1:57am December 15, 2013

What is it like to grow up with a certain kind of freedom?

The freedom of not believing that things are required of you just because other people do them?

I can’t even describe how imprisoning that was. And it wasn’t because I was ‘a follower’ and it wasn’t because I was 'weak’ and it wasn’t because I was 'stupid’ and it wasn’t because I wanted to be that way, and it definitely, absolutely was not because I chose to be that way.

It was because I literally had no blueprint for how to behave in the world and the only thing I could figure out that consistently worked, at all, was to model certain aspects of my life on other people.

(And yet in other areas, I completely didn’t do that and disregarded what I was told to do. I can’t explain what the difference was. People are complicated. I’m no exception.)

But I get incredibly jealous of people who always did what they wanted, and knew how to do what they wanted, and knew what they wanted, and knew things I didn’t know.

And incredibly angry at people who assume everyone knows how to be like that and everyone is just fucking born with the knowledge of how to do certain things.

If you can’t understand what that was like for me, you can’t understand my life, at all. You just can’t.

It was like constantly being trapped and confused, and being judged for what I did while trapped and confused, to this day, really fucking sucks.

And there’s something really fucked up about how if you model yourself on normal people you’re doing something wonderful, but if you model yourself on other disabled people you’re doing something terrible. I did both. One got me praised, the other got me condemned as if I was doing the worst possible thing a human being can do. I still don’t understand how the two things are so different from each other. For me, they were the same: I was doing what I saw other people around me doing because I didn’t fucking know what else to do.

And I did that because I am disabled. If I didn’t have a variety of cognitive disabilities, nothing of the sort would’ve happened. Because all of this happened specifically as a response to not understanding my environment – not understanding my physical environment, not understanding my social environment, not understanding my intellectual environment, not understanding my fucking environment.

You grow up not being able to understand the words other people say well enough to get by on your own, so you learn to mimic the responses other people have, so that other people will think you understand, so that you don’t get shit on so badly for not understanding. It’s not that you cognitively even go “I don’t understand this, so I’m going to pretend to understand.” It’s more like “Ouch ouch ouch ouch OUCH how do I stop the ouch? Oh if I do this, the ouch stops. Less ouch. Good.” (And only, sometimes, being able to even figure out that if you do something, the ouch stops. Most of the time you’re not even aware you can do anything about it, or what to do.)

And you live your entire life like a leaf in the wind getting blown from side to side because all you can do is try to avoid the ouch.

And then you gradually grow up and begin to understand where all these things come from. And then you begin to be able to do things because you want to do them, not just because they hurt less than doing other things. And this is a huge accomplishment, and nobody even fucking notices because most other people learned to do that before they even hit preschool. You’re just starting to learn it by the age of nineteen, and it’s a huge huge huge accomplishment and there’s nobody to congratulate you because they assume you’ve been doing it all along. Because everyone knows how to do that. They don’t even question the possibility of someone not knowing how to do that.

And then after you learn to do it you get punished for things you did before you knew how to do that. You get punished for things you did as you were learning to do that. And your instinct is to fall back into the old habits and just avoid the ouch again, but you can’t do that anymore, because you have a set of ethics that won’t let you sit there and take it when you know it’s happening to other people. So you don’t let them silence you, and they try harder and harder to do so and to make you look like you’re doing something terribly wrong.

People who’ve been through it, though, usually know what it means to do things you have to do in order to survive. And they contact you, in smaller or larger numbers, to say “We’ve been there too, and we’re afraid, because we see what people are doing to you, and now we don’t want to speak out about our own experiences.” So this makes you committed to speaking out more, which gets you shit on more.

What the hell is it like to not have to blindly race around trying to avoid pain? What is it like to grow up being able to do things because you want to do them, or even because you feel obligated to do them, but still having a choice in the matter, rather than being bounced around by forces that seem to be beyond your control? What is it like to have so much of that freedom that you don’t even understand what that freedom means to someone who doesn’t have it?

I used to do things because I thought I had to, and then get horribly horribly jealous of someone who just decided not to do the same thing I’d just done. I can’t even describe the jealousy. It was toxic. It probably still is toxic. But I felt it so sharply whenever I did something only to be shown after the fact that it was possible not to do it.

It’s possible not to do things.

It’s possible to have a choice, even if that choice is to go along with someone else, even if that choice is to be a follower. It’s still a choice. It’s still different than what I had.

I did make choices, but they weren't consistent choices. I didn’t have the ability to consistently decide whether to do things or not. Most of the time I just got carried around by the wind.

And sometimes, I feel worlds and worlds and worlds apart from everyone who never had to live that way.

And sometimes, i wish I could live the first nineteen years of my life over again now that I know how to make choices. I think about it sometimes. I remember reading Harry Potter and realizing I didn’t have to take school as seriously as I did. I didn’t have to do so many things I did. But I thought I had to. Everything I ever did, pretty much, was because I thought somehow that I had to, that it was mandatory, that there was no choice of failing to do it, no choice at all. And if I did absolutely and positively fail at one thing, I had to do some other thing, even if it was things that felt horrible to do. But they didn’t feel much less horrible than other things I’d done, the ones that had gotten me praised.

How do you explain this to people who’ve never lived it?

How do you explain not having a choice, to people who’ve always had a choice?

How do you explain not knowing what choice is, to people who understand choice absolutely?

How do you explain vast, vast holes in your cognitive abilities, to people who have no such holes, to people who assume that possessing certain cognitive abilities means always possessing certain other ones, end of story?

How do you explain any of this to anyone?

How do you expect to be understood?

Can you expect to be understood?

[“I’m accused of being deliberately obtuse because people who understand the things I don’t understand can’t understand how anyone can possibly not understand them. (That sentence makes perfect sense. If you have to work a little bit to process it, you may get a slight taste of what it’s like to have a language processing problem.) My greatest difficulties are minimized, and my greatest strengths are invalidated.” -Jim Sinclair]

Can you want to be understood?

Can you want people to care and believe you, when you describe something so far outside their experience (this isn’t disabled vs. nondisabled either, this is particular-kind-of-disabled vs. not-that)?

Can you expect anyone to even give a shit?

Why does this hurt so much to even write? I know I’ve written about these things before. I just… don’t expect anyone to care, don’t expect anyone to believe me, and feel weak and dumb for caring whether people care or believe me, and especially for writing about my doubts and fears in that regard.

I can definitely feel my ego thrashing around in unproductive ways here, but at least posting this seems better than not posting it? Pardon the ego-thrashing, try to see through to the message underneath? I swear it’s there. And it matters. And if you understand this, maybe someone who isn’t me, who’s going through the same stuff, will benefit from your understanding? Because seriously, being trapped in this manner and not knowing how to get out is horrible, and being judged for what you do when trapped in this manner is even more horrible.