In the wake of the H1N1 pandemic, the Alabama Emergency Management Agency created a protocol for rationing ventilators in the event of an even more severe public health crisis. The Criteria for Mass Ventilator Triage stipulated that certain conditions should preclude a patient from ventilator treatment to conserve resources for others. Activists recently filed a civil rights complaint with the U.S. Department of Health and Human Services, alleging that the Criteria would discriminate against COVID-19 patients with intellectual disability (ID). Alabama assured the public that it wouldn’t implement the Criteria in the fight against COVID-19. But the proposed exclusions, combined with their public support, reveals that eugenics continues to shape American thought about ID.
Eugenics is the practice of identifying “undesirable” traits and subsequently discouraging the survival and reproduction of individuals who have them in order to improve society. According to disability studies scholar Lennard J. Davis, the development of statistics in the mid-nineteenth century created new cultural attitudes about human worth. The concept of normalcy presented the ideal, which was previously considered unachievable by any individual, as anyone above the statistical average.[1] The thought that individuals could be ideal ushered in “the notion of progress, human perfectibility, and the elimination of deviance,” also known as eugenics.[2] ID, then called “feeblemindedness,” became a target of eugenics because it represented intelligence below the designated norm.[3]
Although eugenics became a widely held societal belief,[4] medical professionals implemented eugenic measures. As eugenics became firmly rooted in American thought, “protecting the normal from the abnormal became a broad medical and social imperative undertaken in the name of progress.”[5] Mentally disabled people in particular were institutionalized without their consent in the name of therapeutic intervention. The Supreme Court justified doctors’ decisions to forcibly sterilize tens of thousands of disabled people, many of them with ID, “for the ‘protection and health of the state.’”[6] Medical professionals didn’t merely condone the idea that ID was a negative trait which should be eliminated; they spearheaded this idea using their authority and prestige.
While many of these abusive practices ended, systemic injustices fueled by the eugenic impulse to segregate the disabled from the non-disabled continue. Despite the deinstitutionalization movement of the 1960s, many people with ID remain institutionalized. Ricardo Thornton, who survived abuse in an ID institution, remarked that quarantining makes him feel as though “we’re being punished again.” For many people with ID living through this crisis, memories of abuse by medical professionals are fresh.
Although the Criteria continues the long history of the medical profession’s mistreatment of ID patients, some physicians don’t take disabled people’s concerns about discrimination in the course of COVID-19 treatment seriously. For example, at Duke University’s Coronavirus Conversations: Rationing, Shortages, and Triage: Pandemics and Medical Decision Making event, the first topic of discussion was discrimination against disabled people. The presiding bioethicist and pediatrician reassured the audience that exclusion criteria would be based on conditions which “objectively limit life expectancy, not [by] assuming quality of life.” Neither of them empathized with activists or acknowledged that institutionalized ableism prevents objective assessment of a patient’s condition.
The Criteria not only confirmed that activists’ concern about discrimination was grounded in reality, but also revealed the extent to which eugenic rhetoric continues to guide decision making. The exclusion criteria included end-stage cancer, immunocompromise, and heart, kidney, and lung disease.[7] While these disorders can be considered disabilities, they objectively limit a patient’s likelihood of survival. However, the Criteria also excluded anyone with “severe, irreversible neurologic event or condition with high expected mortality.”[8] A “severe, irreversible neurologic event” meant “severe mental retardation, advanced dementia or severe traumatic brain injury” resulting in “severe functional impairment.”[9] This part of the protocol was informed not by the utilitarian principle of saving the most lives, but by the eugenic principle of saving the most lives deemed worth saving.
The Criteria guidelines for excluding people with ID were subjective. While the Criteria acknowledged that “[t]he average life expectancy of persons with mental retardation now spans to the seventh decade and persons with significant neurological impairments can enjoy happy productive lives,” doctors were told to consider “premorbid function in all domains of life including social, intellectual, professional, etc.”[10] This protocol instructed doctors to judge patients’ capacities to “enjoy happy productive lives” based on their perceived “social, intellectual, professional” achievement before they fell ill. Furthermore, terms like “significant” and “severe” ID are undefined, leaving them up to interpretation.
Like earlier eugenic measures, the Criteria allowed medical professionals to make judgments about disabled people’s quality of life couched in scientific language. According to Davis, people deemed “abnormal” under eugenic regimes such as Nazism were said to have “lives not worth living.”[11] The Criteria similarly encouraged doctors to save patients they deemed to have the potential to “enjoy happy productive lives.” ID, whose causes are often unknown, was reclassified in the Criteria as an “end stage organ failure” like heart failure (7). If the physician determined an ID patient’s degree of functioning too low to justify intubation, “organ failure” disqualified her, not disability. This scientific language obfuscates what the doctors would’ve been doing—allocating treatment based on their opinion about a patient’s quality of life.
The public’s response to the Criteria shows that eugenic thought remains pervasive in American society. After Alabama revoked the Criteria, many Reddit users defended the discrimination. One commented, “The ability to provide self-care is a key point in survival—you can say the words IQ or senility or psychosis out loud or not.”[12] Philosopher Eva Feder Kittay, who has a daughter with ID, points out that individuals who cannot communicate verbally or depend on others “fail to fit the definition of…a subject due justice.”[13] They’re considered to not have lives worth living, or preserving in an emergency. Even without institutionalized discrimination like the Criteria, the insidious bias against ID people rooted in eugenics might still influence practitioners’ decisions.
In times of crisis, the definition of humanity must be broadened rather than reduced. Philosopher Tobin Siebers believes “disability rights hold the key to universal human rights” because “[t]he catastrophes and calamities of history do not destroy human institutions without first striking down human beings.”[14] Instead of insisting upon independence and able-bodiedness in a public health emergency, we must admit dependence and frailty make us human. Doing otherwise undermines the legitimacy of those “liberal democratic structures that appear to many as requirements for a just society,” like the unemployment benefits supporting workers laid off due to COVID-19.[15] In order to safeguard the structure of our society, we must protect its most vulnerable members.
The Criteria exposed the extent to which eugenics continues to shape our beliefs. It would’ve allowed physicians to make life and death decisions about an ID patient’s care based on their perceived quality of life, continuing a long history of mistreatment of this group under the guise of medical care. Although this specific protocol will never be implemented due to activists’ efforts, the public’s support demonstrates eugenic logic extends far beyond the Criteria. However, disability scholars Feder Kittay and Siebers believe the eugenic impulse to devalue our society’s most vulnerable members in times of crisis will not speed our collective recovery but instead hamper it.
Notes:
[1] Lennard J. Davis, “Introduction: Disability, Normality, and Power,” The Disability Studies Reader, edited by Lennard J. Davis (Routledge, 2017), 5.
[2] Davis, 6.
[3] Davis, 7.
[4] Davis, 6.
[5] Rachel Adams, Benjamin Reiss, and David Serlin, “Disability,” Keywords for Disability Studies, edited by Rachel Adams, Benjamin Reiss, and David Serlin (NYU Press, 2015), 6.
[6] Sayantani Dasgupta, “Medicalization,” Keywords for Disability Studies, edited by Rachel Adams, Benjamin Reiss, and David Serlin (NYU Press, 2015), 121, emphasis mine.
[7] Annex to ESF 8 of the State of Alabama Emergency Operations Plan: Criteria for Mechanical Ventilator Triage Following Proclamation of Mass-Casualty Respiratory Emergency. Alabama Emergency Management Agency, Revised April 9, 2010, 6.
[8] Criteria, 6.
[9] Criteria, 8.
[10] Criteria, 8.
[11] Lennard J. Davis, “Introduction,” Beginning with Disability: A Primer, edited by Lennard J. Davis (Routledge, 2017), 13
[12] Note that a bot moderator has removed most of the particularly egregious comments, including the one I cite in the article.
[13] Eva Feder Kittay, “Centering Justice on Dependency and Recovering Freedom,” The Disability Studies Reader, edited by Lennard J. Davis (Routledge, 2017), 306.
[14] Tobin Siebers, Disability Theory (University of Michigan Press, 2011), 185, 178.
[15] Feder Kittay, 307.
Olivia Harris is a rising senior at UNC, where she is double majoring in American history and English with a concentration in science, medicine, and literature and minoring in medical anthropology. Her academic interests include the social determinants of health in the past and present, trauma studies, disability studies, gender and sexuality studies, and the history of slavery and emancipation in the United States.