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.

Posted in Developmental disability service system, HCBS, Problems and solutions

Developmental Disability Service Agencies: Can’t vs. Won’t

Photo on 5-12-18 at 5.23 PM
Mel holding up a prescription bottle of hydrocortisone, absolutely necessary to continued survival.

In my post on why Vasili Arkhipov should matter to everyone (and especially people in human services sometimes), I touched on what happens when my developmental disability service agency confuses what they can’t do with what they refuse to do.

I have a concrete example.

I take a particular medication four times a day.

This is a medication that is vital to my survival.  I don’t mean indirectly.  My body does not make even a little bit of a particular hormone that is necessary to survival.  Without getting a replacement, I will die.  There is no way around this.

There have been many complicated things preventing me from getting the right amount of this medication, throwing my health into jeopardy.  Some have to do with the agency and some don’t.

But my endocrinologist recently got angry about something the agency was doing.  One of the doses of the medication has to last me overnight.  It has a certain time it stays in effect.  You can’t change this time by wishing really hard or something.

So there was a staff shortage, and they started sending people earlier and earlier at night.  A medication that was intended to be taken at 9 pm started happening as early as 5:30 or 6 pm instead on days when it was more convenient to the agency.

I started waking up with trouble breathing, and having to take more of the medication to breathe through the night.

Needless to say he wrote an order saying the nighttime dose needs to be as late as possible.

But anyway, we recently discovered a lot of things that were going wrong with this medication.  Everything from the way my stomach was absorbing it, to the way my body seemed to be using it, to other conditions being affected by it, to the timing.  So we had to start over.  By start over I mean go through a long grueling period of figuring out how much I needed by chest port, resolving as many digestive issues as we could, working out dose conversions to my still-wonky guts, and coming up with a dose and timing schedule that will get me through the day without too many hiccups or surprises.

In order to do so, we had to throw out my agency’s schedule entirely.

See, before this, I was only getting the medication during the existing staff shifts when the people from the agency were at my house to administer medications.

And that didn’t turn out to fit the rhythms of the way this hormone works in anyone’s body, let alone mine.  Like not even a little.

But we had to go with what my body would actually need.

So now I have a medication I have to take four times a day, and every single one of those times is outside of the times when I have staff over to help me administer things.

Self-administering medication without, at least, prompting and checking from an actual human being, is not something I can do.  I know this.  I used to have an app designed specifically for people with brain injuries and other cognitive disabilities that wasn’t good enough to nag me into doing shit like this.

Mind you, I’ve downloaded Medisafe onto my phone.  But that’s a backup.  It’s not sufficient.  Medisafe alone, even with the thing where it texts someone if you don’t take it, isn’t enough.

And of course when my case managers come by, they’re all cheerful to tell me about how their boss told them about Medisafe.

But anyway, they were also just as eager to tell me that they as an agency were not capable of giving me the support to self-administer this one medication.

Support would, at minimum, consist of getting a phone call four times a day.

A fucking phone call.

That’s all.

Not someone to give it to me.

Not someone to physically be in the room.

Just someone to call, get me to initiate the whole process of doing it, and then verify that I’d done it.

They told me this is not possible.  That they can’t.

I told them that I understand they think they can’t, but that I need them to know I’m fully aware that they actually mean they refuse to.  Maybe not these case managers personally.  I don’t know who.  But failing to provide even minimal support for a life-saving medication is a refusal, not an impossibility.  And I refuse to let them get off the hook for saying it’s just impossible for them to support me on this.

They do more at other times than it would take to do this.

They just — someone, somewhere, in the agency — don’t want to provide this kind of support.

I will come up with other options, of course.  I already am.  I told them that if they refuse to support me on this then they need to help me find those other options at the very minimum.  But that it’s absolutely, absolutely refusal.  It’s not can’t, it’s won’t.

Agencies love to come up with random reasons they can’t do something when they really mean they refuse to, or don’t want to, or just plain won’t for whatever reason.

My agency seems to love to do it by reflex.  Often the very first thing I hear when I ask for help with something is that it’s impossible.  Even if it’s something like “Can someone plug my cell phone in at the end of the shift?”

At any rate, it’s really wonderful to hear how person-centered this agency’s services are these days.  You’d think there wouldn’t be anything more person-centered than figuring out a way for someone to get life-saving medication at the times their body needs it.  But person-centered appears to just mean I get the option of having a glorified social media profile stuck into my file, not that anything I get in the way of services actually revolves around what I need or want in life.  Because that’d make sense.

Make no mistake about it, though:  This is not something they can’t do, this is something that at some level they are refusing to do.  Because the agency is set up for the convenience of the agency, not for the convenience of those of us it claims to be there to help.  Which has results for us that range from annoying to life-threatening.

I agree with a friend’s assessment of the situation:  While I’m not in a congregate care setting (a place where lots of disabled people live together usually not by choice), in practice this is “sort of scattered-site congregate care”.  This is what agencies behave like in more traditional institutional settings, they just get to pretend it’s not happening like that if we all live in individual apartments of our own.

I don’t think Vasili Arkhipov would’ve said he couldn’t try and veto the captain’s order to nuke the Americans…


By the way, I do have every strategy currently possible in place for dealing with this situation.  I have stopgap measures.  I have people on my side.  I’m gonna need something more than this eventually.  But I don’t need suggestions or anything, so please don’t.