Slow Death:On Burden

“”The phrase slow death refers to the physical wearing out of a population in a way that points to its deterioration as a defining condition of its experience and historical conditions.” – Lauren Berlant, Slow Death

“The dominant event is the development of luxury, the production of increasingly burdensome forms of life.” — Georges Bataille, The Accursed Share

Berlant’s idea of slow death arises in the context her discussion of the agency of populations or groups whose main characteristic is their physical and/or psychical attrition. This particular statement is of course generalizable to all persons at some point but is particularly true for medically vulnerable populations for whom the body’s — how should we say? — non-compliance with the expectation that it get better or improve might be its defining characteristic. Those with chronic illnesses or degenerative conditions seem to fit the bill here, although Berlant exemplifies this with groups for which the activities of sustaining life are intimately tied to deterioration — a primary example that she marshalls is the activities surrounding eating and — for some — obesity.

It is worth noting that the experience of slow death does not endow one with some sort of existential privilege — as if being a body defined by deterioration, of having an unreliable body were somehow going to be noble marks of political or ethical resistance to something sinister. The unreliable body is not the analogue of what Sarah Ahmed calls the feminist killjoy — the person who has developed the principled skill of getting in the way of malicious stupidity. No — an unreliable body is just that — unreliable. It does not then–via some Hegelian voila–become a super-power or a point of repudiation of capital or our abject forms of governmentality. Nonetheless, this unreliability does a couple of things: it highlights the ways that reliability is currently weaponized by the state, it marks the temporality of the body’s “progression” through its deteriorated state, and it helps refine the sense of the burden involved in progressive bodily atrophy.

On the first point, it should be enough to point out that the current administration is about kick millions people off of Medicaid. They have also reclassified what might have been unreliable bodies as reliable for the purposes of work. The equivalence of illness with inability to work masks what is genuinely pernicious about this rule, which is that is supposed to remove people from Medicaid by dint of bureaucratic mistakes of and application errors. The gradual wearing out is not because you are ill or disabled; it’s because you have to repeatedly perform it and document it — mistakes in enrollment aren’t “intentional” but they are built into the process. A feature not a bug.

On the second, a question arises when we consider slow death: “How slow is slow?” This point is particularly highlighted by ataxia and its relatives — Parkinson’s, ALS, Huntington’s. One of the points of slow death is that it takes effect through the everyday accretion of pressures, bodily insults, practices, and experiences of “choice” or “freedom.” The temporality of slow death is uneven, messy, and non-linear although it is relentlessly progressive. It is a-traumatic, regularized, gradual. There is no primal scene, no theatre of “the moment it all changed.” It refuses the logic of some original physical or psychical injury that plays out later, at a distance: in the case of ALS and Parkinson’s, for example, it is because their origins are still not well understood (although the correlation of CTE and playing American football and ALS belie this general fact); in the case of hereditary ataxias, where we know more about genetic origins, it is because the wide variation in the way cases appear makes it difficult to say why one case shows up earlier or with more acute symptoms than another.

On the third point, persons with unreliable bodies are often characterized according to the burden that they place on “normal” everydayness. The sense of burden has a number of different registers of meaning, but it is important to recognize that, although this is frequently denied in polite conversation, this is an irreducible experience of slow death. This is corroborated by any number of psychological strategies used to deny, dismiss, or deflect from the burdens of the disabled body: “Christian” denial (“s/he’s not heavy, s/he’s my brother”), gratitude for bare existence (“I am just grateful to be alive”), toxic positivity (“It was the best thing that ever happened to me!”), non-conformist posturing (“Be an Ataxia Rebel!” ). It’s not that any of these postures are bad or wrong — I recognize myself in all of them — but that they privatize the disabled body in such a way as to render disability a biological instead of social event. In perfect Freudian fashion, they affirm what they deny in the gesture of denying it.

An economic meaning of burden is readily available in the current way that disabled persons’ therapy clinics have become the target of capital in form of private equity. As we recall, private equity has its history of in the leveraged buy-outs of the 1980’s: its pedigree has been burnished by the rhetoric of Schempeterian “creative destruction,” though the strategy has proved remarkably durable: having loaded up target businesses with the debt used to acquire them, they are stripped for assets and forced into stratagems of belt tightening. In the case of autism therapy clinics, these have meanings for — to take just one example — children’s nap times: the NYT recounts that, since services at the autism therapy clinic are billed in 15 minute increments, naps are limited to 7 minutes, which allows the clinics to bill for the entire period. In this case, what is most important is that children’s sleep not inhibit the unremitting imperatives of capital accumulation, which in this case is synonymous with the gradual wearing out of children.

Personally, the affects surrounding burden include a lot of guilt, shame, and ambivalence, much of it not entirely conscious. Many of these feelings are inversely proportional to my own identification with the frictionless efficiency of capitalist reason, with the need for accomplishment and feeling “capable,” or “good” for or at something. However, the affective state that characterizes my own experience of burden best is irritation; irritation at how long everything takes, irritation at the disruptions to “normal” everydayness — Why can’t I take out the trash? — irritation at people who infantilize me, irritation at people who patronize me — “you carry yourself well”. And then there is the additional the emotional work that it takes to try and curb rather than spill my own irritation. I am only partially successful at this.