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10:05am June 3, 2014

patternsmaybe:

Any time people think that there is a ~real person~ inside autism who needs to be unlocked, it really scares me.

People who can’t talk are real. Already real. Not trapped in shells.

Yes, this scares me too.

There was a time when I could talk, but couldn’t communicate very well, and I was the only person (besides, possibly, the shrink who diagnosed me) who fully understood the severity of the situation, because my speech and writing were a good facsimile of communication (and some of the time, were communication).

And while I don’t know what it’s like to go your entire life without even fake communication.  I do know what it’s like to go a large stretch of your life without being able to tell people things as fundamental as likes or dislikes on a regular basis, without being able to communicate basic emotional information, and to only indirectly be able to communicate anything important to you at all.

And it’s horrible in many ways.  But it’s not the same as not existing.

One of the most horrifying interviews with Soma’s son that I ever heard, was someone asked him where he’d be without his mother, and he said “I’d be a vegetable.”  And it made me want to slap his mother around as much as she’d slapped him around.  Because I’m sure she, and others, put the idea into his head that this is how you describe people without a clear means of communication.

There was also a large part of my life where everyone was trying to solve me, like a puzzle.  When all I needed, and indeed all I wanted, was to meet someone sufficiently similar to me that communication could happen.  I already knew at the age of fourteen that this was what was necessary, but I was pretty much almost an adult before I started meeting people who had that kind of impact on my communication skills, and I was well into my late twenties before I met the person I’d been thinking of, and my ability to communicate truly blossomed in the way I always knew it could.

I hated being regarded as something that needed to be solved.

I hated being regarded as mysterious.

I hated being regarded as a symbol.  (I came across a piece of paper on the floor that a family member had written, and it talked about how when I woke up in the middle of the night screaming I was a symbol of the fragility within us all.)

I hated being regarded as ~extra special psychic and spiritual~.

I hated most of all, however, when people wanted the ‘old me’ back.  What that told me was that when I was younger, they had illusions about who I was and who I would become.  It had now become obvious that I had never been the person they imagined, and would never become the person they wished I would become.  But now they wanted to turn back the clock and have the imaginary me back again.  It was a slap in the face because I knew full well I had never been that person.  I’d known I wasn’t that person, long before it became obvious to them.  So any time anyone said “I want the old Amanda back,” what I heard, and what I still hear, was “Who you are will never be good enough, I want my fantasies back.”

And they went to great lengths to bring the 'old me’ back.  And sometimes they’d claim to see glimpses of the 'old me’, which only meant that things were going well enough that if they squinted at me just right they could imagine that none of this had ever happened and everything was going to be 'normal’ again.

Closely related to that one was the one where this one shrink kept trying to give them hope.  See, half the shrinks said I’d be institutionalized for the rest of my natural life.  They said I was low functioning, unsalvageable, words like that.  But one shrink told them, “When she gets to be in her early twenties she’ll be living independently in the mountains writing novels for a living.”  And that was hope, to them.  Hope was independence, hope was a normal life.  I knew that would never happen, and because of that, people treated me like i just needed to be taught how to ~have hope again~.  

The thing is, I did need hope.  But the hope I needed was that my autistic catatonia would continue to progress, and I would acquire a boatload of chronic health problems, and I would be able to get the help I needed to live on my own, with assistance from others.  Giving me a choice between cure and institutionalization was not hope, because cure was impossible, so it was really only giving me the choice of institutionalization.  And people wondered why I kept trying to kill myself.  Lots of disabled people kill themselves over the prospect of institutionalization, and lots of nondisabled people think this is a rational choice we have made because institutionalization is ~obviously the only option if you’re severely enough disabled~.  

In order to live, I needed to hear that I could live in my own apartment, continue to be severely disabled, and get assistance with anything I needed assistance with.  This is why I want to one day make a video about my life and show young people that this is a possibility.  

Some assholes once, hearing I wanted to make this video, said “Why does she keep talking like her life is anything special anyway?  She’s on welfare, she needs help with everything, and she lives in public housing.”  Tell any person living in an institution and they won’t have to wonder why my life as I live it is anything special.

At any rate… all of this really is tied back to that idea that we somehow need to be unlocked.  Because what I needed was people who understood me and could help me from the inside out.  They didn’t need to ~discover~ me or ~unlock~ me or ~find me in there~, although sometimes I certainly felt like I needed those things.  And most of the good things started coming into my life when I encountered the autistic community.  Really, a small number of people within the autistic community who were willing to put in the work to help me learn to communicate better, help me learn to control myself better, keep me out of institutions, get me services, get me a place to live, and work with my parents to make those things a reality since all decisions still went through my parents those days and I did need a fair bit of support from them as well.  But without the autistic community – and the small number of specific autistic people who took an interest in me – I’d probably be dead by now, either from homelessness or institutionalization, or the effects of both.

But there was a long stretch where I felt completely trapped inside myself, and still would’ve probably resented the 'discovering’/'unlocking’ thing.  I especially didn’t like when people brought in psychics to figure out what was going on inside me.  I cringe when I hear people doing that to autistic kids.