8:35pm November 16, 2010

Survival

Sometimes I feel isolated when among a group of people who have the dubious luxury of believing that they are not one step away from death. I mean like, one policy change, one disgruntled “caregiver”, one decision by the state, etc. I live every day knowing that anything could happen. And most of them still trust in their middle- or upper-class security (which in the USA isn’t that secure, but they at least have the ability to have illusions). And in the fact that most of them can survive without unusual sorts of assistance.

I look at my life. I’m considered completely ‘bedridden’ (though I hate the term), and going out even in my tilting wheelchair is a big deal. Even if this weren’t true I’d still need all the same assistance for cognitive reasons. I don’t have money. I depend entirely on a kind of assistance that my society sees as extra, and could therefore take away at any moment.

The assistance is provided by people whose role society sees as saintlike, and who are allowed, should they so choose, to fill their own heads with the image of themselves as the hard-working, long-suffering caregiver who could burn out at any time. (That I could burn out on them is never considered.) Caregiver burnout is seen as just cause for abuse and murder in this society, and that murder is often seen as doing people like me a favor.

Meanwhile, we’re viewed as half-dead already, and not quite human. So who cares if we are put away in segregated places with high mortality rates? Aren’t those rates the inevitable conclusion of being half-dead? And hey, if assistance for us outside of these places is eliminated, how long until they eliminate what passes for assistance inside them? Again, it’s half-dead unpersons they’re talking about, not real live people who feel our own vitality the same as everyone else.

Meanwhile I’m surprisingly socially isolated. Surprisingly to some people because they figure if I’m well-known I must have lots of friends. No. I have a tiny number of friends and lots of acquaintances. Most of those acquaintances know little of these daily realities and figure if something happened to me someone else would deal with it. The more powerful these acquaintances are, the less they know or understand about living every day on the edge of a serious survival situations. (And many of them view “serious survival situations” as ones I’ll likely never have the privilege to even end up in, because they’re so far removed from my life in the upward direction.) And most of my friends are on the edge of survival situations themselves, and not close enough geographically that we could mutually help each other in worst-case scenarios.

There’s all these differences in ways of handling situations also. I’ve often been in positions in my life where it’s “change or die”. And I watch people with far more resources unwilling (they believe unable) to change some of the tiniest things about themselves. Even when the thing they need to change is hurting other people. And I mean not just hurt feelings (which they seem to put above survival concerns, and which seem to happen anytime those below them on the hierarchy express any emotion around them other than calm serenity). Such a small thing to change and then they’d be more ready to hear and act on our concerns. But no, they insist they’re incapable, that they’re just massively different from me when the reality is the reason I’m better at changing these things is because I’ve had little choice. And they want to talk about feelings, whereas I just live those feelings while talking about survival. Again it’s survival coming between us.

Meanwhile my country is headed for economic disaster. In situations like these, people like me are among the first ones to be shoved off a cliff while everyone above us still thinks they can save themselves if we only disappear. Services will eventually disappear. Even nursing homes will eventually disappear. It’s very obvious to those of us who receive these services but lots of other people still have their heads in the sand.

At any rate, this need to deal with immediate survival issues feels like some kind of major point of separation between people who have to deal with them and people who don’t. And separation is the last thing people need right now. But the differences in degree of privilege seem to be pulling people apart who would do so much better working together. And sometimes viewing people on the other side of this gap, from my position below them, it seems like it might as well be from the earth to the moon as far as I can bridge it. And yet more people would survive if it could be bridged.

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