In the United Kingdom, many let out a sigh of relief in April 2020 when it was confirmed by Cabinet Minister Michael Gove, during a weekly press briefing, that the youngest British patient to die of COVID-19, at only five years old, had underlying health conditions. Meanwhile, stateside, The Washington Post proclaimed a couple of months later that “Patients with underlying conditions were 12 times more likely to die of COVID-19 as otherwise healthy people, CDC finds.” While this news may have provided understandable consolation to many, it was of little personal solace for those of us who do live with such underlying health conditions. And it provided a preview of the devaluing of the lives of those with disabilities and pre-existing conditions that would become a recurrent part of the discourse and lived reality for so many during the pandemic.
Ableism is nothing new—in the 1960s, people with disabilities were excluded from public schooling, institutionalized, denied the right to vote, and sometimes sterilized. Those days may be gone, but the pandemic highlighted the continued pervasiveness of this kind of thinking and the myriad ways that a society that individualizes and “others” the experience of health fails the most vulnerable. As researchers and academics Thomas Abrams and David Abbott pointed out in their 2020 research, the lives of people with disabilities were “othered” throughout the past couple of years through a language of “pre-existing threat.”
“In all-too-common rhetoric,” they write, “disability moves from a state of life to a state of death, placed in the way of those who might live more meaningful, more productive, and more worthwhile lives.” The message to those of us with preexisting conditions has been clear: Your death from COVID is simply not as consequential as that of a “healthy” individual. This has been evident in everything from the rhetoric of public health authorities, issuing guidelines that often speak only to the reality of health individuals, to the widespread reluctance among so many to take up even the smallest measures to protect the health of others, such as masking.
For people with chronic health conditions or disabilities, small reminders of our relative unimportance crept up in myriad ways. In my case, it included a communication with my provincial representative. In response to the issuance of vaccine passports in Québec for certain non-essential activities, the small leftist party that represents my riding, though tacitly offering its support, also advanced rampant criticism of its implementation that appeared to cater to anti-vaccine sentiment. When I wrote to my representative to express my belief that the party’s rhetoric failed to consider those living at increased risk of COVID-19, I was reminded that they were not actually opposed to the passport. But only because they wanted to ensure we did not experience another lockdown, which would affect fragile groups, which included, in the party’s estimation, “the young, the elderly, and the unhoused.” No mention was made of the fragility, during a pandemic, of those with chronic illness or disability. Meanwhile, my alma mater, McGill University, which refused to institute a vaccine mandate, also sent a memo to faculty stating that “concerns about relatives who might be at heightened risk of exposure to COVID-19, including those living under the same roof” were not valid reasons for refusing to teach in class.
The pushback against mandates has not only been a clear part of right-wing rhetoric, but also of the “anti-authoritarian” and “civil liberties” left, sometimes in response to those who have, thankfully, come out to assert the positive right of protection for those with chronic illness through vaccine mandates, including groups like the ACLU. Although some fears may be worth considering, these critiques invariably fail to consider the reality of those with compromised immune systems.
It is not surprising that this kind of response to a global health crisis has taken place in the context of health-care systems, most particularly in the United States, but across developed countries, that promote an individualistic view of health care, as well as the marketization and commodification of its provision. This view, which obscures the manner in which our health is interconnected, as well as the social determinants of health, only makes it that much harder to come together to face existential challenges to our wellbeing, whether in the form of an airborne global pandemic, the shared health effects of climate change, or even tackling the effects of toxins in our food or industrial air pollution. It also means that, although most of us will access the health-care system at one time or another, we still see unique health challenges as solely the problem of the individual experiencing them.
As Ed Yong recently lamented in an important piece in The Atlantic that examined the depoliticization and medicalization of the practice of public health, “[P]ublic health [after WWII] began to treat people as if they lived in a social vacuum. Epidemiologists now searched for ‘risk factors,’ such as inactivity and alcohol consumption, that made individuals more vulnerable to disease and designed health-promotion campaigns that exhorted people to change their behaviors, tying health to will power in a way that persists today.” This view was made clear as early as 1979 when the Surgeon General released its report “Healthy People,” which stated that: “[P]erhaps as much as half of US morality rate in 1976 was due to unhealthy behavior or lifestyle.” And while former Vice President Mike Pence unsurprisingly spoke of “bringing freedom and individual responsibility back to American health care,” it is worth noting that even President Obama once quipped that “we’ve got to have the American people doing something about their own care.”
It is little wonder, then, that in states like Indiana, to receive full Medicaid benefits, patients must contribute monthly to a “personal wellness and responsibility account.” If they fail to do so, they risk having benefits cut or losing all coverage for a period of months. In 2007, West Virginia began asking Medicaid recipients to sign a personal-responsibility agreement. Those who failed to sign or to adhere to all its requirements saw benefits cut. Less than 15 percent of those eligible signed, and 90 percent of children had their benefits restricted. Seeing no improvements to health stemming from the requirement, the plan was scrapped in 2010.
“Seeing poor health as a matter of personal responsibility rather than societal rot became natural,” Yong also noted in his Atlantic piece. Despite pushback against the biomedical, individualistic view of health, “The legacy of the past century has yet to release its hold on public health.” The ways in which poor health clearly interacts with issues of poverty and racism are too often ignored, though their effects have also been made clear during the pandemic. In a CDC study from June of 2020, it was found that an estimated 41 percent of U.S. adults had delayed or avoided medical care since the beginning of the pandemic, but avoidance of urgent or emergency care was most likely among caregivers, persons with underlying conditions, and persons with disabilities, as well as among Black, Hispanic, and young adults.
Meanwhile, although media has sometimes reported on the “nonessential” care and health services that have been delayed while doctors are treating COVID patients, sociologist Andréa Becker noted in a report for Vox that using the term “nonessential” to refer to medical treatments has devalued care that disproportionately affects women, LGBTQ people, and the chronically ill. For example, these “nonessential” surgeries have included multiple reports of delayed kidney transplants.
It is worth mentioning the fact that one group heavily at risk due to COVID-19 is those with end-stage renal disease. Dialysis patients are about four times more likely to die of COVID-19 than the general population. African Americans make up only 13 percent of the U.S. population, yet they constitute 35 percent of those living with kidney failure in the United States. Hispanics are also about 1.3 times more likely to be diagnosed with kidney disease than non-Hispanics. And over the past decades, dialysis in the United States has been taken over, more and more, by large for-profit monopolies. During this time, multiple reports have chronicled the extent to which patient care, health, survival, and likelihood of receiving a life-saving transplant have dropped after a dialysis center was acquired by a for-profit chain.
In Canada, where I live, about 80 percent of COVID deaths during the first wave took place in long-term, for-profit care homes. In fact, the first person to die of COVID-19 in Canada was a man in his 80s residing at the Lynn Valley Care Center in North Vancouver. Just under half of all long-term care facilities are both private and for-profit. Professor Pat Armstrong, a professor of sociology at York University and a fellow of the Royal Society of Canada, is one of Canada’s top thinkers on long-term care. “We know from the research that for-profits tend to have lower staffing levels. They tend to have more transfers to hospitals. They tend to have more bed ulcers,” she explained to the CBC. The increased use of for-profit care has led to a deterioration in labor conditions. This has meant, among other things, care workers employed simultaneously at multiple sites through part-time work, thus carrying the virus with them from one home to another.
Canada has faced severe criticism in recent years for its lack of adequate care for those with disabilities, particularly its lack of provision of community care. Before the onset of the pandemic, in 2019, the United Nations denounced Canada for “significant shortcoming” in fulfilling its obligations under the Convention on the Rights of Persons with Disabilities, and said that the country’s health-care system “gives no other alternatives to persons with disabilities” other than “living in institutions and other residential settings.” In February, the United Nations Special Rapporteur on persons with disabilities sent the Canadian government a letter identifying the human rights violations likely to come from the expansion of medical assistance in dying for those whose death is “not foreseeable” without a corresponding increase in support.
that we all have an interest
in a health-care system that recognizes the intrinsic inter- connectedness of our wellbeing.
A recent episode of the podcast “Canadaland” chronicled the experience of a 50-year-old woman in British Columbia who suffers from mycological encephalitis and was four weeks away from running out of the money she needs to stay alive, as her experimental treatments are not covered by Canadian Medicare. To stay afloat, she was relying on provincial disability in British Columbia, which provides only $1,358 per month, less than the country’s CERB payments of $2,000, which were provided monthly to those who lost work during the pandemic (sadly this monthly payment in BC is higher than in most provinces). In Canada, more than one third of people with disabilities are living below the poverty line, according to recent statistics. Ramona Coelho, an Ontario-based physician who spoke during a committee meeting on the bill to expand assisted dying, spoke of patients who, during the pandemic, lacked housing, access to medications, and other supports which led to many death wishes being uttered that otherwise most likely wouldn’t have been. In the United States, disability benefits are equally meager, even though, according to the CDC, one in four Americans lives with some sort of disability.
In an episode perhaps most reminiscent of eugenic sentiment toward the ill or disabled, the HHS’s Office for Civil Rights was forced to take up a case, in March 2020, against the states of Alabama and Washington, which had created lists of health conditions and disabilities for which mechanical ventilator support should not be offered. The United States, of course, is also sorely lacking in provision of long-term care for the chronically ill and elderly. Research from the Commonwealth Fund found that older adults in the United States were more likely to have problems accessing care during the pandemic than adults in any other “developed nation” and older adults living with chronic illness were also more likely to see medical appointments canceled. The United States joined low performers Canada, Australia, and the UK in not providing adequate home care, with 23 percent of adults who need this help not receiving it. As Dr. Chiara Lepora, an Italian doctor with Doctors Without Borders who was deployed back to her home country during the pandemic, told The New York Times in November, while speaking about the high death rate in the country’s Lombardy region where services have been highly privatized since the 1990s, “If you consider profit to be the endgame of health care instead of health, some people are going to be left out. The pandemic exposes all of those weaknesses.”
Yet in highlighting these fissures in our existing health-care systems, there may be an opening for change. Operation Warp Speed, which helped ensure the speedy delivery of vaccinations, was notably a public-private partnership that relied heavily on public funding for the development of pharmaceuticals. (Unfortunately, this has not stopped the company that benefited so dramatically from public investments from being part of creating, as WHO head Dr. Tedros Adhanom has called it, a “vaccine apartheid.”)
President Biden’s Build Back Better bill (depending on what remains of its original promise when it is finally passed) could, as epidemiologist Gregg Gonsalves has stated, also constitute “a public health bill addressing multiple social determinants of health.” Americans with disabilities and seniors stand to benefit greatly from a major expansion in Medicaid home care, among other expansions in Medicaid and Medicare. As Judy Heumann, who co-founded the World Institute on Disability, recently told The New York Times, “Maybe one of the outcomes of Covid will be that we’ll make the reforms necessary to allow people to remain in their homes and communities and not remain in these segregated places where over and over again we see atrocities,” as we saw in elder homes during the pandemic.
The pandemic has also illustrated, as disability rights activist Ari Ne’eman wrote recently in The New York Times, to what extent “disability rights are of near-universal relevance.” One example, as Ne’eman noted, is the fact that “Those adults who couldn’t work from home began each morning with a complex calculus of risk and worry familiar to many chronically ill people with compromised immune systems.” In addition, as Colin Killick, executive director for the Disability Policy Consortium told Ne’eman, “People with disabilities found that accommodations they were denied for decades suddenly became universally available during the pandemic.” In studies released this spring, it was found that approximately 40 percent of workers would quit their jobs if forced to return to work in an office. Meanwhile, disability activists had spent years fighting for these same accommodations.
In fact, people with disabilities and chronic illness have fought heroically many times for legislation that has had near universal benefit. Inspired by the civil rights movement of the 1960s, Americans with disabilities began mounting protests throughout the 1970s, ensuring the passage of important pieces of legislation that asserted the right of those with disabilities to live with dignity but have also been interpreted to provide rights more broadly. In April 1977, as part of this effort, activists engaged in the longest peaceful occupation of a federal building in U.S. history in San Francisco. The disability movement only grew stronger throughout the 1980s, culminating in the landmark Americans with Disabilities Act of 1990.
In the mid-1980s, thousands of mostly young men, many themselves ill with HIV/AIDS, came together to create the AIDS Coalition to Unleash Power (ACT UP), galvanizing upon the pain, fear, and loss of their own personal experiences to create one of the most successful grassroots activist movements in recent history. As David France, author of How to Survive a Plague, explained, “ACT Up’s ethos was that they had united in anger . . . They were no longer invisible sufferers of a disease. They were terrifying suffers of a disease.” More recently, this same kind of anger galvanized activists with disabilities and patients groups in Washington, D.C. in 2017 to fight Republican plans to repeal essential parts of the Affordable Care Act, including proposed cuts to Medicaid. The media memorably showcased pictures of activists in wheelchairs being dragged, defiantly, away from the Capitol.
As Ne’eman explained, COVID-19 has, hopefully, created another “opportunity . . . to frame disability advocacy in the language of shared social and economic liberties we should all protect, for reasons of self-interest as much as abstract notions of equity.” The pandemic has made clear the opportunity for those with “pre-existing conditions” to deploy the adversity faced during this time and tap into the kind of righteous anger that has always been a necessary catalyst for lasting social change. But it shouldn’t be up to the most vulnerable alone. The pandemic has shown that we all have an interest in helping to create a health-care system, and a discourse around health, that recognizes the intrinsic interconnectedness of our wellbeing.