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3:27pm February 20, 2012

I am good at adjusting to situations. Possibly too good at times. I don’t always know when a situation is worth adjusting to and when it’s worth fighting. Despite the intense will I sometimes have, despite sometimes accruing a reputation as someone who fights too much, there’s a kind of passivity to me as well. Almost a physical passivity, rather than a passivity of the will. And I have all kinds of mental tools that help me to passively adjust myself to a bad situation rather than do anything about it. In fact, when I was first diagnosed with autism, my shrink’s number one goal was teaching me how to actively change things rather than passively adjust to them. I don’t think he did very well.

And yet.

Despite passivity so extreme it’s been thought of as pathological, I seem to have something hard and unbending underneath it all. Something that, if anyone tries to push it, will push back with everything it’s got. And it’s remained there and gained strength despite circumstances (like breaking under torture) that you’d think would eliminate such a thing.

That hard part of me is something that a lot of passive people I’ve met haven’t got. Even people less passive than me overall. And the effect of not having it is that even a lesser level of passivity runs deeper. Because my passivity, for all its intensity, really does seem a very physical thing. A thing on the surface, and quite a distance below it, but not something that extends down into all of me. Some of it is the passivity that comes with “autistic catatonia”. Some of it is more of a purely mental and emotional passivity – a repertoire of strategies to allow myself to adjust to damn near anything. But there are large parts of my personality that it doesn’t touch.

And at that horrible rec program is where I discovered both the limits of my passivity, and how much of my well-being relies on having at minimum a couple people around me who know and understand me.

I’m told that just about everyone’s well-being depends on others. But – because of those passive elements – I never even thought of that. They took me out of my normal life and the people in it and isolated me from the real world. And all I did was keep trying to adjust. Sometimes what kept me going was the knowledge that at any time I could text my closest friend. I’m good at finding knowledge that keeps me going. That’s part of my strategies for handling things.

And then. They told me cell phones don’t work there. They said I have no access to a regular phone except when they say so. (Even when I was coughing up green stuff. Even though they knew that with bronchiectasis that’s very serious.) And combined with being sick and weakened, their pulling the rug out from under me finally hit the place where I couldn’t bend anymore. And I cried so hard I was screaming.

I tried to tell them how awful it was that I had no power to contact the outside world. I begged them over and over to contact my power of attorney for healthcare. They didn’t. They also treated me like there was something very wrong with me that I didn’t like being forcibly isolated from the outside world.

And I believed them.

I believed them because when you are isolated from the outside, your entire world becomes what you can see in front of you. You lose your bearings. You have no other frame of reference.

Most people have no idea how much their ability to see the world as it is depends on being surrounded by people and things that allow them to know this stuff. And even when the person has few to no other people around, that’s still not the same as being around people who feed you a steady stream of lies and isolate you from anyone who could tell you otherwise.

And that’s what happened. They told me that there was no reason at all that I should be upset about being isolated from the rest of the world. They told me that my being upset proved that I was an untrusting person who sees the worst in people. Because there was no reason – no reason at all whatsoever – to be upset about this unless they were abusive. And they were so clearly not abusive – because they had degrees in special education, worked in the school system, delivered babies, were allies to the self-advocacy movement, and a whole litany of other non sequiturs – that any mistrust on my part was clearly a personality flaw and not a reasonable response to an awful situation. They spent hours trying to convince me of this.

I’m just glad I realized I was sick enough to die, and got them to send me home. A doctor later told me that with my oxygen levels I would have belonged in the ICU if I hadn’t figured out how to use my bipap to support my breathing. And yet if I hadn’t heeded my body’s warning signals… I don’t even want to think that one through. As it is it took multiple courses of antibiotics to cure it. I was also told that the rec program’s refusal to let me rest probably weakened my immune system so badly that I came home with not one but three infections in different parts of my body.

And yet I really believed them that the trouble was with me. The last thing I told them before I left was that I would come back later and prove that the only reason I got so upset there was that I was sick and not myself.

No. The reason I got so upset was that the place was awful. And that the only thing keeping me sane was the knowledge I could contact someone on the outside if it got bad enough. And then they took that last thing away from me and I completely lost it.

But in their world, the problem was how I thought of them. And you know… I see a lot of situations where people try to confront someone with privilege on something harmful they’re doing, and the person turns it around and goes “how dare you accuse me” and makes it about that. And on tumblr or something, that’s an annoyance. Even when it’s a big annoyance. Even when the person is contributing to ideas that have horrible consequences. It’s still mostly an annoyance — it’s a few levels removed from the actual physical consequences.

This was more than an annoyance. This was people with immediate, real, direct, extreme power over people with developmental disabilities. Using that power in ways that ranged from severely emotionally damaging to potentially deadly. And refusing to admit that they had even a teensy bit of power over us. This wasn’t an annoyance, it was an emergency.

Take Nancy, for example. Nancy was an old woman with a developmental disability and severe communication problems. She had a precarious, wobbly gait. And she fell. A lot. Sometimes she managed to sit down and roll before she fell down (I know the trick). Other times she fell in ways that were completely out of control and obviously painful and dangerous.

Nobody ever inspected her for injuries after a fall. All they did was yell at her. They yelled that she needed to stop faking and get up because she had her own two feet and could walk on them just fine. They refused to help her up. They refused to give her physical support to walk. They refused to do damn near anything for her ever. They constantly yelled at her for doing things the rest of us were doing. Sitting down. Standing up. Everything she did was wrong. I don’t think anyone ever talked to her except to tell her what to do or tell her she was being bad in some way.

This was the first thing that made it past my passivity. I always find it easier to stand up for others than for myself. I told them that they were doing something very wrong. They told me that it was okay because her parents told them to do it like this. They told me I could talk to the director who had known her for ages, and she could tell me what was really going on so I wouldn’t be upset. They were abusing an old woman for falling and they thought the problem was I was upset.

And I’m pretty sure what will happen to Nancy. She will die. The problem will turn out to be something she’d had for a long time, something they could have treated, but that everyone dismissed as attention seeking behavior. It was obvious to me that she was in a great deal of pain that nobody was treating or paying attention to. It was there in her every movement. And even when she started retching in the middle of the night, their response to the woman who went for help was “Go back to sleep. She’s asleep. Nothing’s wrong. Mind your own business and don’t get out of bed again.” They didn’t even look at her.

Yes this was a place that told adults not to get out of bed. And they believed themselves not abusing power in any way. (They also told me it was bad that I needed to pee at night because it was waking staff up.)

And the thing is nothing had to be like this. Most of the staff were good people. But when you’re employing good people and telling them that a condition of their employment is to control another group of people, good people transform into abusive people almost overnight. It takes a strong will and a deep understanding of what institutions do to people, to resist it. But oh I forgot that the problem wasn’t that they were acting like an institution. The problem was that I pointed it out. In fact in general I was the problem.

And you know, the first thing I said that really set them off was how deeply upset I was by having no means of direct contact with the outside world. This hit some kind of nerve. They told me that because they were such good people, I had no reason to be upset. I tried – still passive – to explain my history in mental institutions. I tried to frame it in terms of past trauma. I tried to make it about me, not them, because I was too afraid of them to speak plainly. And this still was not good enough. And that they were so touchy that they couldn’t even accept that this isolation triggered terrifying memories, told me something was very deeply wrong and made me panic more and cry harder. Because I know that good places are not so defensive that they cannot even accept that something they did is inadvertently setting off bad memories. When someone can’t even accept that level of explanation, it’s seriously time to panic.

So somehow no matter what I did and how sensitively I tried to tiptoe around their feelings, they always twisted things around until it was my fault. (And they actually refused to let me talk to my case manager after, in a time crunch when looking for words, I dared to actually say that my words were being twisted to mean something I never said. I can’t be tactful at high speed, I can’t even communicate at high speed under pressure.) At one point they even pulled me into an argument about whether I “took” the phone or “grabbed” the phone. No matter what I said — and I was not at my best, communication-wise — they could find some detail to use against me. And they could not stand even the slightest hint that they had power, or abused power, or resembled an institution in even the tiniest fleeting way. And I was the problem, period.

When I got back, I was really horrified by one thing: That my ability to handle things was so heavily tied to being around the right people. I was still in a frame of mind that told me if I could not emotionally adapt to something then I was the problem. I wanted to be strong enough to take anything, anywhere. But my friends opened my eyes to the fact that we are all dependent on context around us being right, including the people. That this is not some special level of vulnerability on my part, that virtually everyone is vulnerable in the same way. It always amazes me when I find out that my problem isn’t me, it’s the way my whole species is set up. Because I always default to myself being the problem. I rarely think about myself as part of a species that has pretty close to species-wide weaknesses. I expect myself to be tougher. Not because I think I’m better than other people, but because I either forget to bring other people into the equation, or have no idea what’s normal.

But I know now: I can’t go off somewhere with no outside contact and expect to be okay. And I cannot pluck myself out of my normal circumstances and expect to function the same as I would normally. These things don’t happen. Maybe this will stop me overestimating myself all the time. Also, and most importantly, I have to stop getting myself into bad situations and thinking I’m the only person affected. That happened twice last summer and I realized how much it affects other people when bad things happen to me. I also realized I need to actually care that I’m in danger, which I generally don’t.

I’m now aware that when I really connect to myself on certain levels, I am not passive at all. The trouble is remaining connected to that. It’s hard work, and way too easy to slide into my usual habits if I’m not being careful. I thought it would be one breakthrough in that regard and I’d be fine. Instead it’s a continual struggle against decades of practice at being otherwise.