The pandemic revealed the workings of biopower in relation to people with disabilities. In focusing on lives worth living, decisions were made based on metrics about the quality of life of various groups. Ultimately, the pandemic revealed the power structure lurking behind a rhetoric of “care and compassion.”
Inequality in a time of pandemic is nothing new. Boccaccio in his Decameron describes a group of wealthy young people who flee Florence to the hill town of Fiesole to escape the plague and while away their hours telling tales. Another tale teller, Daniel Defoe, in his fictionalized Journal of the Plague Year, says that the first signal of the seriousness of the Black Death in 1660s London was flared when “the nobility and gentry from the west part of the city, thronged out of town with their families and servants in an unusual manner.”1
That the rich should try to escape plagues makes the point that one privileged class of society is better protected than others. We can observe that the poor and the oppressed will bear the burden of not only economic injustice but also medical inequality. But one group rarely written about in literature in regard to pandemic is the disabled. Stories about them normally carve out their existence from the exigencies of political life or medical upheaval that affects the general population. Disability is treated with a mask of compassion. But now, in our time of pandemic, that mask 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 involving whose life is worth saving and whose is less so.
Any metric used for determining who should get limited resources, like ventilators, oxygen, medicines, vaccines, or even hospital beds, will inevitably be drawn into a eugenics sinkhole. It is here that biopolitics and thanatopolitics display unity, whereas in other contexts the two might have seemed oppositional. The urge to let live and the urge to let die morph nicely into each other. 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- and death-preserving decisions blunts the emotional response to what might be seen as programmed executions or even annihilations.
While biopolitics and thanatopolitics have been drawn to dramatic personae like the comatose patient and the concentration camp prisoner, 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. In the height of hospital shortages, there was widespread discussion of how to determine which humans should receive which treatment. With the delta and omicron variants, the ventilator takes a backseat to monoclonal antibodies and antiviral medications. Might it be worth saying just a little bit more about how the struggle to choose the beneficiaries of these seemingly more accessible remedies differs from the drama of the ventilator? These too are determined by supply and demand as well as price gouging and hoarding. With a free-market vision of limited supply and expansive demand, market forces and personal cultural capital come into play. A Darwinian battle of survival displays itself as individuals use their full “worth” to procure life-saving resources. I say individuals, but, in reality, protocols were developed to gather individuals into risk groups. Those who were older and/or disabled both physically and cognitively were seen to have reduced buying power and cultural clout to claim treatment. Those with underlying conditions (read: disability) who were less healthy (read: normal) were also to be triaged.
This is a discussion about worth. Who is worth more than whom? Medical ethicists, and I use the word advisedly, spend a lot of time trying to quantify this worth. A World Health Organization metric called “disability adjusted life years (DALY)” measures years lost to disability and compares those years to those of someone in “ideal” health.2 One can calculate the difference between your and my DALY and see, in effect, whose life has more value. Currently in the United States, a human life is calculated to be worth $10 million.3 In poorer countries that worth could plummet to colonial chump change. Using the DALY measure, we can be subtracting value from a life based on the cumulative debility of various impairments.
It may seem logical and even obvious that in pandemic settings, as on the battlefield, triaging is needed. Many states have adopted such utilitarian guidelines, including the state of Washington, cited in a complaint by disability groups because its official guidelines recommended giving limited resources only to younger, healthier people and denying them 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.4 As with the social and political critiques of utilitarianism, one might want to be skeptical of rationalizing “the greatest good for the greatest number.” While the founding texts of utilitarian philosophers usually grounded their arguments on economic principles related to capitalism, current applications fall prey to simple analogies. Disease is translated to discussions about health. Health is notoriously hard to define, but priority is given to healthier patients to receive limited resources. The ideology of health is deeply imbued with ableist notions of the normal and the abnormal. All these definitions plunge into the bog of medical ethics’ assumptions on the value and worth of lives lived.
In contrast to the utilitarian approach, the Disability Rights and Education Defense Fund (DREDF) suggests that “when dealing with patients with a similar level of treatment urgency, providers should maintain their existing practice of ‘first come, first serve[d],’ rather than prioritizing people who would require the fewest resources.”5 Ezekiel J. Emanuel et al., while recognizing certain well-worn aspects of triage, note in the New England Journal of Medicine that “limited time and information during an emergency also counsel against incorporating patients’ future quality of life, and quality-adjusted life-years, into benefit maximization.”6 Some have suggested a lottery system in which the health identity of the person is not a factor.
Even more puzzling, with the advent of the Pfizer and Merck antiviral drugs, the algorithm seems to have shifted from prioritizing people who were vaccinated and boosted to prioritizing those who had refused vaccination and are therefore more vulnerable. This calculation changes the algorithm of vulnerability from the disabled person to the anti-vaxxer, thus again exponentially increasing discrimination against the former.
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, fat people, people of color, poor people. Yes, they are there, but the calculus within the hospital walls is basically over disability. Race factors dramatically,7 so its combination with disability is an accelerant to any eugenic decision-making process. Social politesse, charitable involvement, and religious concern all crumble in the face of the grand bargain of choosing those who appear normal over those who are seen as weakened, abnormal, debilitated, less-than. There is a word for this demographic, and the Nazis used it with abandon: lives unworthy of living (Lebensunwertes Leben). 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 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 also a system of control. If it works well, it is hidden and undetectable—powered by self-will rather than by heavy-handed regulation. And the system has worked very well until now, when the evolution of the word health suddenly is more clearly a way of talking about power and setting one group over another. Enforcement is now a matter of medical metrics in a time of necessity. How clear this is 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 intensive-care unit (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 made without much embarrassment or consequence around the United States and the world.
As the pandemic waxes and wanes, its undulations will continue to affect populations and policies. While ventilators may be in better supply during the current moment, a new spike in cases or a new variant could obviate that advantage. Medications, skilled ICU nursing care, respiratory therapists, equipment technicians, and the like can’t be ramped up quickly. Even now with an effective vaccine, we see shortages and metrics again in the push to provide immunity to a staggering number of people worldwide. Vaccination rates in low-income nations and the global South are as low as 5 percent.8 Disabled people in those countries will be doubly weakened by lack of access to vaccines and health care in general. Since poverty breeds disability, and disability breeds poverty, the effects of the pandemic, of lack of access, and of poor health care will take a greater toll on this population.
We are also 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. At the height of the pandemic nursing homes were evicting elderly people with disabilities so that they could bring in more lucrative patients with COVID-19.9 When cognitively disabled people contract COVID-19, they die at a rate 2.5 higher than other patients.10 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, its liberatory approach will only be partial—and far from impartial.
See, e.g., New York Times, “Texas Sets Another Record.”