t be explained. So I accepted and went along with whatever I could understand of whatever professionals or laypeople called me and this greatly confused matters. But that’s not the point.

The point is that somewhere during all this, the people around me developed two separate and distinct opinions about my future. One was that I was deteriorating in some horrible way, explained differently by each professional who saw me, and that this would continue indefinitely. I would live in some kind of an institution the rest of my life. The other was that through some treatment or natural process or something, I would be cured by my early twenties, and I would live out my life as slightly weird and eccentric but I would get a job and do everything that a supposedly independent adult is supposed to do.

In other words, I could be cured and live a normal life, or I could remain as I was, and be institutionalized and live a half-life that wasn’t real and wasn’t right and may even, they hinted, be worse than death. Sometimes more than hinted, but that’s another story for another day.

People who thought I could be cured – of whatever they thought I had, be it autism or schizophrenia or some unknown neurological or psychiatric illness with no name – believed they were giving me hope. They saw themselves as being in a constant fight against the people who thought I would remain disabled, even become more severely impaired as time went on. A fight for my life. A fight for hope. A fight for my future. I perceived things quite differently.

I had tried living for the people who referred to themselves as representing hope and a cure. The two being absolutely linked, there was no question in that. There was no hope where there was no cure. I would try their treatments, whatever they were. For a short time I would work my ass off to function the way they wanted me to function. For a short time I would partially succeed, through burning through all sorts of resources that had better uses. Then I would run out of such resources. The real me would show through. Unable to do things. Shutting down even further than normal because I’d used all my energy to appear as if I could do things I couldn’t. And then the treatment would have failed and I would feel incredibly guilty. But I threw myself into every role they gave me and then tried hard to be cured of whatever they thought I had, because I didn’t know what else to do.

Deep down, though, I knew that what they were offering me is not hope. Things that are absolutely impossible are not hope. I knew without a doubt in my mind that I couldn’t do what they wanted me to. Because they wanted progress at a rate that a nondisabled person would progress in their skills. I couldn’t do that. I could put all the effort in the world into keeping up, and at best I’d just fall behind a little slower. Over time this became obvious to me before it became obvious to anyone else.

And it became obvious to me that both groups of people, both the ones supposedly representing hope and the ones supposedly representing despair, were telling me the exact same damn thing. If you are not cured, your life is hopeless. If you remain who you are, your life is hopeless. If you are not cured, and remain who you are, terrible things will happen to you. That message was just as loud and clear in the people who claimed to represent hope, as in the people who didn’t. And it was just as destructive. Their hope for a cure was actually telling me that I couldn’t live in any possible way I wanted to live, unless I did something I had become aware was just as impossible as waving my hands and transporting myself to New York City.

This is where people have called me stupid, and where I’ve hated myself. People even in recent years, when I tell these stories, have told me I should have known better. Ought to have known better. Somehow should have been able to envision a scenario that had never, so far, been part of my life yet. I had never seen anyone like me living a life I could see as okay, and now some people would rather blame or mock me for that cognitive limitation than face up to the fact that some forms of “hope for a cure” have dire consequences for the people subjected to them. I’m far from the only person faced with this situation who could only imagine the two outcomes presented to me. The one outcome, really, because I couldn’t fool myself into believing I could be cured. And even the cure option told me my non-cured self would meet some dire fate.

So I became even more suicidal than I had ever been in my life. Suicide is something people often choose when we see no other way out of a horrible situation. I was being promised a whole lifetime of horrible situations with no escape, just for being who I was. I knew now that who I was, would never be cured. I still believed, not understanding autism or some of the other diagnoses I’d been given, that what I had was mysterious and terrible. Because it had no name, for all I knew I was the only person who had it. And that made it some dark, terrible secret, personal to me, that even I couldn’t fathom or understand. Worse than anything even the pessimistic people talked about. Worse than anything that existed. Something with no name that didn’t exist except somewhere in the depths of my body and brain. Something even the doctors couldn’t understand. This was even after I was diagnosed, for the word autism meant next to nothing to me until later, and the term autistic catatonia hadn’t even been invented yet, and all this talk of developmental disorders and pervasive developmental disorders was all just garbled words to me.

So I became suicidal. Very suicidal. I tried to kill myself in both ordinary ways and quite weird ways. I no longer made any effort to appear to get better, at least until I was beaten into it again. Literally.

And autistic adults had to teach me, as I was first reaching adulthood, who I was, what was really happening (they sent the newest papers on autistic catatonia to my shrink, who diagnosed me instantly, having seen it all those years), and the sort of life I could lead without being able to work or take care of myself very well. But it took years for the feelings to lift that had been caused by misguided attempts to cure me. Feelings that I wasn’t worth anything to the world as I really was, that my life was going to be worth shit. That I was uniquely and terribly defective in ways that had no name. None of that went away just because I’d discovered I was autistic, in addition to a wide range of other things going on with me. It did a lot of damage and left scars that still haven’t healed.

And that’s just the idea of a cure. You don’t need an actual cure for a cure to do harm to people. It’s not just a hypothetical thing. I spent my adolescence certain I was better off dead because of the way people talked about cure around me. And the way people talked about cure around me is the standard way people think and talk about cure around autistic people and many other kinds of disabled people. I had no idea that I could grow up and live a life that I determined, as much as anyone can determine their own life. I had no idea I could have my own apartment unless I was cured. I had no idea I could be a happy, severely disabled adult who never recovered from that mysterious progressive condition with no name. I had no idea I could be okay with the uncertainty of not always knowing what was going on with my body. None of these things were given to me as possibilities because the only good possibilities came out of cure.

So want a cure for yourself, don’t want one for yourself, be indifferent to a cure for yourself, I couldn’t care less which one you choose and it won’t affect how I think of you. But don’t tell me that the whole idea of cure doesn’t matter because a cure doesn’t exist. Lots of things that don’t exist have a huge effect on people. People are constantly living their entire lives by stories in their heads that have no direct bearing on reality at all. And the story of a cure being the only way to live a good life, is a powerful one, its a story worth fighting whether you want a cure for yourself or not. Because it’s a story that kills people from within and without both. It’s easy to say that things that don’t exist can’t hurt you, but it’s not true, sometimes the things that don’t exist hurt us the worst. And I’m still recovering from the damage of that damn imaginary hope for an imaginary cure.