In the Time of Pandemic, the Deep Structure of Biopower Is Laid Bare

Lennard Davis

In regard to disability, the ableism that puts on a compassionate mask in milder times now reveals its brutal face. While laws like the Americans with Disabilities Act acknowledge human rights and subjectivities involved in disabled identity, a pandemic brings into play a war of survival whose rules are simpler and deadlier. Limited resources and pressured levels of triage create a situation in which medical decisions have to be made quickly and almost reflexively.  When those kinds of pressured judgments occur, health practitioners must rely on a wartime gut reaction as well as a combination of health ethics templates and cost-benefit analyses assessing whose life is worth saving and whose is less so.

Any metric used for determining who should get limited resources will inevitably be drawn into a eugenics sinkhole. It is here that biopolitics and thanatopolitics display a unity which might have seemed to have been oppositions.  The urge to let live and the urge to let die morph nicely into each other.  In order to let live, doctors must let die. An unenviable choice arises at every tension point in every hospital in every country. This proliferation of life/death decisions blunts the emotional response to what might be seen as programmed executions or even annihilations.

MIT-Low-Cost-Ventilator

While biopolitics and thanatopolitics have been drawn to dramatic personae like the comatose patient and the concentration camp prisoner, the more mundane bit players—the person with mobility impairments or the cognitively disabled person—barely get attention. Those in disability studies are well aware of this minor role assigned by the majority to the minority. Yet the actuality is that the disabled or Deaf person experiences the effects of communitas and immunity on a rather consistent and, to others, undetectable basis.

Bare life can be translated to equate with various physical and mental states, but it rarely includes, nor should it, people with what I might call routine disabilities.  The driving out of the homo sacer seems dramatically if not historically sound; but the social and political sequestering of disabled people, while far less dramatic, is far more widely practiced, even by people whose goal is to be intersectional and liberatory.

Enter the pandemic which, like a skilled taxidermist, lifts off the skin of this kind of discrimination to find the invidious structural armature that gives it shape and form. Now there seems to be a greater availability of ventilators (but only in richer countries in the global north) and a realization that some other life-saving techniques might work as well.  With a free market vision of limited supply and expansive demand, not only did the price of such equipment skyrocket, but the cultural capital, one must ultimately call it, of each individual determined their power to secure a machine, skilled nursing, and trained technicians. I say individual, but in reality, protocols were being developed to group individuals into risk groups.  Those who were older, disabled both physically and cognitively, were seen to have reduced buying power to claim treatment.  Those with underlying conditions (read: disability) who were less healthy (read: normal) were also to be triaged.

Who is worth more than whom?  Medical ethicists, and I use the word advisedly, have tried to quantify this worth.  There is a WHO metric called “disability adjusted life years.{DALY].” This measures years lost to disability and compares those years to those of someone in “ideal” health.  One can calculate the difference between your and my DALY and see, in effect, whose life has more value. Currently in the US a human life is calculated to be worth ten million dollars.  In poorer countries that worth could plummet to colonial chump change.

It may seem logical and even obvious that in pandemic settings, as on the battlefield, there must be triaging.  Many states have adopted such utilitarian guidelines, including the state of Washington, cited in a complaint by disability groups because Washington’s official guidelines recommended giving limited resources only to younger, healthier people, not to older patients. Alabama has specified that people with intellectual disabilities “are unlikely candidates for ventilator support,” while Tennessee has excluded from critical care people with spinal muscular atrophy who need assistance with activities of daily living. As with the social and political critiques of utilitarianism, one might want to be skeptical of any “greatest good for the greatest number” argument.  While founding texts of utilitarian philosophers usually grounded their arguments on economic principles, current applications fall prey to simple analogies.  Disease is translated to discussions about health.  Health is notoriously hard to define, but healthier patients become the priority.  The ideology of health is deeply imbued with ableist notions of the normal and the abnormal.

beds

In contrast to the utilitarian approach, the Disability Rights and Education Defense Fund [DREDF] suggests “When dealing with patients with a similar level of treatment urgency, providers should maintain their existing practice of ‘first come, first serve,’ rather than prioritizing people who would require the fewest resources.”  Ezekiel Emmanuel and others, while recognizing certain well-worn aspects of triage note in the New England Journal of Medicine “Limited time and information during an emergency also counsel against incorporating patients’ future quality of life, and quality-adjusted life-years, into benefit maximization.” Some have suggested a lottery system in which the health identity of the person is not a factor.

In the battle between letting live and letting die, there really is only one grand loser—the person with a disability or two. You can throw in old people, people who are overweight, people of color, poor people.  Yes, they are there, but the calculus within the hospital walls is basically over disability.  Race will factor in dramatically, and its combination with disability is an accelerant to any eugenic decision-making process. Social politesse, charitable involvement, religious concern all crumble in the face of the grand bargain of choosing those who appear “normal”—not those who are seen as weakened, abnormal, debilitated, less-than. There is a term for this demographic, and the Nazi’s used it with abandon Lives Unworthy of Living. The T4 Project, which gathered disabled people into institutions and then gassed and cremated them, provided the template for the death camps in Poland for Jews and other minorities. It is easy for us to blame the Nazis for these egregious and unimaginable deaths, but the current calculus about which lives are worth living provides a sobering if less overtly dramatic parallel.

In some sense, the discussion over the healthy person is a discussion about the formation of the modern citizen.  As Michel Foucault and others have noted, the development of a medical system is of course also a system of control.  If it works well, it is hidden and undetectable—powered by self-will rather than heavy-handed regulation.  And the system has worked very well, until now when the evolution of the word “health” suddenly becomes more clearly a way of talking about power and setting one group over another.  Enforcement now becomes a matter of medical metrics in a time of necessity.  This can be shown through a simple thought-experiment.  Choose any identity—gender-based, income based, race-based—and put it into the sentence “[People with this identity] won’t be given ICU beds during a time of pandemic shortage.”  While there is still clearly sexism, homophobia, racism, and neoliberalist capitalism, no one can publicly make that statement.  But include the term disability and the statement is being made without much embarrassment or consequence around the US and the world.

As the pandemic waxes and wanes, its tidal undulations will continue to affect populations and policies.  While ventilators may be in better supply, a new spike in cases could counteract that advantage. Even now, as I write, Texas is facing a shortage of hospital beds.  Countries in South Asia, Latin America and parts of Africa are unable to secure and provide even the basics for treatment, including ventilators, and oxygen tanks.  When the time comes for an effective vaccine to be distributed, again we will see shortages—and metrics to determine distribution—in the push to provide immunity to a staggering number of people worldwide. If herd immunity requires 80 percent of the population to be vaccinated, in the US alone that would be somewhere around 260 million doses (if only one dose per person is required) and worldwide that would be six billion doses.  Issues around cost (read: profit for the pharmaceutical industry), class (read: global north versus global south) and minority status will be crucial.  There will more life and death decisions about who is first in line.  In this case vaccine delayed could be vaccine denied.

And now we are seeing remnants of discrimination based on health status in institutions like nursing homes.  These for-profit institutions are uniquely suited to make decisions about who lives and who dies. Recently nursing homes  have begun evicting elderly people with disabilities so that they can bring in more lucrative patients with COVID-19.  When cognitively disabled people contract COVID-19, they die at a rate 2.5 higher than other patients.  The social and medical forces at work clearly have placed these lives at the bottom of lives worth living. Until critical theory and social justice advocacy recognize this form of devaluing human life, a liberatory approach will only be partial–and far from impartial.

26 June 2020


Lennard J. Davis is Distinguished Professor of Liberal Arts and Sciences at the University of Illinois at Chicago in the departments of English, Disability Studies and Human Development, and Medical Education. His most recent book is Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Rights (2016) and he is the editor of the Disability Studies Reader (2013) and Beginning with Disability: A Primer (2017).

 

1 Comment

Filed under 2020 Pandemic

One response to “In the Time of Pandemic, the Deep Structure of Biopower Is Laid Bare

  1. Pingback: Posts from the Pandemic | In the Moment

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