Posted in Death & Mortality Series, Developmental disability service system

When powerful people don’t care if you live or die…

umbridgewithteajpg
Dolores Umbridge might be the ultimate representation of Nice Lady Therapists at their utter worst…

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Not all of my thoughts on death and mortality are purely personal.  Although this is certainly born out by personal experience, this is much more in the ethical/political realm than my personal relationships with Death itself.  And is just as important to the whole picture of how I approach death and mortality, and one reason I’ve been so reluctant to post my actual experiences of Death being a benevolent and friendly force.

If you are disabled.  If you are cognitively disabled.  If you are developmentally disabled.  There are people who literally do not care one way or the other if you live or die.  And there are people who actually kind of wish you’d die — some more fervently than others.  And there are people in positions of power who will either fail to act in ways they would normally act, or actively push things a little more in the direction of your death (sometimes obviously, sometimes more passively with plausible deniability).  And to be unaware of this is to be unaware of serious danger.

These people can work in the medical profession.  Many do.

These people can work in agencies that are supposed to give you support.  Many do.

These people can work in any major position of power over you.  Many do.

And I’m not talking about serial killers, although they take full advantage of some of these situations in all kinds of ways.  I’m talking about people who mostly think of themselves as kind of normal.

But they can still kill you with apathy, indifference, and even varying degrees of malice.

My developmental disability agency just announced to me last night things that confirmed the warnings I had been receiving from friends that this kind of thing was at work right now.  They want me suddenly doing things I have never been able to do even at my physically healthiest (and they have ample documentation of my inability to do these things), things they have been doing for me for thirteen years without incident until my DPA filed a medical neglect complaint against them.

This is part of an attempt to railroad me into a service model (which requires moving out of my own home and would not get me any better care) that they prefer for me.

This is part of retaliation for filing the complaint, before which there was no talk of railroading me into this service model.

But they know.  Perfectly well.  That I was struggling to stay alive and stay out of the hospital with the amount of services I was getting.  (I have had recent unexpected cascade-effect complications from a surgery and have been going alkalotic at the drop of a hat.  Long story.  But it’s taken everything I have and every skill I have to stay out of the hospital and alive as long as I have, and I’ve been back in the hospital since Friday.)  And they knew that the reduction in services caused by a staff vacation/staff shortage contributed to my ending back up in the hospital.  They knew all this.

Then they sent me a letter saying I am no longer entitled to have anything done for me, that I must physically participate in everything.

They know, in detail, that this is not possible for me.  They know, in detail, that this would be dangerous for me on multiple levels even without a severe, acute health crisis.  They have documentation of every single reason in more detail than they probably care to know, that even moving my body through the motions is physically dangerous to me.

They know these things.

So the only conclusion I can reach when they insist that these things happen anyway, is that whether I live or die doesn’t matter to them.

The fun part is if I do die, I’m sick enough they’ll probably get away with it even if they’re very culpable in the events leading to it.

But my friends have been telling me I might not live out the year the way this agency has been treating me, when I probably would otherwise.

When I say I accept death, it does not mean I accept THIS.  This isn’t death that just happens.  This is some toxic combination of apathy and malice, and the worst part is I don’t know precisely where it’s coming from.  But people have warned me about it just before this happened.  And when I spoke to medical professionals about it, they told me this kind of thing is very real and something to always keep in mind.

So this is happening.  Now.  I am in the hospital.  And I got a letter that started out with a basic “Sorry you’re in the hospital” thing and then a “But we’re gonna try to make you do shit that’d probably kill you or land you back in the hospital to try” thing.  Which makes the “Sorry you’re in the hospital” part feel completely phony.

I was starting to feel a little better and look forward to going home sometime soon, maybe not as soon as I’d like, but soon.  But I can’t go home to being expected to physically do crap I couldn’t safely do on my best day.

And I can’t stress how much someone at some level is perfectly aware what this means that they are asking this of me just now.

And that they don’t care the risks to me (even if they think it’ll just push me into accepting their bullshit program) tells me they really don’t care deep down if I live or die.  Because people who care if you live or die don’t dangle you over a cliff (or even pretend to do so) to get you to do what they want, even if they think they have a good hold on you.  Ever.

And the fun thing is even if you see this, and even if those around you see this, and you see the patterns enough to know what’s happening, you can’t necessarily tell who precisely they are.  They may be someone you never meet directly.  But people who explicitly range from apathetic to malicious abour your continued existence are out there.  And unfortunately in our culture of familial and caregiver benevolence, nobody who hasn’t seen it for themselves wants to believe it, even though it’s something well beyond commonplace.

So you can’t always just point to an Umbridge.  Even if there’s an Umbridge, or a small army of Umbridges.  (Umbridge got into this post because someone referred to this, after reading the letters, as “Dolores Umbridge-level fuckery”.)

And for the record, accepting death as a whole does not mean I accept this kind of death for an instant.  If I die because I’m expected to do crap I’ve never been able to do and is now physically dangerous for me to even be walked through the motions of, that’s not just dying because I’d die anyway.  And there’s a huge difference.  And I hope I don’t have to explain that difference to anyone.  I’ve long said that dying because I’d die anyway is fine with me, but dying out of someone’s apathy or stupidity or malice will leave me the world’s most pissed-off ghost.  If I had any intention of being a ghost, which I don’t (not sure it’s possible but very sure that trying would be destructive).  But you get the idea.

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Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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