Autopsy of the Living: Elderhood, Race, and Biocitizenship in the Time of Coronavirus

Autopsy of the Living

elderhood, race, and biocitizenship in the time of coronavirus

Jennifer Lum

ABSTRACT This article reflects upon a story that Jiayang Fan, a staff writer for the New Yorker, shared during the first days of the coronavirus pandemic lockdown. In spring 2020, Fan pleaded for help to the Twitter community: her mother, a 68-yearold who suffered from amyotrophic lateral sclerosis (ALS), was trapped at the Henry J. Carter Specialty Hospital in New York City, amid a COVID-19 outbreak. Even worse, her mother’s aide, a Fujianese immigrant, had been forcibly evacuated by the hospital’s police due to noncompliance with lockdown orders, and Fan knew that her mother couldn’t survive without her. Using Eric Klinenberg’s concept of the “social autopsy,” this article explores the historical, social, structural, and political underpinnings of Fan’s family’s ordeal and argues that Fan’s story underscores the harmful legacies of immigration measures and austerity politics unfolding in one of the world’s wealthiest cities. Fan’s turn to social media networks for help reflects a pattern of biological citizenship emerging in the COVID-19 era, which has mobilized the disabled, elder care, and racial justice communities in a time of pervasive insecurity.

It was the racial slur that caught my attention. All of the familiar sensations awakened: the surge of nausea, the racing heart, the burning ears, the seizure in my throat, and the rage in my stomach. For a second, it transported me back to the overcast February day in elementary school, when two 10-year-old boys named Chad and Brandon approached me outside the school cafeteria and sud-

Department of Rhetoric, University of California–Berkeley. Email: jmlum011080@berkeley.edu.

Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 353–369. © 2021 by Johns Hopkins University Press

denly cackled at me in unison, making a slanted eye gesture with their fingers, and mocking a language they presumed I spoke. Or perhaps they didn’t, but it didn’t matter. My Asian features were all that mattered.

This time, however, the slur had been directed not at me, but at Jiayang Fan (2020), a staff writer for the New Yorker, who posted on Twitter about the incident immediately after it happened. On March 18, 2020, my brother had sent me a screenshot of her tweet. She had been taking the garbage out from her apartment in New York City, when an older white man snarled at her: “F—ing Chinese!” In a moment of confusion, she had stared at the man incredulously, when he doubled down: “Yeah, you, you Chinese b—!”

Not being keen on social media, I normally would have sent my brother a

“disgusted” emoji in reply and moved on with my evening. Even so, it had been anything but an ordinary week. Having been abruptly and indefinitely sent home, due to the COVID-19 pandemic, from the classes I had been teaching at UC Berkeley, I’d found myself with more unscheduled time on my hands than I had wanted. I’d pored over several articles documenting a surge in anti-Asian hate crimes stemming from resentment over the coronavirus, not only in the United States, but around the world. Feeling a different kind of vulnerability than I ever had before, I decided to follow Fan on Twitter, at which point she shared a story that has become the point of departure for this essay.

On March 28, 2020, Fan pleaded for help from the Twitter community. Following New York City’s transition to lockdown, she had been barred from visiting her mother, a 68-year-old woman who suffers from amyotrophic lateral sclerosis (ALS), at the Henry J. Carter Specialty Hospital in Manhattan. Fan was deeply distraught, as her mother was on a ventilator and barely clinging to life, under the care of a rotation of health aides who tended to her 24 hours per day. Even worse, Fan knew that residents in long-term care facilities were especially vulnerable to the coronavirus, and she feared her mother was a sitting duck. Feeling helpless, Fan implored her nearly 60,000 followers on Twitter for donations in order to purchase food and supplies for the hospital’s roughly 400 staff members. In early April, Fan learned that some patients at Carter had contracted COVID-19, and she was subsequently told that all visitors would need to leave the building indefinitely. On April 9, Fan tweeted that security staff had seized and expelled her mother’s aide from the hospital, due to noncompliance with lockdown orders. Seemingly miraculously, with the help of two New York state politicians and a prominent Twitter personality, Fan was able to negotiate the aide’s return to her mother’s bedside by the following day.

While following Fan’s story I’ve been left with the haunting impression that Fan’s dogged advocacy has done nothing short of saving her mother’s life. Fan had known that her mother couldn’t survive without her aide’s fine-tuned attention to her life-support technologies, her Chinese language skills, and her familiarity with her mother’s patterns of communication. The pandemic confronted

Fan with her mother’s extreme vulnerability, which was punctuated by the violence of her mother’s aide’s evacuation by the hospital’s security team. I am also fascinated with the actions Fan took, and particularly her outreach on social media, as her mother’s life hung in the balance. Had the Twitter community not intervened, the outcome of the events might have been much different.

These observations have led me to wonder: what have Fan’s family’s trials revealed about the deep fragility of life in the face of the COVID-19, particularly among Asians, working-class laborers, and elderly people in New York City? How might we historicize such glaring vulnerability, and how might we begin to parse the layers of trauma and violence that have unfolded at the Carter Specialty Hospital, which, on its face, is a space of safety and healing? Furthermore, what have Fan’s tactics shown us about the strategies and directions of health-based advocacy and activism in the post-COVID-19 era?

In what follows, I explore some of the historical, social, and political conditions that have brought about such precarity in the day-to-day lives of some living in New York City. Turning to Eric Klinenberg’s (2001) notion of the “social autopsy,” I argue that Fan’s family’s story is symptomatic of the fallout from US immigration policies and from austerity measures that have stratified and marginalized communities of color since the 1970s. I go on to suggest that Fan’s strategies of advocacy for her ALS-stricken mother reflect the history, as well as the emergent directions of health-care activism in the US, in the time of COVID-19.

A History of a Life Near Death

In order to make sense of Fan’s family’s ordeals during lockdown in New York City, it is important to consider Fan and her mother’s life history together. The pair came to the US from Chongqing, China, in 1992. Fan was seven years old at the time. Her mother, Yali Cong, had worked as a physician in the Chinese army. The two had been living on their own in Chongqing since 1986, when Fan’s father departed to study biology at Harvard University. On July 4, 1992, Fan and her mother landed at JFK Airport outside New York City, carrying suitcases stuffed with bedding, cooking items, and a stethoscope. They joined Fan’s father, who by then had been hired at Yale University, in a tiny studio apartment in New Haven. The reunion, however, didn’t last long. Fan’s father deserted the pair for another woman, leaving Fan and her mother alone to face eviction. Cong had $200 to her name, and she spoke little English.

As circumstances grew desperate, a friend brought Cong to the local library, where she browsed employment ads and secured a position as a live-in housekeeper for a family in nearby Greenwich. At the time, in the mid-1990s, Greenwich was one of the wealthiest places in the country, and Cong believed that the local schools would offer Fan a pathway to elite higher education. Cong soon discovered that that her employers’ needs were fickle, and that every few years

she would need to scour the local advertisements once more for jobs close to Fan’s schools. Such perennial anxiety, Fan believes, led her mother to develop a stubborn facial rash, along with a host of other chronic body ailments.

In the fall of 2011, at the age of 59, Cong was diagnosed with ALS. Over the next three years, she endured a gauntlet of emergency surgeries, ICU visits, and stints in nursing homes. By 2014, Cong could no longer breathe without a ventilator and was moved to Henry J. Carter Specialty Hospital, a long-term acute care facility in Manhattan, which is 30 miles from Greenwich. Recognizing that her mother required more assistance than Carter could provide, Fan stayed by her side, turning her every two hours to avoid bedsores, suctioning the mucous from her throat every half-hour, and designing a communication system in which her mother blinked at letters on an alphabet chart. Torn by her work obligations, Fan eventually hired a rotation of Fujianese health-care aides to look after her mother 24 hours per day.

In late March 2020, as New York City unfurled its lockdown policy in response to the coronavirus, Cong had two regular health aides, Ying and Zhou. Upon learning that Carter planned to ban all visitors, Fan called Zhou and told her to stay home in Queens, two hours away, where she lived with her son’s family and in-laws. She then implored Ying, whose shift was ending, to stay as long as possible with her mother. Barred from visiting her mother, Fan documented her predicament on Twitter and called for donations to purchase food for Carter’s employees, in order to support and stay connected to the staff. On April 9, Fan absorbed a double blow: she was briefed about a COVID-19 outbreak at Carter, hours before security guards dragged Ying out of the hospital so abruptly that she didn’t have time to put on her shoes. Fan responded by tweeting at Mitchell Katz, the president of New York City Health and Hospitals, and publicly pleading for his help. That night, three people contacted her: Yuh Line-Niou, a New York assemblywoman whose district includes Manhattan’s Chinatown; Brian Benjamin, a state senator whose district includes Harlem, where Carter is located; and a prominent Twitter personality who knew Katz personally and offered to contact him on Fan’s behalf. Early the next morning, Fan received a phone call from David Weinstein, the medical director and head of public relations at Carter. To her relief, Weinstein informed her that Ying would be authorized to return to her mother’s bedside, effective immediately.

Fan’s family’s story is undeniably one of long-term insecurity, combined with dogged perseverance. Given the severity of Cong’s bout with ALS, as well as her advancing age, it would certainly be possible to read her decline as an inevitable trajectory toward death, and to interpret the clash with hospital police as an unfortunate byproduct of the fallout from the COVID-19 pandemic. In light of the family’s decades-long and multilayered journey, however, I am interested in exploring some of the historical, social, and structural conditions that brought about such extreme vulnerability.

Eric Klinenberg’s (2001) concept of the “social autopsy” serves as a useful tool for making sense of the trauma Fan’s family has endured. The social autopsy enables a political sociology of death and dying, in order to reveal “a structure of urban marginality and insecurity that is always present but otherwise difficult to perceive” (123). The social autopsy peers beyond the organic profile of the dead or dying body, while turning a critical eye to the intersectional politics of illness and vulnerability within which the body is situated. In what follows, I use the concept of the social autopsy to explore some of the structural pathologies that Cong’s predicament during the COVID-19 pandemic lays bare. I focus on the lingering residue of 20th-century US immigration policies and austerity politics, as well as the uneven geographies of race, opportunity, health, and wealth distribution that such politics have engendered.

A Model of Minor(ity) Insecurity

Although many aspects of Fan’s family’s story are rather poignant, I am especially struck by the bond of mutual reliance that Fan and her mother have shared since their arrival in the US in the early 1990s, as they have managed to survive on modest means while weathering one crisis after another. This bond has likely saved Cong’s life since the onset of ALS symptoms in the early 2010s, and in particularly dramatic fashion amid COVID-19-related lockdown conditions that have taken hold since mid-March 2020. As remarkable as Fan and her mother’s life together has been, their story of immigration, and of scraping by through social, financial, and health-related insecurity, is far from uncommon among elderly Asians and their families living in New York City.

Since the early 2000s, Asians over the age of 65, like Cong, have represented the fastest-growing population of aging immigrants in New York City, growing by at least 68% between 2000 and 2010. This trend has accelerated since the 1970s, the decade before Fan’s father relocated from Chongqing to Boston. For the past four decades, Asian immigration to the US has outpaced the growth rates among all other ethnic groups (González-Rivera 2013). Within a broader historical context, this dramatic increase in Asian immigration to the US stems from the Immigration and Nationality Act (INA) of 1965, which ended northwestern European and Germanic bias in immigration policy. By removing race-based quotas restricting newcomers from Southern and Eastern Europe, Africa, and Asia to the US, the INA ushered in a wave of immigrants from mainland China, India, Korea, the Philippines, and Vietnam (Lobo and Salvo 1998). Between 1964 and 1994, the period during which Fan’s family came to the US, legal immigration from Asia rose from 21,000 to 292,000 arrivals per year. By the 2010s, the decade during which Cong developed severe symptoms of ALS, a large percentage of these immigrants, like Cong, had reached the age of 65 or older.

While Cong has survived in the US, and successfully raised Fan on modest means, the pair’s ordeal at Carter Specialty Hospital underscores the lack of re-

sources at their disposal to allow Cong to navigate her trials with ALS in the comfort of her own home. Although Cong is able to pay for long-term care at Carter with the help of Medicaid and Medicare, elderly Asian immigrants in New York City are far more likely to fall below the poverty line than are seniors from other ethnic groups. As of 2013, the four fastest-growing groups of immigrant seniors, which included Chinese, Indian, Caribbean, and Koreans, all suffered from poverty rates of at least 25% (González-Rivera 2013). These rates are driven by multiple factors. To begin with, these groups are much less likely than native-born seniors to benefit from substantial Social Security–based income, because they have earned less over the course of their working lives. In addition, people from these immigrant groups are more likely to have suffered from long-term, limited earning power, as well as social isolation, due to their limited English skills. According to a study by the Center for an Urban Future, 94% of elderly Korean immigrants, as well as 92% of elderly Chinese immigrants, like Cong, spoke English “less than very well” (González-Rivera 2013, 7). This combined lack of language skills and earning power, as well as social isolation, has resulted in comparatively high levels of depression and even suicide among older Asian immigrants, according to Jo-Ann Yoo, the managing director of community services at the Asian American Federation in New York City (González-Rivera 2013). It is within this context, not surprisingly, that Fan has mused that her mother’s chronic physical ailments reflect her stressful life course.

It is important to point out that this snapshot of poverty and hardship among aging Asian immigrants flies in the face of the “model minority myth,” which has cast Asians as upwardly mobile and socioeconomically advantaged compared to other minority groups in the US, particularly African and Latinx Americans. Asians’ success, the story goes, may be attributed to traditional Confucian beliefs, a culture that fosters a strong individual work ethic and robust family values (Chou and Feagin 2015; Hartlep 2013; Wu 2015). Although a thorough interrogation of the model minority myth is beyond the scope of this paper, it is critical to emphasize that this narrative obscures the politics and ongoing ramifications of the INA. Although the INA increased the overall influx of immigrants to the US, it was structured according to a preference system that favored relatives and children of US citizens and permanent residents, highly skilled professionals, and refugees. Strikingly, between 1971 and 1994, 34.3% of Asian immigrants were classified as highly skilled professionals, compared to 22.7% of immigrants overall (Lobo and Salvo 1998). This policy of “hyper-selectivity” has enabled the earning power of Asian immigrants and has positively influenced the educational trajectories and long-term outcomes among subsequent generations of Asian-Americans (Zhou and Lee 2017).

Against this backdrop, Fan’s family’s story illustrates the uneven legacy of the INA and its scattered distribution of privilege and insecurity. On the one hand, Fan and her mother were able to enter the US through the policy of family re-

unification, which promised an upwardly mobile lifestyle, driven by Fan’s father’s work, institutional affiliations, and socioeconomic status. On the other hand, the six-year gap (1986–1992) between Fan’s father’s arrival in the US and Fan and her mother’s migration trajectory illustrates the bureaucratic complexities of the US immigration system, which has been designed to cap the influx of migrants from single countries. As of 2011, the average wait time for a spouse or a minor child of a legal permanent resident was six years. More broadly, the system has disproportionately affected those hailing from countries with large numbers of potential migrants, including Mexico, China, India, and the Philippines (Landale, Thomas, and Van Hook 2011). As Fan’s family’s struggles illustrate, this waiting period has often strained migrant families. The reunification process is fraught with insecurity at multiple stages, including high rates of illegal immigration on the part of those who have acquired visas but must wait to enter the US due to the backlog; children who, while waiting, age out of the categories for which they have been approved; and ongoing interpersonal strain, to which Fan’s family can attest, once the families have been reunited after a years-long separation and must negotiate their new lives together.

After Fan’s father deserted the family, Fan and her mother were left to face eviction and ongoing social and financial precarity as a single-parent household. In this respect, Fan and her mother’s story resonates more closely with the migration stories of Southeast Asian refugees who were granted asylum under the INA than it does with the upwardly mobile trajectories of those Asians, like Fan’s father, who benefitted from the immigration system’s practice of hyper-selectivity. A larger share of Southeast Asian immigrants, including Cambodian, Laotian, Hmong, and Vietnamese, live in nontraditional family structures compared to other Asian immigrants, due to the deaths of family members amid conditions of wartime and hardships faced at refugee camps (Landale, Thomas, and Van Hook 2011). The combination of single-parent households, as well as relatively lower rates of professional skill and education among Southeast Asian refugees, has resulted in higher rates of poverty in relation to other Asian immigrants and has thrown into relief the socioeconomic disparities among Asians as an ethnic group that the model minority myth obfuscates.

Austerity, COVID-19, and the Politics of Vulnerability

Although the INA increased the flow of immigrants into the US, Fan and her mother arrived in the country in 1992, when austerity politics had already weakened the US government’s support for new arrivals. Reagan-era tax cuts and disinvestment in the social safety net set the stage for a host of welfare and immigration reforms in the mid-1990s, right after Fan’s family dissolved. In 1996, Congress passed the Welfare Reform Act, which reduced federal spending, required

able-bodied persons receiving government assistance to work, and eliminated the Aid to Families with Dependent Children (AFDC) entitlement program. In addition, Congress passed the Illegal Immigration Reform and Immigrant Responsibility Act. Together, these initiatives reduced the eligibility of legal immigrants, as well as refugees, for most need-based social services. For instance, legal immigrants like Fan and her mother became ineligible for food stamps, and refugees became eligible for food stamps and supplemental security income (SSI) for only their first five years of residence. Illegal immigrants remained almost entirely ineligible for federal benefits (Huber and Espenshade 1997).

Although the safety net for immigrants was largely dismantled by Congress in the 1990s, the austerity politics driving such developments had begun to remake New York City decades earlier. During the 1970s, amid oil shocks, inflation, and global financial collapse, the city had garnered criticism for its Great Society–era investment in the public sector, including its robust social services, its free public university, and its elaborate network of municipal hospitals (Phillips-Fein 2017). Following the city’s financial crisis of 1975, administrators eviscerated such provisions by withdrawing and reallocating funds earmarked for centers for child care and early childhood education, libraries, parks, schools, playgrounds, hospitals, and police and fire departments. By 1978, the public workforce had shrunk by nearly 70,000, with layoffs disproportionately impacting Black, Latinx, and female workers, who often had less seniority and thus less protection (Phillips-Fein 2017). During the 1980s, policymakers continued to gut the social safety net, prioritizing the growth of free enterprise, while the 1990s brought further attacks on labor unions, the embrace of “workfare” programs for poor women, and the acceleration of broken-windows policing under Mayor Rudy Giuliani. Economic disparities in the city festered throughout the 2000s under the Bloomberg administration. By 2013, 21% of New Yorkers, or nearly 1.7 million people, lived below the poverty line, while the average household in the top 5% earned 88 times as much as a household in the bottom 20% (Phillips-Fein 2017).

The COVID-19 pandemic of 2020 has laid bare the impact of austerity politics upon the city’s public infrastructure and the precarious conditions of living that working-class laborers, as well as the elderly, have consequently faced. After losing thousands of hospital jobs during the 1990s, for example, New York City’s public hospital system sustained another round of cuts to jobs, mental health programs in schools, pharmacies, and community clinics in 2009 (Hartecollis 2009), two years before Fan’s mother was diagnosed with ALS. The cuts were part of a long-term trend in budget reductions and insurance overhauls, as the city reduced its number of licensed hospital beds from 73,931 in 2000 to 53,000 in 2020 (Campanile et al. 2020). It is within this context that Carter Specialty Hospital was the only long-term acute care facility that would accept Fan’s mother in 2014, and that Fan needed to stay by her bedside for a lengthy period of time after her admission, due to inadequate staffing.

Even as the pandemic had begun to ravage New York City, in mid-March 2020 a panel convened by Gov. Andrew Cuomo announced plans to cut the state’s Medicaid program by identifying $2.5 billion in potential savings. The proposals included $400 million in cuts to hospitals, even as beds and ventilators grew glaringly scarce and the state’s death toll was on its way to the nearly 35,000 fatalities registered by October 2020. Many of the hospitals that stood to be compromised by the cuts were so-called safety-net hospitals, which largely served uninsured or undocumented residents. It is important to point out that this population faced—and continues to face—heightened susceptibility to the coronavirus due to cramped living and working conditions, and an incapacity to practice social distancing (Ferre-Sadumi and McKinley 2020).

Throughout New York State, moreover, the pandemic has disproportionately impacted communities of color, as well as the disabled and elderly populations. Fatality rates attributed to the coronavirus have been markedly higher among Black and Latinx residents. By the end of March 2020, it had been estimated that Black (non-Hispanic) adults were 5.38 times more likely to die of COVID-19 symptoms than White (non-Hispanic) adults, whereas Latinx adults were 3.48 times more likely (Holtgrave et al. 2020). These disparities have been attributed to “upstream” factors unevenly distributed along lines of race and wealth accumulation, including housing and food insecurity, high housing density, a higher percentage of front-line occupational work, and a heightened reliance upon public transportation, all of which have made social distancing difficult, if not entirely impractical. It has also been pointed out that poor clinical outcomes within the Black community in response to COVID-19 have been exacerbated by underlying health conditions such as diabetes, coronary disease, and chronic lung disease, all of which have been linked to environmental stressors and structural inequalities.

In addition, nearly 6,700 residents in New York State’s nursing homes and long-term care facilities, like Fan’s mother, had died of symptoms of COVID-19 as of October 2020, which represented 20% of the state’s overall death toll. Nationwide, more than 84,000 coronavirus-related deaths have occurred among patients in such institutions, and these fatalities have comprised 38% of the overall death toll in the US as of October 2020. COVID-19 has been especially lethal within these facilities due to the high numbers of people over the age of 60 living there, the widespread prevalence of underlying health conditions that render this population more vulnerable, the congregate living arrangements, and the volume and frequency of workers moving between rooms (New York Times 2020). New York State’s death toll across such institutions has spurred criticism of Gov. Cuomo’s late-March order, amid ongoing proposals to cut Medicaid, for nursing homes to accept coronavirus patients from hospitals, at a time when hospital beds were being overwhelmed with new admissions. In response, the State Department of Health released a report that instead blamed 37,500 nursing

home workers, who had become infected since mid-March, for transmitting the virus to patients (Ferre-Sadumi and Harris 2020).

Bracketing the Cuomo administration’s dubious decisions, the Health Department’s report calls attention to the tenuous conditions of life and labor, in the midst of the pandemic, for health-care workers such as Ying and Zhou, Fan’s mother’s Fujianese aides. It is remarkable that Zhou normally traveled two hours one-way to get Carter Hospital from her multi-generational and multi-family home in Queens, which she shared with her son and his in-laws. Home to one of the most ethnically diverse, as well as income-stratified populations in the city, Queens has suffered one of the highest rates of infection among all of New York City’s boroughs (Holpuch 2020). Zhou’s and Ying’s stories also highlight the relatively high numbers of Asian American and Pacific Islander (AAPI) health-care workers not only in New York, but across the US, who are providing “essential labor” and are at higher risk for infection. In New York State in 2018, there were 134,824 AAPI health-care workers, who made up 11.6% of the health-care workforce; nationwide, the figures were 1.4 million health-care workers, or 8.5% of the health-care workforce, even though AAPI’s represented only 6.8% of the US population (New American Economy 2020). Almost 1 million of these AAPI workers were immigrants, like Zhou and Ying.

Zhou’s work schedule, which includes four hours of round-trip travel per day in order to care for Fan’s mother at Carter, also provides a glimpse into the lives of other working-class Asians in the time of coronavirus. New York State is home to the second-highest number of Asians working in the accommodation and service sectors in the nation (Frauenfelder 2016). Along with health-care workers, these employment sectors include transit workers, restaurant owners, food service workers and chain suppliers, grocers, dry-cleaners, and personal appearance workers, all of whom are especially vulnerable to changes in both health and economic status amid the pandemic (Kwon 2020). Although the overall fatality rate due to COVID-19 in New York City has been reportedly lower among Asians than among other ethnic groups, including Whites, this disparity may reflect a lack of widespread testing within predominantly Asian communities (Mays and Newman 2020; Pan 2020). Meanwhile, the number of unemployment claims spiked to 147,000 among self-identified Asian workers in New York City during April 2020, compared to 2,100 in April 2019, which was the largest increase among all ethnic groups. Although this plunge in employment may reflect early social distancing practices within Asian communities prior to citywide shelter-in-place regulations, another important factor is the high concentration of Asians in the food and service industries, and the xenophobia that has disproportionately affected Asian businesses (Liao 2020).

These structural and racial insecurities constitute the backdrop against which Ying found herself the target of an evacuation raid at Carter in April 2020, for failure to comply with the hospital’s lockdown orders banning all visitors. What is

striking about this incident is the violence exacted upon Ying’s body in the name of public safety, as security staff burst into Cong’s hospital room and dragged Ying out of the building against her will, while Fan pleaded with the officers over the phone to no avail. The brutality of the encounter recalls the history and politics of disease containment leading up to and beyond the passage of the Chinese Exclusion Act of 1882, which remains the only US law ever passed that has banned immigrants of an entire ethnicity or nationality. During the last quarter of the 19th century, public administrators and medical experts in California and Hawaii rationalized the failure of their sanitary programs by tracing disease outbreaks to Chinese laborers and their living conditions. Beginning in the 1860s, health officials in San Francisco and Honolulu cast the Chinese as unhygienic, unsanitary, noncompliant with public health regulations, and consequently a threat to the health and welfare of the nation. Well into the 1900s, this narrative legitimized ongoing raids, poisoning, and fumigation practices throughout Chinese communities to ferret out lepers and other presumed disease-carriers. In addition, policymakers imposed interstate travel restrictions, as well as detention and quarantine protocols (Trauner 1978).

Ying’s forcible expulsion by Carter’s security staff also resonates with the heightened specter of deportation that other Asian immigrants, including Vietnam War–era refugees, have faced in the 21st century, which intensified under the Trump Administration. Although in recent years much attention has been given to deportees from Latin America and the Middle East, in the early 2000s the US also began accelerating deportment proceedings against nearly 5,000 Laotian refugees, nearly half of whom had been in the US for 20 years or more at the time of deportation orders. Many of these refugees are Hmong, an ethnic group that fought alongside the US during the Vietnam War, and who were offered asylum in the US during the 1970s (Mentzer 2020). The Trump Administration called upon Laos, Cambodia, and Vietnam to accept more deportees and offered these nations funding for reintegration programs. Having first secured a deal with Cambodia, Immigration and Customs Enforcement (ICE) officials under Trump pressured Vietnam to accept similar arrangements, as 7,000 Vietnamese immigrants had been ordered removed as of 2019. Such an agreement signaled a reversal of repatriation policy in place since 2008, which stipulated that Vietnam would not accept refugees who entered the US before 1995, which was the year Vietnam and the US resumed diplomatic relations (Dooling 2019). Although the upsurge in deportation signals the intensification of violence against Asian immigrants on a different scale, Ying’s encounter with Carter’s security staff calls attention to the broader racial politics of surveillance in the time of COVID-19.

ALS, COVID-19, and Biocitizenship

Amid the lockdown orders that separated Fan from her mother and forced Ying from Cong’s room, it is remarkable that Fan immediately publicized her predic-

ament on social media and mobilized the Twitter community. After asking her nearly 60,000 followers for help funding a food drive for Carter’s staff, she turned to Twitter once more and posted a screenshot of Ying’s anguished expression when Carter’s security team dragged the aide from the building. Fan then used Twitter to attract the attention of prominent Twitter personalities. The collective pressure persuaded Carter’s CEO to allow Ying to return to Cong’s room by the following day.

What is striking about Fan’s story is the role that social media played in raising public awareness about her mother’s predicament, which in all likelihood saved her mother’s life. Although Fan is a widely read writer for the New Yorker, she is by no means a high-profile celebrity, or someone with formidable political clout. Her story illustrates the power of social media to amplify the voices of ordinary people as they navigate life-threatening diseases and lobby for increased awareness, resources, and social and institutional support for themselves and others. Fan’s advocacy for her mother resonates with the modes of thought and action to which Nikolas Rose and Carlos Novas (2005) have referred in their concept of “biocitizenship.” Biocitizenship refers to emergent understandings and practices of subjectivity, based on a shared or mutually recognized biological condition. In what follows, I suggest that Fan’s story reflects both the history and horizons of biocitizenship vis-à-vis ALS and other age-related and debilitating conditions in the time of COVID-19.

Fan’s plea on Twitter attracted the attention of state-level politicians who helped lobby, with palpable effect, to return Ying to Cong’s bedside. In this respect, Fan’s advocacy for her ALS-stricken mother advanced along the same route as ALS awareness-raising campaigns of the 1990s and early 2000s, which gained public visibility with Congressional support. In 1992, President George H. W. Bush proclaimed May to be National ALS Awareness Month, a declaration which coincided with the ALS Association’s (ALSA) annual Volunteer Leadership Conference in Washington, DC. The conference assembled hundreds of volunteers, people with ALS, and health-care leaders, all wearing blue ribbons reading “Strike Out ALS” in tribute to the baseball player Lou Gehrig, who famously succumbed to the affliction, and after whom the disease has been nicknamed. The activists met with Congress members from all 50 states, in order to educate them about the disease, and their recommendations were clear: Congress needed to commit no less than $100 million to cure ALS by the year 2000 (PR Newswire 1992).

The drive to establish May as National ALS Awareness month had been spearheaded by US Senator Bob Graham (D-FL) and US House Representative Dante Fascell (D-FL), after a 20-year-old intern named Kevin Packman, whose father suffered from ALS, brought the matter to Graham’s attention. Over the next several years, the ALSA continued to pressure Congress to increase funding for the National Institutes of Health for ALS research, and to remove the legal barriers

to integrating stem cells into basic ALS research and drug development. In addition, the ALSA lobbied to increase Medicare benefits and to expand respite care for people living with ALS (CQ Transcriptions 2005). Along the way, the ALSA’s representatives drew upon names of prominent people besides Gehrig who had suffered from symptoms of ALS, including the US Congressman Jacob Javits, the actor David Niven, the musician Charles Mingus, and the astrophysicist Stephen Hawking (US Congress 1998).

From the 1990s to the early 2000s, the ALS community’s strategies of biocitizenship were focused on group action and oriented around seeking Congressional support, federal funding, and capitalizing on celebrity name-value in order to build investment in understanding and curing the disease. However, in the early to mid-2010s, the ALS community engaged in a number of media-savvy consciousness-raising activities, including the Muscular Dystrophy Association’s (MDA) commemorative website marking the 20th anniversary of President Bush’s 1992 proclamation of National ALS Awareness Month, as well as the highly publicized Ice Bucket Challenge of 2014. Fan’s advocacy for her mother during the COVID-19 pandemic recalls these kind of efforts, in that her efforts underscored the power of individual citizens to leverage social media to raise money, mobilize public sentiment, and pressure people and institutions to intervene on behalf of those stricken with ALS. .

In May 2011, the MDA launched a series of online videos called “ALS: Anyone’s Life Story.” The videos profiled 31 different people from 20 US states who were living with ALS and were posted on an interactive “ALS Awareness Month” website (ALSA 2011). The site also featured a gallery of artwork created by people with ALS, as well as a section called “ALS: It’s My Story Too,” to which people and families affected by ALS could contribute. In addition to amplifying the life stories of everyday people, the site helped develop new connections and support systems among the ALS community, across geographical space and time (Brown 2011). This dynamic of virtual community-building exploded in 2014, when three men with ALS, Peter Frates, Pat Quinn, and Anthony Senerchia, founded the Ice Bucket Challenge as a fundraiser for the ALSA. Tapping their extensive social networks, Frates, Quinn, and Senerchia challenged 17 million people with the choice of either donating to the ALSA or dousing themselves with a bucket of ice water. In response, over 2.5 million donors raised $115 million for the ALSA, the bulk of which was donated to ALS research. Between 2014 and 2019, researchers used the funds to identify five new ALS susceptibility genes, while subsidizing dozens of new drug and therapy trials. The funds from the Challenge also supported nearly 50 new ALS treatment centers in the US and helped increase the numbers of ALS research collaborations around the globe (ALSA 2019).

Fan’s outreach on her mother’s behalf also echoes other consciousness-raising and political advocacy efforts that have mobilized via online communications

technologies in the time of COVID-19, particularly on behalf of patients, families, and workers affected by outbreaks in nursing homes. On June 6, 2020, for example, the advocacy group Senior Disability Action hosted a gathering on Zoom called “Naming the Lost, Fighting for Our Lives: A Vigil and Call to Action.” The event created a meeting space for people from the disabled and elder-care communities to collectively mourn the loss of lives in nursing homes across the state of California due to COVID-19. The meeting’s attendees devised plans to hold nursing home executives accountable for their profit-oriented decision-making and to protest Gov. Gavin Newsom’s proposed budget cuts to social security, in-home supportive services, and programs for older adults and people with disabilities.

Attendees at the virtual meeting, who included people currently staying in California nursing homes, emphasized that the crowded living conditions, the drastic shortages of personal protective equipment (PPE), and the lack of adequate medical and safety training for staff had rendered patients and workers alike extremely vulnerable to COVID-19. The attendees also pointed out the disproportionately high concentrations of Black, Latinx, and Asian and Pacific Islander women performing low-paid care work in such facilities. In light of the hazards posed to residents, as well as the racial and gendered disparities in labor and vulnerability at nursing homes, participants in “Naming the Lost” pledged to contest efforts by lobbyists to extend liability protections for the nursing home industry in the midst of the pandemic. In addition, the event spurred ongoing campaigns on social media against Gov. Newsom’s proposed cuts to health-related and social services, which appeared successful when Newsom relented at the end of June 2020 (Myers 2020). Under the conditions of extreme insecurity that the COVID-19 pandemic has laid bare, both Fan and the Senior Disability Action collective have illustrated the power of everyday people to organize effectively via online communication technologies.

Conclusion

At the time of writing this essay, nearly a year after Fan and her mother’s crisis at Carter Specialty Hospital, Cong’s story still haunts my day-to-day awareness of the fragility of life among Asian and Asian American elders living in the US. Concurrently, I have been reminded of the staunch resilience of communities of Asian descent during the pandemic, particularly amid a surge of anti-Asian hate crimes that has intensified across the country, and that has coincided with the two-week-long celebration of the Chinese Lunar New Year. It’s been hard not to notice that older and elderly Asians have been targeted. In late January 2021, in Oakland’s Chinatown, where my grandmother lived for decades, someone snuck up behind a 91-year-old man, a 60-year-old man, and a 55-year-old woman on the same day, and viciously shoved them all to the ground. A stone’s throw away

in San Francisco, an 84-year-old man from Thailand was attacked and killed during his morning walk. In response, Asian American activists and celebrities have collaborated with community leaders to raise awareness of such incidents and to demand accountability (Brito 2021; Westervelt 2021).

As the nation’s death toll continues climbing amid haphazard national and local vaccine rollouts, I have been reminded not only of Cong’s fellow nursing home residents, but of the health-care providers, such as Ying and Zhou, who keep them alive. A year after major cities in the US first locked down, the pandemic continues to underscore the uneven distribution of vulnerability even among essential workers: although they only make up 4% of the nursing population nationwide, nearly a third of the nurses who have died during the pandemic in the US have been Filipinx (Shoichet 2020). Meanwhile, Black nurses, who make up only 12% of the nursing population, have accounted for 18% of the nursing community’s deaths due to COVID-19 (Marples 2021).

As the pandemic wears on, it seems appropriate to close with the words of the queer Korean prison abolitionist Hyejin Shim: “What are the legacies we’ve inherited, [and] which ones will we choose to protect?” (Asians 4 Black Lives 2020)

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