5:50am March 17, 2012

The Beauty of Death, The Ugliness of Murder

Thinking about all this stuff about parents who want the right to kill us. (And yes, for anyone whose communication can go away fast in a medical crisis, its us.) And people think our objections are about fearing death.

And like… I’m actually pretty acquainted with death. I haven’t died but I’ve been close a bunch of times. The more times it happens, the less I fear it. I don’t know how to describe what it’s like from that perspective.

But it’s beautiful. If you’ve ever read George MacDonald’s At the Back of the North Wind, he does an amazing job of capturing it. And it draws you in like gravity. And all you want to do, with everything in you, is relax and go to meet it.

If you escape, it comes in stages. First, there is no resistance and no thought of resistance. Then the thought comes but you can’t resist. Then there are varying stages and levels of resistance until you’re in the clear again. More or less. For some time after, it pulls at you. It’s so beautiful and so restful and so hard to want to go away from it.

That’s why I spent this entire fall recuperating from my hospitalization. By then I knew the signs well enough that I could see that if I didn’t rest a good deal, my body would not have enough energy to resist anymore.

I didn’t tell that many people because things like this frighten people. They think you’re suicidal or dramatic or something to talk about death in those terms. But I talked to my doctor. I knew he’d been around long enough and was perceptive enough to get what I meant. And he said he’d heard all this before tons of times. And that with the blockage and the high white count they were aware it was that serious.

Another friend told me the gravitational effect is entropy in action. Your body is always resisting entropy to stay alive, by cannibalizing energy sources. But if you don’t have enough energy, your whole being is pulled towards stopping. I’ve noticed a lot of writing from times and places where death is more common, deals with these feelings that surround dying and near-dying.

Besides that, though, there are other reasons I’m not afraid. Honestly, while I have all the standard human aversion to looking at or smelling dead bodies and then some, I still consider the decomposition process beautiful. Not to be around. Hell no. But beautiful in that it represents one life going into the lives of all the plants and fungi and animals and microbes that benefit from it. It means you get to become a part of all kinds of organisms, that them become a part of others. And on, and on. The only way for life to happen is for death to happen, that’s the means we all use to cheat entropy for a little while.

All that said, though. Because this is where people start getting worried. Just because death can be a beautiful thing, doesn’t mean I’m champing at the bit to get there. It will happen sooner or later. Death may have its beauty, but life is beautiful too and I want it as long as possible.

Besides that, I think I have an ethical obligation to resist that gravitational pull, stick around, and be of benefit to others for as long as I can. Whether that’s contributing in standard ways, or in the nonstandard ways that few people can see and fewer understand. If I can stick around, I will.

Most people are shocked, even repulsed, by the circumstances I don’t mind sticking around for, though. That’s what brings out the ridiculous accusation that I fear death. I would rather put it – I don’t fear life. I don’t fear life with severe physical or cognitive impairments. I’ve had enough of a taste of both to know I can handle it. I don’t fear life with certain brain regions not working, or not working well. Because I believe that many elements of who we are, is embedded further back in the brain than most people give it credit for. Backing me up is both a surprising amount of science, as well as a highly unconventional view of what it means to be a person. Not a religious difference – no matter how many people try to pin pro-life fundie identity on us, it’s not like that at all. More a completely different way of viewing the world. Probably, like many such things, based in my form of autism.

I don’t mind that not everyone else has the same wishes I do. I do mind, however, when people with wishes different from mine want to shape legislation, hospital ethics committees, and other things like that, to make it very easy to kill (or “allow to die”) me long before I reach the point where brain region stuff is even in question.

Because I don’t fear death. I probably fear it less than most “right to ~~die~~ kill your disabled offspring” people ever will, because they’ve rarely spent enough time near it to know how welcoming it is. I do, however, fear being murdered. And they can never get it through their heads that that’s what disabled people fear in all this: legislation that will make it easier to kill us for less good reason and easier to get away with murder (and coercive “consent” to death) against our will.

It’s already ridiculously easy, I’m from a demographic disability-wise where people can, with plenty of planning beforehand, strangle us or shoot us or drown us and not even get charged with murder. Or police can kill us, especially if we’re also men of color, and not even get charged with a thing. These are not just opinions, I’ve done pretty extensive research. To be autistic (let alone everything else I am) is to not be considered quite the same thing as a human being who gets full protection under the law. I don’t need it to be easier for anyone. And these things do make it easier, no matter how careful people are. So however I’d want things in a perfect world, in this one such lobbying is extremely dangerous to disabled people, even disabled people well outside the range they claim to be targeting. (Ever notice how when we are against them, the fact that we can communicate makes us Not Like Their Child? But when we’re suicidal, they want to be our best friend… and make it easier for us to die, rather than helping us with pain or depression or our living situation. Yeah it sickens me too.)

I’ve always wanted to ask someone why they think that being afraid of being killed is the same thing as fear of death. Do they look both ways before crossing the street? Yeah, thought so.

Because death itself? When it’s my time, I’ll welcome it, and happily go feed all the creatures that will live because I die. I’m less afraid of that than most of these people are. But I don’t want to die too soon because someone – even family – thinks I’d never want to live in such an undignified fashion. And yes, you can try and stop that from happening with paperwork. But living wills were created to help people die, not to help us live. And an ethics committee can, and constantly does, override the expressed wishes of someone if they cost too much or are too disabled or whatever excuse they come up with to call such an action, ethics. I’ve done the research. Myself. And I’ve watched it happen in front of me. This happens. Constantly. With no fanfare. And no big media push to hold a bogus debate on. Fuck.

Death itself can be beautiful. All the crap I had to listen to today was just plain evil. And dangerous to anyone who wants to live. Including, almost definitely, the children who have been killed by their parents in the name of “ending their suffering”, and the children whose parents right this moment want the state to sanction this. Because, surprise, the overwhelming majority of severely disabled people want to live, and no line has yet been discovered where we suddenly all want to die.

Notes: