COVID, Disablement, and the “Return to Normal”

It has been one and a half years since the COVID pandemic first took on a widespread national character within the United States. During this span of time, we have witnessed the punctuated cessation of public, social, and economic activity; conflicts and controversies over mask mandates and stay-at-home recommendations; panic over the rationing of everything from the mundane to the serious, toilet paper to hospital beds and ventilators. The virus itself was talked about as a universalizing pathogen that did not discriminate; a threat to each and all of us. Meanwhile, anecdotal and quantitative data began to depict the vastly unequal impact that the pandemic was having on certain demographics of the population—people of color and Black people in particular, Indigenous communities, poor and working-class populations, and especially elderly and disabled people living in nursing homes and congregate long-term care facilities (along with the perhaps less-documented populations of homeless people and disabled people on the verge of entering nursing homes).¹

Suddenly, the nation and the world seemed to find itself living in a protracted emergency variant of reality. From “normal” existence, society metamorphosed into a prolonged state of “abnormality.” Virtually all aspects of social and economic life, previously taken for granted, became inaccessible by degrees to vast numbers of the populace. Physical movement, gathering with friends and family, the desire to meet new people and possible intimates, travel, shopping, even going to a bar or restaurant, all became eminently restricted tasks. Daily activities of personal care and hygiene occupied more and more of people’s functional time and mental concern. The basic process of leaving the house required a great deal of pre-planning and preparation. Anxieties escalated around people’s ability to continue engaging in, or go about finding, paid work that would accommodate their restrictions and needs, and whether their employer would offer paid sick leave if they or a dependent became infected. Access to adequate, affordable, and safe health care likewise became a more generalized and potentially fatal concern. In a word, society itself had become disabled—disabled by the coronavirus; disabled by the actions or inactions of various ruling and hegemonic institutions; disabled by the preexisting social, political, and economic conditions of an unequal and individualistic capitalist society.

Through it all, the watchword of virtually all politicians occupying positions of power within the ruling circles of government—regardless of party affiliation or political persuasion—has been the aim of a “return to normal.” This sentiment resonated broadly across a public chafing under the disabling conditions of pandemic existence. The development and widespread distribution of a vaccine seemed to be the single beacon of hope—even as the novel strain of the coronavirus mutated into more robust and resilient variants, potentially requiring booster shots and additional vaccinations.² It is as if the pandemic purgatory we have been stuck in was a detour off the main road, one wending laterally from the “normal,” desired route. Generalized immunity, then, stands in prospect as an on-ramp back to society’s proper timeline, back to the pre-pandemic vector, back to a “normal” future.

Abnormality Is a Preexisting Condition

For many disabled people in the United States and around the world, however, the abnormal state of things over the last year and a half is not such an estranged discontinuity from the previous state of things. Certainly, just like everyone, pandemic life for disabled people has been exceedingly difficult, painful, oppressive, and deadly. But the “normal” of pre-pandemic life was also exceedingly difficult, painful, oppressive, and deadly. To be disabled in contemporary capitalist society is to live in a permanent state of socially constructed “abnormality.” Illustrator Sam Schäfer, for example, has aptly depicted this phenomenon in a series of graphics on disabled people and the pandemic, published online in early 2021.³

In one of the panels in the comic titled “And Now Here We Are,” Schäfer writes: “We died the same way many of us lived: in hospital, isolated, stuck indoors, financially struggling, isolated.” As the caption explains: “Each point is illustrated with an empty hospital bed, a silhouette sat in a jar, a closed door, a broken sad and very adorable piggy bank with little coins in it, and nothing.” A subsequent panel features the words: “Every day I see people wishing for things to go back to normal. Back to the way things were. Where we were still suffering and dying.” The inscription accompanies a drawing of crutches lying abandoned on a patch of grass beneath a rainbow and sunshine.⁴

In a guest post for the Disability Visibility Project, Emily Ackerman shares her experience of the pandemic and the recent vaccine distribution process as an often frustrating, anxious, and indignifying collage of phenomena. Ackerman writes of sheltering in place and limiting forays outside of her apartment, but needing to be especially mindful of the unavoidable social non-distancing that she has had to maintain with the dozen or so personal care aides who assist her throughout the day with the tasks of showering, dressing, cooking, and more. Ackerman, who has mobility impairments and uses a wheelchair, has had to deal with the precarious process of needing to quickly and repeatedly fill gaps in this “mega-pod” as aides have become exposed, infected, and sick. Not only has she carried with her the constant worry that she may fall dangerously ill by contracting COVID from an aide, but she feared that she may inadvertently be the cause of aides getting sick from each other.⁵

Ackerman’s state of residence, Pennsylvania, like most states, did not initially prioritize vaccine distribution to people like herself, who had high-risk medical conditions but were under the age of 65. People who worked as (paid or unpaid) caregivers for disabled people living at home have generally been placed even further down on the prioritization rubric. An online vaccine prioritization dashboard maintained jointly by the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities reveals that, as of mid–March 2021, only twenty-six states included disability as a distinct prioritization category, and only thirty-four states had specified some degree of prioritization for at-home caregivers for disabled people.⁶

Moreover, the formal prioritization schedule of states does not necessarily translate, or translate equitably, into practice. Ackerman technically became eligible for the vaccine in mid–January, but spent weeks navigating labyrinthine phone referral chains, making appointments only to have them be canceled by the clinic, enduring the disabled person’s nightmare of being informed that appointments are only available at one day’s notice, witnessing healthy nondisabled colleagues at the university where she works get access to vaccines because they happen to know the right person in the right academic department, and generally feeling rather disempowered.

It should be noted here, as an aside, that the foregoing struggle with bureaucracy—which has become somewhat universal during the pandemic—was also the pre-pandemic norm for disabled people. Being disabled in capitalist society means simultaneously being one’s own social worker, doctor, lawyer, and advocate, all day every day. It means fighting through multiple byzantine city, state, and federal systems in order to obtain medications, doctor appointments, and the basic necessities that sustain one’s life, such as food stamps, housing subsidies, homecare, and assistive technology. The especially bureaucratic process of securing disability transport, which often requires the planning of trips up to a week in advance, makes the prospect of same-day or next-day appointments a particular bane.

At the end of February, Ackerman was finally able to acquire the first dose of the vaccine at a rural clinic, one and a half hour’s drive from her apartment. Though feeling optimistic, Ackerman reflects soberly on the present and future implications of the pandemic and vaccine experience, which cannot simply be “left behind.” This is because large numbers of people will most likely continue to suffer from long-term symptoms and impairments resulting from initial COVID infections (so-called long haulers), and, as Ackerman puts it, “the pandemic won’t depart carrying the crumbling healthcare infrastructure and institutional inequities it exposed.”⁷

Both the absence of a national health system comprehensive enough to accurately determine the number of high-risk individuals and medicine’s historic bias, rooted in white supremacy, which systematically under-diagnoses and underserves BIPOC [Black, Indigenous, and People of Color] individuals, combine to uphold the mistreatment and erasure of disabled Americans. When this is over, there will be no recognition by our government of the scale of our community’s loss, just as there was no true appreciation of the scale of our existence before.⁸

The Scale of Loss

From what information we do have, “the scale of our community’s loss” has indeed been vast. The Centers for Disease Control and Prevention estimates that “Black, Native American, and Hispanic people are dying at three times the rate of white people,” even as these groups are presently being vaccinated at a rate disproportionately lower than whites, and in amounts lower than their overall rate within the national population. A recent report by Public Citizen has found that a lack of health insurance was a factor in the deaths of approximately one-third of the now more than half a million COVID-related deaths in the United States.⁹

The New York Times reports that one-third of COVID deaths in the United States are also linked to the nursing home industry, where infection fatality rates are five times higher than the national average. Considering that less than 1 percent of the total U.S. population reside in nursing homes, it is quite astounding that 34 percent of national COVID deaths have occurred therein. Even when controlled for the elderly subpopulation that comprises the bulk of nursing home residents, the numbers are still disproportionate; only 10 percent of all Americans aged 65 or older reside in nursing homes or long-term care facilities.¹⁰

To disabled people, or those familiar with disability history, the above figures may come as no surprise. There is a long record of disabled people in the United States being subjected to the abuses of eugenics, a set of beliefs used to evaluate and “manipulate natural selection in humankind” through practices and policies such as “sterilization, contraception, segregation, abortion,” and “the so-called euthanasia of the disabled, the non-treatment of neonates.” Eugenics purports to “improve the stock of the national gene pool” by eliminating or reducing the reproduction of those who are deemed inferior, “unfit,” and a drain on society. In the United States, eugenic practices have historically targeted people of color, the disabled, and the poor—exactly the populations most affected by COVID.¹¹

In this light, the mass deaths of disabled and elderly people in nursing homes can be understood as a function of structural eugenics in practice. This is in addition to the more egregious examples seen during the pandemic in which disabled people hospitalized with COVID have been denied ventilators in favor of nondisabled patients, or in which state governments have considered implementing existing crisis protocols that allow for the forcible “reallocation” of the private ventilators of disabled people to nondisabled people.¹²

The simple truth is that the nursing home industry is an institutionalized representation of the callous disregard and neglect with which U.S. capitalism treats elderly and disabled people predominantly living below the poverty line, or, from the standpoint of the system’s maxim of capital accumulation, post-productive and non-productive individuals. The U.S. nursing home industry is a highly profitable sector, siphoning federal funds out of the bed-count bodies of nearly 1.5 million people, 15 percent of whom are younger disabled people. Roughly 70 percent of all nursing homes are run as private, for-profit institutions. Even before the pandemic, during “normal” times, the nursing home industry was rife with inferior health and safety standards (in addition to ubiquitous instances of neglect, abuse, and sexual assault of residents). On the eve of last year’s national pandemic shutdown, an estimated 82 percent of all nursing homes had recently been cited for violations of basic infection-control protocols. Perhaps the foregoing is why then governor of New York state Andrew Cuomo was impressed on—both personally and in the form of corporate political donations—by nursing home and health care facility executives to pass a bill in April 2020 that granted the latter blanket “immunity from any liability, civil or criminal, for any harm or damages alleged to have been sustained as a result of an act or omission in the course of arranging for or providing health care services” related to COVID.¹³

A New York Times opinion piece by Elliot Kukla, a disabled rabbi who has been providing spiritual care to families and residents of San Francisco nursing homes throughout the pandemic, puts a fine point on the crisis. Kukla writes of painful moments he shared with families who watched, remotely, loved ones die of COVID in nursing homes: “It has…been shocking to see all the potential for prevention and harm reduction slip through our fingers.” Now that vaccines are being distributed, Kukla notes that “the rollout is flowing through the familiar tributaries of ableism, ageism, sizeism and racism that have been feeding the ocean of death in this country all along.”

Demonstrating that the New York nursing home industry is not an aberration, Kukla laments that “nursing home administrators have responded to the pandemic by dodging oversight, as opposed to sending out urgent calls for help, cooperation and community solutions. More than half of all states have granted some degree of liability protection to nursing homes during the pandemic.”¹⁴

“Ready to Get Back to Normal”

“Ready to get back to normal,” writes a physician colleague of Kukla’s in a Facebook post on the occasion of their first shot of the COVID vaccine. Kukla winces: “For the most affected populations in this country, ‘normal’ never was. It was a crisis waiting to happen.… I have no desire to ‘get back’ to a time in which we had forgotten how inextricably linked we are to one another.” Echoing a theme expressed by Ackerman, Kukla reflects: “Eventually the vaccines will contain COVID-19. But if the structures that allowed this pandemic to fester remain in place, another global crisis is just around the corner. Until we recognize that we need one another, none of us will be safe.”¹⁵

There has been a persistent dichotomous estrangement throughout U.S. history that has separated disabled people from nondisabled people in a mutually injurious and oppressive dialectic. Nursing homes are just one physical manifestation of this segregation, which has variously included prisons, sanatoria, asylums, and other “total” institutions of confinement. The COVID pandemic and its potential immunization into oblivion—viral mutations and variants notwithstanding—present the possibility of our world becoming either further estranged, individualized, and sundered, or interdependent, solidary, and mutualistic.

“Normal, ho!” people eagerly shout, pointing to the shore of immunity from the deck of this ship that is society, lost at sea for the past year and a half. Much like the metaphoric mountain found in the writings of queer disabled author Eli Clare, representing an edifice of oppression separating the privileged from the disadvantaged, the “return to normal” stands in prospect today as a metaphor for our imminent future:

We hear from the summit that the world is grand from up there, that we live down here at the bottom because we are lazy, stupid, weak, and ugly. We decide to climb that mountain, or make a pact that our children will climb it. The climbing turns out to be unimaginably difficult.… Maybe we get to the summit, but probably not. And the price we pay is huge.

Up there on the mountain, we confront the external forces, the power brokers who benefit so much from the status quo and their privileged position at the very summit. But just as vividly, we come face-to-face with our own bodies, all that we cherish and despise, all that lies embedded there.¹⁶

Notes

1. ↩ Fabiola Cineas, “Black and Latino Communities Are Being Left Behind in the Vaccine Rollout,” Vox, February 24, 2021; “Report Finds a Third of COVID Deaths Tied to Lack of Insurance as Dems Reintroduce Medicare for All,” Democracy Now!, March 17, 2021; Sam Schäfer, “And Now Here We Are,” Disability Visibility Project, March 8, 2021; “More Than One-Third of U.S. Coronavirus Deaths Are Linked to Nursing Homes,” New York Times, June 1, 2021.
2. ↩ Laurie McGinley, Tyler Pager, Hannah Knowles, Adela Suliman, Bryan Pietsch, Brittany Shammas, Annie Linskey, and Lateshia Beachum, “Biden Administration to Offer Vaccine Booster Shots Beginning Sept. 20, Require Vaccinations for Nursing Home Staff,” Washington Post, August 18, 2021.
3. ↩ Schäfer, “And Now Here We Are.”
4. ↩ Schäfer, “And Now Here We Are.”
5. ↩ Emily Ackerman, “My Year of Nothing but Everything,” Disability Visibility Project, March 10, 2021.
6. ↩ Johns Hopkins Disability Health Research Center and Center for Dignity in Healthcare for People with Disabilities, “COVID-19 Vaccine Prioritization Dashboard,” Johns Hopkins Disability Health Research Center, March 17, 2021.
7. ↩ Nicola Davis, “’I’m Still at Half-Capacity’: Long COVID Sufferers Reflect on Brutal Year,” Guardian, January 5, 2021; Ackerman, “My Year of Nothing but Everything.”
8. ↩ Ackerman, “My Year of Nothing but Everything.”
9. ↩ Cineas, “Black and Latino Communities Are Being Left Behind in the Vaccine Rollout”; “Report Finds a Third of COVID Deaths Tied to Lack of Insurance.”
10. ↩ “More Than One-Third of U.S. Coronavirus Deaths Are Linked to Nursing Homes”; “Nursing Home Care,” National Center for Health Statistics, Centers for Disease Control and Prevention, accessed August 10, 2021; “Facts and Statistics About U.S. Nursing Homes,” Nursing Home Abuse Center, accessed August 10, 2021; Nancy Wellman, “Food Preparation and Consumption Habits of Community-Dwelling Populations,” in Providing Healthy and Safe Foods as We Age: Workshop Summary (Washington DC: National Academies Press, 2010).
11. ↩ Alison Bashford and Philippa Levine, eds., The Oxford Handbook of the History of Eugenics (Oxford: Oxford University Press, 2010), 3–4.
12. ↩ Joseph Shapiro, “Oregon Hospitals Didn’t Have Shortages. So Why Were Disabled People Denied Care?,” NPR, December 21, 2020; Ari Ne’eman, “‘I Will Not Apologize for My Needs,’” New York Times, March 23, 2020; Joel Michael Reynolds, Laura Guidry-Grimes, and Katie Savin, “Against Personal Ventilator Reallocation,” Cambridge Quarterly of Healthcare Ethics 30, no. 2 (2021): 272–84.
13. ↩ “Facts and Statistics About U.S. Nursing Homes”; “Nursing Home Care”; Sara Luterman, “It’s Time to Abolish Nursing Homes,” Nation, August 11, 2020; Joel Warner, “Andrew Cuomo Shielded Killer Nursing Home Executives from Justice,” Jacobin, March 2, 2021.
14. ↩ Elliot Kukla, “Where’s the Vaccine for Ableism?,” New York Times, February 4, 2021.
15. ↩ Kukla, “Where’s the Vaccine for Ableism?”
16. ↩ Eli Clare, Exile and Pride: Disability, Queerness, and Liberation (Durham: Duke University Press, 2015), 1–2.