1:22pm May 15, 2013

Some background, okay?

I would absolutely love it if I were ever in a position where my main worry could be about when I get to die.

Unfortunately I’m in a position where my main worry is and has to be whether I get to live.

I don’t get to tell a doctor ever, ever where I draw the line between when I want to live and when I want to die. I don’t even get to tell a doctor that I have a line.

Because that’s a luxury. And I don’t have it. Because doctors already want me dead. As in already. Not theoretical. Not an existential question about a possible future. Right now. Already been there done that. And if I gave them an inch… well they’re already trying to take miles of my life from me. They would find a loophole and use it.

It must be nice to only have to worry about when you want to die. Don’t ever forget that’s a luxury not available to any sufficiently disabled person who wants to survive the medical system intact.

It’s kind of amusing, I guess, to lightly mock my views on consciousness and spirituality rather than think about my ethical views on any level. I don’t expect anyone to agree with me about microbial intelligence or my spiritual views. But those views aren’t the actual underpinnings of my views on public policy. So if you’re going to pretend like those are my main reasons for believing as I do, think again. Those are views I have, so I put them out there, but don’t ever mistake them for my main reasons for being against euthanasia legislation. I understand though that it’s much easier to blame my ~weird kooky backwards viewpoints~ than to look at the major drift of what I’m saying. Which is that disabled people are already dying, we don’t need to make it easier.

Don’t pretend that it’s just people who are ~brain dead~ who are dying, either. It’s people just like me. Because just two months ago a hospital tried to put a lot of effort into killing me.

It must also be really nice to be able to just see that I’m still here and believe that and figure doctors must believe that too. Unfortunately it’s not that simple. I’m not always able to communicate, especially when very sick. I already have the physical appearance some people associate with mental vacantness. I’ve already had people declare to my face that I don’t exist. In hospitals. While my life was in danger.

And even at my best. Even when they know and accept all my accomplishments and my intellect. They still don’t see me as all there. I will never be fully there to them. Because a severely disabled person is never fully there never a full person always sort of a partial unperson at best. And because I have real cognitive limitations they pick up on. And because I look like their stereotype of a so called r-word (which isn’t a real thing, it’s a view of an entire large group of people as unpersons), and so they also assume cognitive limitations that aren’t there. Even at my best. And they judge me accordingly.

It would be so nice to be able to snap my fingers and make it stop but oh I forgot I can’t. Nothing I do ever convinces them that I’m fully real the way they are fully real. To them there’s always something missing from my personhood.

And I’ve spent a lot of time in hospitals in various states of consciousness and unconsciousness, and in between. It’s totally natural for me to wonder about the nature of consciousness, especially around people who judge me to not be there. It’s totally natural for me to look into the actual neuroscience behind thinking. These aren’t abstract existential questions for me, they’re things that have a serious bearing on everything up to and including whether I survive. If you think it’s obvious that I am in here, please convince the doctors next time I am hospitalized and unable to communicate adequately. It would save my advocates a lot of effort. Last time I was in there, despite them knowing I was aware, I was still considered only really a partial person, not a real person, and the fight for my life got so stressful that my DPA went home one day and threw up all her food. It would be wonderful if you jumped in and sorted it all out for us and saved us the time and stress of fighting to keep me alive when nobody wants me alive or considers me fully real.

But I guess I’m not supposed to speculate about things, to wonder, to put forth partially formed opinions, to suggest things that are fairly nonstandard beliefs, to ask what consciousness is and how we measure it, to discuss what happens with real and presumed cognitively disabled people. (And I’m both. Real and presumed.) Because those ideas, formed from my blood and bones and direct experiences of the worst of ableism, might get in the way of people wanting to die.

Unfortunately I consider disabled people’s wanting to live more important than anyone’s desire to die. Yeah it shouldn’t be an either or thing. But in this world it is. And I have to choose life or I’d be dead by now. The existing policies that make it possible for people to die when they want (which aren’t good enough apparently because people want to be guaranteed the perfect death), are policies that they already twist to kill people who don’t have any desire to die. And so it really does come down to, greater ability to die harms the ability of other people to live. And that’s where I draw the line. And why I draw the line. But that’s harder to argue against than making snarky comments about my views on how our cells interact and communicate and like to be alive.

My personal spiritual beliefs and beliefs about cells and stuff? That’s personal. That’s about me. I don’t expect anyone else to believe me. And it’s not the main reason I’m against euthanasia legislation. To me it’s far more horrible that disabled people who want to live are dying every day, many who don’t even know that what they’re being pressured into is death. That’s far more horrible than having to die later or in more pain than you want.

And having just been through an awful fight for my life against people who did believe my quality of life is too low and all that other shit. I can’t get too into people’s pain about a possible future in which they live longer than they want to. I’ll be damned lucky if I live longer than I want to, especially with the increasing pressure to die the more disabled I become. To be able to worry about living too long is a luxury, not something that should be writ into law any further than it is. Because such laws are carried out on the backs of disabled people who die because of them.

Already happening. Already known. Don’t need it worse. Sorry. This isn’t the ideal world you want it to be. I have to live in it. I’ll talk about any aspect of this as much as I damn well want to and I don’t care if it makes it harder for you to die. Because the goal is making it easier for a lot of the rest of us to live. And that’s just plain more important.

I only wish I inhabited the world you seem to inhabit.

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