withasmoothroundstone:

I have two main responses to this – not so much responses as adding information and advice to an already excellent article.  So my apparently way more  than two cents: 

1.  Literal die-ins

A note about a much more drastic, much more literal, form of ‘die-in’:

If, for some reason, the cuts all happen, and you’re literally going to die and are completely out of options.

See if you can make sure you don’t die off in a corner somewhere where nobody will notice.

Die somewhere public.  Die strategically.  Make sure people who might be capable of doing something see what is happening.  Make sure everyone knows why you are dying.  Make sure you are dying in a place that maximizes any benefit caused by people seeing and knowing and being unable to ignore your death.

Obviously this is both a highly personal decision and not everyone will be able to pull this off for all kinds of reasons even if they want to.

And obviously this is the last resort of last resorts.  Don’t do this if you’ve got a chance of surviving any other way.  Don’t use it as a means of suicide when you’d otherwise live – it’ll confuse people who are already inclined to see our lives as leading to being suicidal.

And of course be careful as hell that your tactics are actually likely to do something constructive for you and/or for others.  Check your motivations and your reasoning.  I once knew someone who tried to do a hunger strike when denied services – I had to point out that if they’re denying her services they want her to get out of the way and die.  In such desperate situations it can be easy to confuse suicide with protest and to aim your protest in a direction that either won’t help or will make things worse.  Be careful you know exactly what you’re doing, what you hope to achieve, and what your real motivations are deep down.

And, if possible, organize with others, or consult those with experience in these areas.  You’re not going to be the only one killed by this stuff.  There’s power in numbers.  

And – again – try hard not to do this if you have even a sliver of another option.    Because I’m talking about actually dying on someone’s doorstep and that’s the last thing you may ever do, unless someone rescues you.

I’ve done a much lower-scale thing along these lines before:  I was in an environment where illegal, dangerous construction practices kept taking place and the people at the emergency room had told me I needed to stop going back into that environment if I wanted to keep breathing.  I’d reached similar conclusions myself.  The law said we had to be relocated but they were refusing to relocate us.  So another asthmatic person and I decided if we were going to be made de facto homeless, we might as well embarrass the crap out of the people doing it, both for our sake and for the sake of others (one woman had died with the construction dust being listed as the cause of death on her death certificate).  So we had to get out and couldn’t find anyplace that would take us in, partly due to disability partly to other things.  So we figured if we’re going to be living on the streets – why not the streets in front of City Hall, with signs?  While our names did get dragged through the mud, they also did relocate us in the end and started using proper venting techniques so they’d pass the air quality test that we helped to happen.

The basic idea is – if you’re so screwed that you’re … well and truly screwed, then use the circumstances of being screwed tactically, both to try and get less screwed, and on behalf of everyone else being screwed in the same way who might not be able or willing to speak out.  It’s just that dealing with this in the event of your actual death is the ultimate extreme example of doing this.  But the basic idea (even though it’s more complicated in practice for obvious reasons) remains:  if you have to die, die on the doorsteps of the people killing you and draw as much attention to your death and its causes as possible.

2.  If you can’t make yourself care about disabled people, at least care about jobs.  And if you’re disabled and/or a Medicaid-funded service provider of some kind consider forming alliances here.

Also, people in general?  If you can’t find it in your hearts to give a fuck about whether disabled people live or die, or live in institutions or outside of them (and since institutions that supposedly provide “more specialized care” almost always kill us faster than getting those same services on our own… those sometimes mean the exact same thing), or etc.?  Then give a fuck about the amount of jobs that will be lost among places that depend on Medicaid for most or all of their funding.  I don’t know about everyplace, but here, there’s an agency that gives four types of disability services, they’re almost entirely funded by Medicaid, and they’re the largest employer in town (or extremely close to the largest – it may vary year to year).  In this economy we don’t need huge amounts of people losing their jobs.

But also, connected to this?

This is an area where the interests of disabled Medicaid recipients and the interests of Medicaid-funded caregivers dovetail perfectly.  If you’re one of those things, consider forming alliances with the other when it comes to fighting this stuff.  The more of us realize this affects everyone, the more of us working to stop this, the more likely we’ll succeed.

I’ve found in general that there’s a surprising amount of solidarity to be potentially created between disabled people and our caregivers.  I say surprising because way too often we end up in a relationship with caregivers that’s fraught with danger at best and completely toxic at worst.  But part of the reason for that is that front-line staff don’t often notice that they have power over us, only that the entire rest of the agency has power over them.  So they take out all the mess they are dealing with on the only people with less power – us – often without even realizing what’s happening.  (Some even convince themselves that clients have more power than they do, which is virtually always BS.)

But I’ve found that if an agency is truly screwing over its front-line staff it’s probably screwing over its clients as well, and vice-versa.  And reaching out across those lines to recognize the common thread there can really be good in terms of finding (and being) allies.  Our power positions are far from identical, which is what leads to both intentional and unintentional power abuses, but they’re generally the two lowest power positions in the entire company.

But the Medicaid situation goes beyond even the lowest rungs of the agency.  It really goes to literally everyone there whose funding is primarily Medicaid-based.  Which can mean literally everyone.  And at that point it’s most important to recognize the entire company could go under and figure out how many people from there recognize this and are willing to help you fight for all of our sakes.  The rest of the power crap can be dealt with once we know whether there’s even going to be caregivers.

Oh a third thing:

3.  Don’t beat yourself up if you can’t do these things.

I can’t risk being arrested if I want to survive.  As in, I’m entirely dependent on more than daily doses of a steroid that I will die if I don’t get.  I have to either get it through a feeding tube or a chest port.  You often can’t even get the most necessary meds in jail or prison.  Let alone an unusual formulation of that med, inserted using medical equipment they might not have on hand.  I also can very rarely use speech to communicate.

So basically – I really would have to be in a situation where my death was imminent, before it would be worth me doing the kind of activism that can get you arrested.  Because I think even from a standpoint that’s all based on “usefulness” – I’m more useful alive than dead, and dying because I couldn’t get hydrocortisone on time in a jail situation is not going to contribute enough to the world to be worth my then total absence from the world.  

And there’s lots of people in my position and that’s totally fine.  We don’t all have to be able to do the same kinds of protests.  And we don’t have to feel guilty for living to fight another day rather than making a fairly pointless sacrifice.  (Not that getting arrested in this context is pointless.  But if chances are greater that it will kill you than that it won’t, you’d damn well better assess if it’s worth it to you or anyone else, or if you’d be better off sitting this one out and letting someone capable of survival in jail, go to jail.)

I mean – I’m incredibly grateful to the sacrifices made by disability activists who do this stuff.  But you don’t have to sacrifice your entire life for a cause.  There are other ways to contribute.  I’m being explicit about this because there was a time long ago when the basic message “If you’re not at this protest you’re a worthless piece of shit” collided with severe depression in really, really ugly ways.  (I couldn’t make a sandwich and they were saying “If you don’t find a way to go to this place that happens to be an hour from your home, and do this other specific stuff when you get there, then you’re just lazy.”  No.  There is never just one way to contribute to a cause like this one.  And sometimes you can’t contribute at all.  And especially in disability communities it’s important to recognize this.  There can be a fine – or nonexistent, if you’re not careful – line between encouraging people who are avoiding doing something because it’s mildly inconvenient despite the resources to do it, and guilt-tripping people who already think they’re worthless.  (I don’t see that going on here – I’ve just seen it happen in similar contexts before so I’m being very explicit.)

“I was pulled out of my wheelchair by police. It could be worse. Trumpcare could pass.”