clatterbane:

clatterbane:

withasmoothroundstone:

This is an area where I see even disabled people getting confused.  Like, even when we know deep down somewhere in our gut that it’s vastly wrong and dangerous, we don’t always have answers when people say these things to us, and that can cause us to doubt whether we actually have a good reason for our viewpoints or not.

I can’t count – can’t even begin to count – the number of times I’ve heard “there’s too few resources to go around” used to justify ableism.  Used to justify tons of other things, too, but at least people fighting those other things tend to have come up with answers to it.  Disabled people haven’t, always, even when we know instinctively that something isn’t right with what we’re being told to believe.

So it runs something like this:

“You say it’s wrong to deny someone a lung transplant because they’re autistic.  But there aren’t enough lungs to go around.  Surely we have to choose somehow!”

“Isn’t it a waste of resources to keep Americans alive on respirators and with feeding tubes when some people in some countries can’t even afford the basics?”

Well.  No.  And I can finally articulate why.

Take the organ transplant thing.

Yes, there is a horrible, horrible shortage of organs, for all kinds of reasons, some of which are solvable and some which may never be, depending on a lot of complicated stuff.  But regardless of why there’s too few organs to meet the need, there really are too few, they’re a limited resource and not everyone who needs an organ is going to be able to get it even if we believe every last one of them should get a chance at transplant.

(This isn’t theoretical to me.  I have bronchiectasis.  It’s mild enough I’ll likely never need a transplant, but bronchiectasis that gets severe enough can result in people being on the transplant list.  If that happens to me, I hold very little hope for getting a transplant.)

So.

The question these people aren’t asking.

Basically… certain kinds of disabled people are denied organ transplants for purely ableist reasons that have to do with the idea that our lives fundamentally have less value or less quality of life – automatically – than other kinds of disabled people.  (I can’t really call anyone sick enough to need a transplant nondisabled.).

But even after you remove all the disabled people where the issue is 100% ableism preventing transplant from being seen as okay or viable.  And even if you grant that there may sometimes be medical issues that render a transplant a bad idea compared to someone else (although that’s a slippery slope and there has to be a huge amount of caution even in seemingly clear-cut situations, because often what seems clear-cut can have deadly levels of hidden bias riddled all through it).  You eliminate all those people?  There’s still not enough organs to go around.

And yet, once you’ve got the people who actually make the transplant list, there at some point has to be stuff that’s just left entirely to chance and other factors, rather than the doctors picking and choosing who is more deserving, more viable, etc.

So like, why is it automatically assumed to be okay to use certain kinds of disability to narrow down your transplant list, when other kinds of disability can’t be used, and other factors can’t be used?  (At least not officially.)

And the only real answer to that question that makes any sense is, “Because this isn’t about what’s better for people medically, it’s about some people being automatically considered more worthy of life than others, some people’s lives being automatically considered more worthy of throwing loads of resources into than others, and it’s completely unethical to use such assumptions to make choices about who lives and dies in a situation like this.”

Like, let’s say there’s 100 people who need a particular organ, 20 of them have disabilities that are automatically or frequently used to exclude people from transplant lists, and you’ve got 10 organs to go between all of them even in the best-case scenario… you’ve still got 80 people left over.  So how is choosing between 80 people in a semi-random way different than choosing between 100 people in a semi-random way? If you really valued the lives of those 20 other people, if you really saw them as deserving a chance, you wouldn’t throw them out on their ass and tell them to go die.  You’d treat them just like the other 80 people.  You’d handle the problems of scarcity in a way that was fair to everyone involved, the way you try to be with the people who do make the transplant list.  

And seriously?  Please don’t try to “educate” me about transplants.  If it’s not organs, it’s something else people need to survive, and it’s always roughly the same groups of people singled out for not even getting the chance to survive, regardless of what the resource is.  And disabled people are always included within the first group of people targeted in times of scarcity.  Always.  (Yeah, there’s lots of others, but I can’t write about it all at once, my brain won’t do words that way.  So anything I say here applies to anyone this kind of deadly high-level BS is applied to.)

Like… pretty much any time I’ve brought up ableism, I get told “There’s not enough _______ to go around,” even in contexts where it makes no sense at all unless your reasoning is very, very ableist.  Like disabled people have brought up questions about disability-selective abortion, only to be told that “There’s too many people in the world already” (something also used to justify things like food not being a human right on the basis of race and class).  Reflexively, before people even bother to listen to why we have concerns about this.  (We’re also assumed to be pro-life or questioning the universal right to abortion  in such contexts, whereas feminists bringing up questions about sex-selective abortion are not generally treated like that.)  Or why we should live outside institutions.  Or why people in the UK who need respirators aren’t stealing resources from poor people in developing countries.  This zero-sum bullshit only works at all if you accept that disability is a valid reason for people’s lives to not be worth as much.  

So next time someone tells you that your membership in a group means you automatically don’t get some kind of resource that is (really or in their mind) scarce, ask why you automatically get counted out, while other people don’t even if there’s still not enough to go around?  And be sure to check and see whether the thing is actually scarce or just built up in people’s minds as scarce to justify denying it to people.  If we’re equal to you in value, then you can’t use our disability as a reason to choose these things any more than you can use some totally “innocuous” difference that would never be used and be considered the same as total randomness.  People can’t just assume that disability is a quality that justifies instant disqualification from those with even a chance at survival.  And even people who think they’ve thought it through all the way…. often haven’t.

So…yeah.  I’m really sick of this entire thing, and I’m sick of it being a way to shut us up because we don’t have an answer that we can articulate clearly.  (Don’t get me started on having to be able to articulate something clearly in order to believe it, either.  Especially because I have no chance of articulating that beyond these two inadequate sentences.)

I’m busy right now, but want to come back to this later. Some very important points

Reminded of this by more related commentary from Mel going around again, specifically talking about some of the dangerous politics around healthcare access and scarcity.

I couldn’t get back around to comment more on this post before now, mostly because it is such a huge overwhelming (and emotionally wrought) topic. I have a lot more to say about it than I can manage even semi-coherently here and now.

Same with one story from a month ago, which immediately came to mind when Mel posted this: Staffing crisis leaves NHS on brink of another Mid Staffs disaster, nurses warn

Which sounds like a threat–and NOT primarily to the current government, however they might try to slant it .

Royal College of Nursing chief executive Janet Davies said the Government has failed to respond to clear and alarming signals that the tragedy she called “inevitable” is about to happen again.

OK, I had pretty much been waiting for this to get brought up explicitly, especially since some of the totally forseeable consequences of the combo of galloping austerity and the Brexit debacle started getting harder to sweep under the rug.

As I commented early this year, on the total shocker Thousands of doctors trained in Europe ‘may quit UK after Brexit’:

This is hardly unforseen, but even more worrying given the state the system is already in after years of austerity: British Red Cross CEO defends NHS ‘humanitarian crisis’ remarks (“Mike Adamson says phrase was justified by scale of ‘threat’ posed to nation’s health and wellbeing by pressures on system”)

Not to mention the history of blaming criminal-level mistreatment of patients considered “undeserving” (and the ensuing coverups) on understaffing. Disturbingly successfully, I must add:
Systemic medical discrimation and abuse, pt. 1: Public scandals

No way running a sizeable chunk of the existing staff away could go wrong, not at all 🤔 Beyond the very obvious surface level the BMA is willing to address, which is already serious enough.

(Quoting to avoid repeating the same points now. Some of the other commentary on that post is well worth clicking through to read, as well.)

That public scandals post (from 2013) is where Mid-Staffs comes in. Some truly chilling stuff through the link, BTW.

What keeps getting the blame for the deaths and abuses here? Serious understaffing. No doubt that does create problems, but just the fact of overworked staff does not adequately explain why certain groups of people keep getting neglected, abused, and allowed to die…

Just being overworked is not an adequate explanation, much less excuse, for placing such a low priority on providing very basic, often lifesaving care, to certain groups of people. Also placing low priority on staffing for, say, geriatric wards where they know they are going to need to provide more care than they would with younger, more able-bodied people (like, erm, making sure people can eat and drink) is part and parcel of the same problem. Deciding that certain kinds of people don’t deserve what limited resources are available is a very different matter. I am afraid that this is considered normal and inevitable enough not to even warrant much comment, which is disturbing in its own way.

Understaffing does not, in itself, create depraved indifference, and “callous disregard for human life” is exactly the underlying problem here. Deciding that certain people do not deserve basic respect and dignity is the problem.

Understaffing also doesn’t explain why other staff (and patients/family members) who did try to speak out about some of the outright abuse and neglect leading to a bunch of deaths and untold misery “were deterred from doing so through fear and bullying.”

But, it’s easier to blame some terrible institutional problems on scarcity than to do anything substantive about those problems.

What really continues to disturb me is how few nondisabled people were/are willing to even admit that maybe something is seriously fucked up when the same groups of people “inevitably” get the short end of the stick there. And of course what resources are available need to go to people who are worth more.

And of course that doesn’t just apply to that spectacular a level of discrimination and abuse. It’s a serious problem all the way down, and only exacerbated by the Tories trying to dismantle public services. (Or, of course, the ongoing political mess in the US. Which I don’t even have the energy to say much more about.)

Depraved indifference.

So yeah, that sounded a lot like a threat. Using “The Vulnerable” as rhetorical pawns and hostages yet again.

Speaking as a disabled immigrant who has already run into significant problems with getting treated as an annoyance rather than an actual person, and receiving some seriously substandard care over the years. To the point of having to just do without for now, with no obvious ways of getting some necessary practical support. “Just” on a mundane daily level, and no doubt a lot of others further down some bullshit hierarchies of Deservingness are in worse positions.

The situation on the ground is already bad enough for too many people and deteriorating, with all the ongoing scapegoating and scarcity talk. (All the way down, yeah. I don’t even want to know what that guy also has to say about the spectre of “NHS tourism” and foreigners in general, but he’s hardly alone in any of it.)

We really don’t need more threats. While very few people want to see that for a threat at all. Largely thanks to some of the stuff Mel talks about here, alongside just not wanting to look at some systemic problems.

It’s overwhelming, and so is thinking about how many situations in so many places where similar applies.

That ASAN’S Anti-Filicide Toolkit post I reblogged does a pretty good job of articulating one of the main points I’ve been trying to get at in this slightly different context. A lot of the same factors are too relevant here, but especially:

• Isn’t this caused by lack of services?

It’s absolutely true that people with disabilities and our families don’t get enough services. But that’s not what causes these murders.

There are thousands of families across the country with insufficient or nonexistent services who refrain from murdering their disabled family members. In addition, most high-profile cases have occurred in upper-middle-class communities and have been committed by parents who either refused services, or had more family services than is typical. This is not about services. Suggesting that murders could be prevented with more funding holds people with disabilities hostage: give us what we want, or the kid gets it!

When disgruntled employees take guns into their workplaces and murder their colleagues, we don’t use that as a launching point for a conversation about how Americans need better employee benefits or more paid leave. When students shoot people in their schools, we don’t use this as a launching point for a conversation about anti-bullying policies. This doesn’t mean that we don’t care about worker’s rights or student safety; it means that these are separate conversations, and combining them makes excuses for murderers. We feel that drawing a line between filicide and lack of services is equally inappropriate

That kind of excuse flies too well where disabled/elderly people are involved, pretty much across the board. It’s very disturbing to see how well it works applied to outright abuse and letting people die across whole systems, to justify horribleness on an institutional level.

Abusing and killing people (and then trying to cover it up) takes more effort than…not doing that. And “It would be a shame if something happened to Granny, now wouldn’t it?” is just about the worst appeal for funding possible.

But, almost nobody seems to see a problem with any of this. That’s the truly disturbing part.