Join the disability justice to move from capitalism to something fabulous.
Cover: Kid in a bucket waiting for the council garbos. The kid can’t or won’t behave himself in a manner understandable and recognisable to the respectable, sheltered middle-class, therefore expendable. He has a history of having PTSD triggers set off by people taking advantage of him, who then read overloading on pain as an attitude problem to save themselves the trouble of being emotionally responsible, therefore expendable. He doesn’t react to us the way we expect, like or understand, therefore expendable. He’s smarter than us too, that faggot very definitely needs to be taken down a bunch of notches. Some needs matter more than others, especially when they’re attached to movement narcissists and politicians using social movements as springboards for their own personal ambitions. Stepping stones are expendable, when they’re incapacitated freakshows and ideologically nonconformist faggots especially.
Dr. Laura Basu || My last couple of posts have been instalments in a longer argument about how capitalism structurally runs on ableism. This week, I want to continue that thread by exploring how the disability justice movement can lead us out of our fundamentally ableist socioeconomic system, into something lovely and gorgeous.
So this post is actually instalment three of a longer piece, though it stands alone if you haven’t read the previous instalments. If you’re curious, you can read those previous two instalments here and here.
This post is going to be about the way that care is rationed in our societies. It will argue that, no matter what our rulers continuously tell us about having to make ‘tough choices’ about who gets to live and die, we can, and indeed we have an ethical obligation to, refuse care rationing point blank.
In fact, refusing to accept care rationing — as the disability justice movement does — is the first step to moving on from capitalism into a world of love.
Go QALY yourself: on assigning monetary value to life
A few years ago, back during the heights of the Covid pandemic, I got into a heated discussion with an acquaintance about the QALY system. This is a framework used to asses how ‘cost effective’ any given healthcare treatment is for a given patient, based on factors like our age and underlying health conditions. Many national healthcare systems, including Britain’s NHS, use this standard to base decisions about who gets what health treatments and kinds of care — and who is denied them.
Yes, our lives are literally assigned monetary value and some lives literally are deemed less worthwhile than others.
My interlocutor, let’s call him ‘John’, was very informed about the QALY system and also had a strong ethical position. He argued that the method by which life and-death decisions are made by our healthcare providers every day should be brought out into the open and that there should be a public debate about how to allocate care in the most ethical way.
My instinctive stance was that we should not be assigning numeric values to human lives at all. And we should certainly not be judging that some lives are worth less than others and therefore less entitled to care — and therefore to life — based on age, disability, or, for that matter, any other criteria.
What to me was intuitively a fundamental ethical point, a red line about which I was not willing to compromise, was given short shrift by John. We might want there to be no rationing of care but that is not the reality in which we live. The reality is that care is a scarce resource; we are going to have to ration care so the best use of our energy is to develop a fairer way of doing it. That was his gist.
That conversation still niggles at me all these years later. I can’t say it was the first time that someone, progressives included, has told me that my ideas about basic respect for life and decency were ‘unrealistic’.
Start from the assumption that care rationing is unacceptable — and take it from there
It was only a few months later that I discovered the disability justice movement. I was holed up, nesting, pregnant and in a nine-month flare up of my ulcerative colitis. I was still isolating from the pandemic while others were letting loose. I got my hands on Leah Piepzna-Samarasinha’s books Care Work, and a bit later The Future is Disabled.
There were many things about reading those books at that time that were special. The same high sensitivity that makes me think ‘unrealistic’ things was what made those books resonate with me in a way that felt like wiggly vibrations were rising out of me, connecting me to humanity, to the universe, and to freedom. (Ok the pregnancy hormones might have had something to do with it.)
One of the special things was the way Piepzna-Samarasinha talked about the horrors of the care rationing that their community was experiencing in north America during the pandemic, and their struggles against it. They wrote:
like every disabled person I know, I spent the year terrified that everyone I loved — because my whole beloved community is disabled — were going to be murdered by a virus plus care rationing.
They also wrote about the NoBody Is Disposible Coalition in California, which fiercely campaigned against those being deemed low on the ‘quality of life’ triage list (disabled, fat and old people) being denied care — and led to many care rationing policies being withdrawn.
Piepzna-Samarasinha didn’t get into a discussion about how value should be assigned to lives and whether it’s possible to have a world that doesn’t ration care. Their community was (and it still is) facing a violent attack from the state that was and (still is) acting out the banal brutality of those cold calculations, and were too busy fighting for their lives and the lives of their loved ones.
Piepzna-Samarasinha didn’t have to get into that discussion. The underlying assumptions were starkly different. Underlying John’s argument, the assumption was: ‘there is always going to be some form of care rationing — therefore the best thing we can do is decide how to do it more fairly’. Piepzna-Samarasinha’s assumption was: ‘assigning value to lives is unacceptable — therefore we must fight it’.
And the latter is the assumption that we need to start with if we want to get out of this capitalist hellscape into something splendid.
In Health Communism, Beatrice Adler-Bolton and Artie Vierkant make a similar argument. Struggles for genuinely universal healthcare contain truly revolutionary potential because they break down the very logic of capitalism, which is a logic of scarcity and of valuing some lives over others for the sake of endless profit for those at the top.
And, my beloveds, engaging in these struggles, drawing the red line and point-blank refusing to accept care rationing, is how we start building a new world of love.
To be continued…
In the next instalment, we’ll explore the political economic argument for care abundance, arguing that care does not have to be a scarce resource — via a discussion of the nature of money. Stay tuned!
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