Found an unpaywalled copy! Sorry I don't feel like formatting (it's 4:33 AM): Just read the full text via the cryptpad link.cryptpad.fr/file/#/2/file/G8WCxDDDti61QDEPMSqY90vh/“You may now become who you thought was disposable”:
COVID-19 Politics and Ableism
Andrea Kitta
Journal of American Folklore, Volume 137, Number 545, Summer 2024,
pp. 321-330 (Article)
Published by American Folklore Society
For additional information about this article
muse.jhu.edu/article/931461[37.228.238.33] Project MUSE (2024-07-09 12:59 GMT) American Folklore Society
This essay critically examines the intersection of COVID-19, Long COVID, ableism,
and health care disparities in the United States, emphasizing the transformative
impact of COVID-19 as a mass disabling event with a disproportionate impact on
marginalized communities. I also bring an autoethnographic lens to my experi-
ence of COVID-19 and Long COVID, underscoring the importance of recognizing
the diverse and often untellable experiences of individuals with disabilities and
challenging the prevailing ableist perspectives embedded in society. I raise ethical
considerations of storytelling in the context of Long COVID and urge researchers to
embrace empathy and a more inclusive approach that challenges traditional notions
of objectivity and distancing within academic research. I call for a collaborative
approach between disability studies and folklore studies, encouraging scholars to
interrogate and explore the traditions shaped by experiences of disability.
On December 13, 2020, disability advocate Imani Barbarin created a TikTok
where she stated in the caption: “COVID is a mass disabling event. Things will never
be the same. Never. You may now become who you thought was disposable” (Barbarin
2020). Barbarin was not overstating what is happening in the United States. In addi-
tion to the overwhelming number of US-based COVID-19 deaths (1.07 million as
of November 1, 2022, according to the New York Times COVID-19 Tracker [New
York Times 2023]), there is also an alarming number of cases of post-acute sequelae
SARS-CoV-2 infection (PASC) or, as it’s more commonly known, Long COVID. Long
COVID happens in anywhere from 5 percent to 50 percent of COVID-19 infections
(although most medical experts agree the rate of Long COVID is somewhere around
20–30 percent of all infections). Long COVID affects women at a 22 percent higher
rate than men (Sylvester et al. 2022:1391), and one study of Long COVID listed over
200 symptoms (Davis et al. 2021). The most common symptoms are fatigue, short-
ness of breath, cough, chest pain, brain fog, sleep disturbances, depression, joint pain,
and dysautonomia (a dysfunction of the autonomic nervous system that typically
presents as the inability to control temperature, breathing issues, and other things the
body normally controls automatically). Current estimates of those affected by Long
COVID in the United States are between twenty and forty million. COVID-19 has
also been shown to reactivate other viruses (Gold et al. 2021; Chen et al. 2022; Su et
al. 2022), and one current theory is that Long COVID is the result of the COVID-19
virus continually being reactivated in the body (Klein et al. 2022). The latest research
out of Yale University shows that COVID-19 cases entail cellular changes to the B
and T cells, lower levels of cortisol, and that the virus can reactivate other viruses
(Su et al. 2022:891–2). A recent study with more than 154,068 participants showed
that “in the post-acute phase of COVID-19, there was increased risk of an array of
incident neurologic sequelae including ischemic and hemorrhagic stroke, cognition
and memory disorders, peripheral nervous system disorders, episodic disorders (for
example, migraine and seizures), extrapyramidal and movement disorders, men-
tal health disorders, musculoskeletal disorders, sensory disorders, Guillain–Barré
syndrome, and encephalitis or encephalopathy” (Xu, Xie, and Al-Aly 2022:2406).
Both COVID-19 and Long COVID exposed inequities in the US health care sys-
tem, with Black, Indigenous, and people of color (BIPOC) populations dying from
COVID-19 at much higher rates than White people at the beginning of the pandemic.
Compared to White people, Alaskan Indian or Alaskan Natives died at 2.1 times the
rate, Black people at 1.7 times the rate, Hispanic or Latinx people at 1.8 the rate, and
Asian Americans at 0.8 times the rate (CDC 2023). According to the Washington
Post’s analysis of CDC’s statistics, the rate of White people dying from COVID-19
became equal to the rate of other groups beginning in October 2021, then (except
for the Omicron wave) increased, primarily due to White people being unvaccinated.
Strangely enough, the equalizing trend wasn’t because death rates dropped for BIPOC
people, but rather was due to the rise of the White death rate. Tasleem Padamsee,
Assistant Professor at The Ohio State University who researched vaccine use and who
is a member of the Ohio Department of Health’s work group on health equity, stated:
“Usually, when we say a health disparity is disappearing, what we mean is that . . . the
worse-off group is getting better. . . . We don’t usually mean that the group that had
a systematic advantage got worse” (quoted in Johnson and Keating 2022).
Additionally, at the time of this writing in Spring 2023, the pandemic has been
declared as “over” despite the fact that around 400 people are still dying per day in
the United States and that those dying tend to be people with disabilities and the
elderly (New York Times 2023). It’s difficult to imagine a situation where 400 deaths
a day are deemed acceptable, yet here we are. Many people are desperate to “get back
to normal” and seem to care more about going maskless or dining indoors than
they do about those who are dying of COVID-19. Those who are unvaccinated and
unmasked also seem to not understand (or not care) that the longer they continue
on that path, the longer the pandemic will take to dissipate. Simply put, the majority
of people do not seem to care about people with disabilities, including those who are
immunocompromised, and their increased health risks due to the pandemic.
People with disabilities are an unrecognized health disparity population, and they
died at much higher rates during COVID-19 (Krahn, Walker, and Correa-de-Araujo
2015). The National Council on Disability found that 181,000 people with disabilities
in long-term care facilities died from COVID-19 in the first year of the pandemic, mak-
ing up one-third of COVID-19 deaths at that time (National Council of Disabilities
2021). The report is worth quoting at length.
