Living with Disability in the Time of COVID

Despite being the largest minority in the world, including about 1 in 5 Canadians[i], we often forget about disabled people. Those whose bodies and minds function differently are often an afterthought and, when we do seek out stories about disability, we often privilege parents or professionals’ opinions over first-hand accounts[ii]. We assume disabilities are caused by bodies in disrepair and, for this reason, disability principally falls under the watchful gaze of the medical establishment, whose role is to “fix” bodily difference and return people to a state of normalcy[iii]. The field of Disability Studies seeks to trouble this assertion, exploring the ways the physical and cultural milieu can be just as disabling as impairment itself—dubbed the social model of disability[iv]. Perhaps instead of fixing people we should focus our efforts on fixing the environments we have built around them. A relatively new field, Disability Studies has grown rapidly in the past two decades with courses and programs popping up around the world aimed at thinking about disability differently[v]. Bringing a Disability Studies lens to the COVID-19 pandemic then asks us to consider both the corporeal consequences and the ways systems, policies and environments can reify ability/disability binaries and further marginalize those on the wrong side of the virgule.


Considering Complex Lives, Value and COVID-19

Born with a rare form of muscular dystrophy, I have always been told that one of the greatest risks to my life is pneumonia. Lungs weakened by the disease leave me with what doctors call an “unproductive” cough often unable to do the work necessary to clear typical colds and flus. Several times in my life, pneumonia has required lifesaving stays in the ICU. COVID-19 feels like something out of a nightmare: a highly contagious illness that aggressively targets lung function. I went into isolation in early March and, with the primary fear of immediate death slowly burning away, I like many others with “underlying medical conditions” am realizing that the illness is not the only thing that may end our lives during this pandemic. Failing support systems may be just as deadly.

For someone like myself, the COVID-19 pandemic draws into focus the feeble, unwinding threads of socio-medical entanglements that struggled, in the best of times, to carry the weight of my disabled existence. Grocery stores, largely inaccessible before, are now completely out of reach, a space far too risky for someone like me to enter. Access to technicians able to service my personal adaptive technology, from electric wheelchair to critical cough assist machine, becomes fraught in a world of social distancing. Early in the pandemic, the Assistive Devices Program that funds these vital pieces of equipment was deemed non-essential[vi]. Home care routines with personal support workers, an already complex interdependent lifestyle, are now strained by anxieties of proximity, contamination and risk as we have seen with scattered outbreaks in group homes and retirement communities[vii]. If one or more of my PSWs catches COVID-19, I may unable to find coverage for all my care needs for weeks at a time. This could result in my parents, entering the at-risk age group themselves, to come out of isolation to keep me alive, risking their own lives in the process. If I catch COVID-19, my staff will require personal protective equipment, currently in short supply for front-line workers in hospitals, to safely continue to deliver care at home. If hospitalized, strict visitation restrictions mean I will lose access to my daily support, becoming fully dependent on overworked nurses to provide the near 24/7 care that I cannot do for myself, everything from getting a drink of water to turning at night to prevent bedsores.

These life sustaining systems now threaten to snap under the added strain. As scary as the sickness is in and of itself, disabled people hang in the balance of frayed support systems long bound together by fibers of ethical and charitable ideals that likely offer little protection from the smoldering embers of eugenic rationality eager to secure a future for the young and virile at the expense of the old and fragile. We are told, depending on our ability to flatten the curve, that hard decisions will need to be made about who can and cannot be saved. We may be asked to debate the “value” of a person and determine how productive or survivable one must be to merit receiving care. Those most at risk are already experiencing the cultural and legal pressures of necropolitics[viii], asked to sacrifice themselves for the benefit of those deemed more valuable[ix].

But why should we be your sacrificial lambs? Why should we offer as tribute our lives to sustain a culture that has long imagined our needs as “special” and only supported when there is a surplus of time and resources?

Times of crisis can bring out the worst in us, left to make cruel decisions sanitized by the rationality of survival. We believe to save ourselves others must perish. We eagerly draw lines between us and those who act, sound, look and live differently. But in confronting this existential threat we must ask not just how to survive but how to live with ourselves once it has passed. We should remember that the vulnerable amongst us have value beyond what a policy document can articulate. We must consider how our current system has left us with these types of awful choices. We should think of how to rebuild a country that does not require us to make such decisions atop the wreckage left behind by COVID-19.

Policy Recommendation / Call to Action

Quantifying an individual’s “predictive value” is a perilous task both in determining what constitutes an appropriate measure (what makes someone “worth” saving?) and limiting pre-existing system and/or social biases (how do you correct for an already “under valued” group?). It is simply not possible to equitably distribute care resources in the ways we might generally believe. Medical triage schemes guided by survivability, system cost or neoliberal value claims are not rational or natural, but a subtle eugenicide triangulated on the intersection of physical, cognitive and social difference.

We must reject these types of policy suggestions and consider a genuine equitable distribution of health resources regardless of the patient in need of care.

About Jeff Preston

Jeff Preston, Ph.D., is an assistant professor of Disability Studies at King’s University College at Western University where he teaches classes on disability, popular culture and policy. A long-time advocate and motivational speaker, Jeff’s work focuses on the intersection of disability, subjectivity, biopower and culture. Jeff’s first book, The Fantasy of Disability, was published in 2016 by Routledge.

Citations

[i] “The Daily — Canadian Survey on Disability, 2017,” Statistics Canada | Government of Canada, November 28, 2018, https://www150.statcan.gc.ca/n1/daily-quotidien/181128/dq181128a-eng.htm.

[ii] Beth A. Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: The Advocado Press, 2010), 33.

[iii] Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (New York, Vintage Books, 1975).

[iv] Michael Oliver, Social Work with Disabled People, 1st edition, Practical Social Work Series (London: Palgrave Macmillan, 1983).

[v] Pamela Cushing and Tyler Smith, “Multinational Review of English Language Disability Studies Degrees and Courses,” Disability Studies Quarterly 29, no. 3 (July 20, 2009), https://doi.org/10.18061/dsq.v29i3.940.

[vi] Laurie Monsebraaten, “Activists Fear for Safety of People with Disabilities after Funding for Mobility and Medical Devices Deemed Non-Essential,” Toronto Star, April 13, 2020, sec. GTA, https://www.thestar.com/news/gta/2020/04/13/activists-fear-for-safety-of-people-with-disabilities-after-funding-for-mobility-and-medical-devices-deemed-non-essential.html.

[vii] Brian Platt, “As Canada’s COVID-19 Death Toll Passes 1,000, Attention Focuses on Long-Term Care Homes,” National Post, April 16, 2020, https://nationalpost.com/news/politics/as-canadas-covid-19-death-toll-passes-1000-attention-focuses-on-long-term-care-homes.

[viii] Achille Mbembe, Necropolitics (Durham: Duke Univ Press, 2019).

[ix] Steve Benen, “Texas’ Dan Patrick: Many Seniors Willing to Sacrifice for Economy,” MSNBC.com, accessed April 21, 2020, https://www.msnbc.com/rachel-maddow-show/texas-dan-patrick-many-seniors-willing-sacrifice-economy-n1167521.


If you are interested in contributing to Voices from the Margins of a Crisis, please email Tanya Benjamin at tbenjam4@uwo.ca and Eaman Fahmy efahmy@pillarnonprofit.ca