Disability, COVID 19, and the Medical System
People with disabilities represent the largest minority in the United States, yet coverage on the pandemic rarely considers an analysis of how disabled people were affected by COVID - 19. Broadly, this lack of coverage is just one way by which ableism, discrimination against disabled individuals, manifests. Broadly, the COVID - 19 pandemic demonstrates the way by which ableism manifests itself as a system of power both in general society within healthcare systems. It's critical the field of medicine interrogates itself and shifts the paradigm by which it views care.
COVID - 19 served to illuminate the broader structures of ableism. To see evidence, one only needs to take a look at their computer screens. Accommodations that disabled people have been fighting for years to be the norm, such as hybrid/virtual meeting options and the ability to work from home to circumvent the barriers of transportation, access, and physical and mental stamina, were immediately put into place when nondisabled folks needed them to continue working during the pandemic. And, while this was celebrated as an example of our flexibility, resiliency, and determination as a broader society in “these troubled times,” for folks with disabilities in years prior, fighting for accommodations was seen as an act of narcissism and ungratefulness. As Lennard Davis, internationally known author in disability studies and Distinguished Professor of English at the University of Illinois at Chicago, wrote in his article Bending over Backwards: Disability, Narcissism, and the Law, that individuals who seek accommodations are given the perception they are “ attempt[ing] to claim themselves as an exception to the rules of society, which allows them to overstep the bounds assigned to normal people.” Rather than accommodations being seen as something that helps bring individuals with disabilities achieve equity with their nondisabled colleagues, it's been framed as a “benefit” that allows disabled people to unfairly get ahead. And now, as the world begins to open up and people return to personhood, many of these accommodations will disappear as well - despite them being successful - leaving people with disabilities back to their original position: fighting for equitable accommodations despite being seen as ungrateful.
And, it's worth highlighting, it's not just through the hypocrisy of accommodations that COVID exposed ableism - it's found everywhere. Disability activist Imani Barbarin, explores how anti-vaccination movements use ableism in their discourse, not wanting their children to get the vaccine, lest they end up with autism. The public shame of not getting a vaccine often ignores people with disabilities who medically can’t get the vaccine or lack the means of access to go to a clinic, and can unfairly force individuals to reveal their medical illnesses and disability. COVID - 19 overwhelmingly killed individuals in institutions, nursing homes, and hopices - areas where people with disabilities are found.
Along with the general population during this pandemic, the medical field too has struggled with its approach to disability. The case of Michael Hickson demonstrates many of these problems so effectively: rather than be given comparable quality of care to a nondisabled patient, Hickson died after he was refused treatment for COVID - 19 as he was a disabled parapalegic, lacking sufficient “quality of life” and therefore was “taking” resources belong to someone else. During this pandemic especially, with healthcare workers being told to divert resources to patients who have the best possible outcome for care - a metric that excludes disabled people, who are often considered to have a worse quality of life by the simple virtue of having a disability, even though that is just not true. But it would be wrong to argue this was a one time situation brought on by the Pandemic. In her essay, Healthcare as Eugenics, Ani B. Satz, professor of law at Emory University, draws comparisons between the logics of past historical movements of eugenics, which sought to eliminate disability through state run programs of sterilization of disabled folks and the creation of disabled movements, and the current field of medicine. Both the field of medicine today and past eugenics movements were centered on eliminating disability, seeking to “cure” the population and push for typical forms of functioning, such as surgery, rather than look for atypical modes of function, power chairs, that may lead to the best outcomes for patients. Satz writes “Healthcare seeks to prevent, ameliorate, or eliminate disability with the goal of normalizing individuals.'' This creates the perception of associating disability with loss and stigma, sending a message that “the lives of individuals with disabilities are not as valuable as the lives of individuals who function typically.”
COVID- 19 has certainly exposed the ways which ableism manifests within society and healthcare, but it's deeper roots within modern healthcare signal a need for the medical field to shift its paradigm from one of a medical, cure focused approach of removing disability to a more social, patient centered model of care. This model doesn’t say that curing patients is flawed or wrong, but rather we refocus our care around what's best for the patient outcomes that fits what the patient desires. This approach begins at the medical school level, where adopting disability conscious medical training, which Dr. Quirici, Dr. Doebrich, and Dr. Lunsford describe as “draw[ing] on insights from intersectional disability justice activism” to “improve upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve.”
Barbarin, Imani. "Death by a Thousand Words: COVID-19 and the Pandemic of Ableist Media," Refinery 29, https://www.refinery29.com/en-us/2021/08/10645352/covid-19-and-the-pandemic-of-ableist-media. Accessed 20 Oct 2021.
Davis, Lennard. “Bending over Backwards: Disability, Narcissism, and the Law.” March 2000. Berkeley Journal of Employment & Labor Laws. vol 21, Issue 1, 2000, Accessed 10 October 2021.
Doebrich, Adrienne, Quirici, Marion, and Lunsford, Christopher. ‘COVID-19 and the Need for Disability Conscious Medical Education, Training, and Practice’. 1 Jan. 2020 : 393 – 404.
Pulgrant, Andrew. “How The Disability Community Is Still Conflicted About COVID-19,” Forbes, https://www.forbes.com/sites/andrewpulrang/2021/08/31/how-the-disability-community-is-still-conflicted-about-covid-19/?sh=73bbe7d3517d. Accessed 20 Oct 2021.
Satz, Ani B. “Healthcare as Eugenics.” Duke University Goodson Law Library. Accessed 20 October 2020.