We measure and count in response to disasters as a way to ensure that the losses are not forgotten, to put down a mark when it is too hard to tell a story, and to preserve the possibility of accountability. From those numbers, we rebuild memories fragmented by trauma and we create the tools we will need to survive or even avoid the next catastrophe.
When it comes to the impact of Covid-19, our counting is limited in both scope and intention. To inform policy decisions, institutions quantify Covid deaths, vaccinations, and hospitalizations, metrics that measure the impact of this pandemic only in the barest of medical terms and often with significant lag and inaccuracies. But, in order to fully understand and adequately respond to this pandemic, we need additional quantitative and qualitative information.“Disaster studies scholars have the ability to demand more from the numbers, to ‘account for care,’ and to suggest new domains of research in which the qualitative should compete with the quantitative as a form of vital intervention in the service of disaster victims.”
This essay suggests that disaster studies scholars should work diligently in two strands of emerging research in light of the Covid pandemic. First, important new work at the convergence of epidemiology and social science allows us to more rigorously track the impact of disease beyond the real-time “dashboard” of case and death totals. Second, the prosocial response to the pandemic by mutual aid groups and communities of grief and memorialization have shaped the lived realities of the Covid era, far outstripping the willingness or ability of public officials to account for these broader forms of social care. Abandoning numbers entirely seems out of place in the technocratic world of disaster response. Even so, disaster studies scholars have the ability to demand more from the numbers, to “account for care,” and to suggest new domains of research in which the qualitative should compete with the quantitative as a form of vital intervention in the service of disaster victims.
The count is never the real count
Even our best Covid tracking numbers—the ones to which school officials, medical officers, and governmental decision-makers turn—are incomplete at best and misleading at worst. On the news and in our conversations with our families and friends, we mourn the latest death tolls: over 5.85 million globally and 928,490 in the United States as of this writing (February 17, 2022). We speculate about overall infection rates and worry about the continually forecasted impacts on the GDP. And with the Omicron variant, testing results and hospitalization statistics are once again treated as breaking news. Nevertheless, these kinds of statistics only tell part of the story of how the pandemic is changing the world.“Even when accurate, data is rhetorical—politicians and pundits tip the scales in one direction or another, depending on where they stand.”
Data about disasters is always incomplete while the event is unfolding and often remains so for some time after. Deaths caused by disaster go undercounted for many reasons: the limited time and resources available to the public health experts tracking them; complications in categorizing and counting death, which is a complex phenomenon when we think about comorbidities and inequality; and outright governmental misdirection. Even when accurate, data is rhetorical—politicians and pundits tip the scales in one direction or another, depending on where they stand. Notable examples have included Covid-19 data from Florida, where the data seems to have been sequestered by Governor DeSantis,1Moosa Tatar, Amir Habibdoust, and Fernando A. Wilson, “Analysis of Excess Deaths During the Covid-19 Pandemic in the State of Florida,” American Journal of Public Health 111, no. 4 (2021): 704–707. and New York, where nursing home death undercounts have been reported at 50 percent or more. Furthermore, since the first cases of Covid-19 were detected in December 2019, we have seen several cases where the data were fundamentally flawed due to human-technological error. For example, on October 5, 2020, news outlets started reporting that Public Health England had missed 15,871 positive test results in their tracing due to human and technical error.2Gary Hampson, et al., “Open Collaboration, Data Quality, and Covid-19,” IEEE Software 38, no. 3 (2021): 137–141. Neil Pearce and colleagues have cataloged several early errors in epidemiological tracking, noting that routine health system data is insufficient in the case of a global pandemic.3Neil Pearce, et al., “Accurate Statistics on Covid-19 Are Essential for Policy Guidance and Decisions,” American Journal of Public Health 110, no. 7 (2020): 949–951.
In addition to being incomplete, disaster mortality and morbidity numbers are also misleading in that they don’t begin to capture all of the many ways that disasters wreak havoc on the health of communities. How do we calculate the impacts on those of us who remain—the changed life trajectories, broken families, and lasting trauma that will endure long after the pandemic? A 2020 study estimates that for every person who dies of Covid-19, there will be nine close family members who are deeply affected.4Ashton M. Verdery, et al., “Tracking the Reach of Covid-19 Kin Loss with a Bereavement Multiplier Applied to the United States,” Proceedings of the National Academy of Sciences of the United States of America 117, no. 30 (2020): 17695–17701. That means over 7 million people in the United States have profoundly experienced the loss of a family member or close relation thus far. Understanding the mental health impacts for survivors and family members must comprise an important metric as we calculate the costs of Covid. Building on the bereavement approach, a 2021 study estimates that, in the first year of the pandemic, 1,562,000 children around the world lost a parent or primary caregiver, concluding that “orphanhood and caregiver deaths are a hidden pandemic resulting from Covid-19-associated deaths.”5Susan Hillis, et al., “Global Minimum Estimates of Children Affected by Covid-19-Associated Orphanhood and Deaths of Caregivers: A Modelling Study,” The Lancet 398, no. 10298 (July 2021): 10298.
Mortality counts also miss the occupational and chronic illness ramifications of Covid—both of which are only beginning to come into focus. For example, consider healthcare workers impacted by the crisis. In a survey conducted between May and October 2020, 38 percent of US healthcare workers reported feeling anxiety and depression, while 49 percent had burnout.6Sara Berg, “Half of Health Workers Report Burn-out amid Covid-19,” American Medical Association Online, July 20, 2021. Meanwhile, the American Nursing Association is calling the nursing staff shortage a national crisis.7Ernest Grant, letter to Secretrary of Health and Human Services Xavier Becerra from the American Nurses Association, September 1, 2021. From devastated family members to burnt-out medical staff, Covid-19 has transformed the lives of so many who simply aren’t accounted for in our regular disaster metrics. We are seeing the consequences of this absence in real-time in the United States, where a focus on decreased mortality led many to overlook the worker shortages now hobbling healthcare and other industries amid the fourth wave of Covid with the Omicron variant. Only very recently have researchers begun to model the impacts of “Long Covid” on disease survivors. One study finds that greater than 50 percent of Covid survivors—that would mean over 25 million in the United States alone—suffer from Long Covid symptoms including “fatigue, dyspnea, chest pain, persistent loss of taste and/or smell, cognitive changes, arthralgias, and decreased quality of life” at least six months after recovery from acute illness. According to the researchers, “there is a dire need to better understand the lasting and emergent effects of Covid-19.” The alarm bell is sounding for a wave of chronic illness that we barely understand).8Destin Groff et al., “Short-term and Long-term Rates of Postacute Sequelae of SARS-CoV-2 Infection: A Systematic Review,” JAMA Network Open, October 13, 2021.
In what ways will healthcare workers and pandemic survivors—numbering in the millions in the United States alone—inspire public health research and policy reform? The persistence of gun control organizations like the Brady Campaign and Moms Demand Action is instructive, as they were formed in the aftermath of mass shootings and have been highly effective in demonstrating the broader public health impacts of gun violence. The US Congress has already called Long Covid survivors to offer public testimony, and the rapidly growing scale and influence of Long Covid advocacy groups springing up in the United States and around the world should awaken the interest of disaster studies researchers.
Accounting for care“Early in the pandemic, mutual aid organizations around the country made thousands of deliveries of groceries and life-saving medicines for their homebound or at-risk neighbors.”
Thinking beyond death and suffering, we rarely see numbers that capture the enormous efforts people have undertaken since 2020 to sustain their communities in the midst of this pandemic. In our public discourse, there is widespread knowledge of mortality and infection data, but we know woefully little about the work that our communities and neighbors are doing every day to help each other through this slow disaster. Early in the pandemic, mutual aid organizations around the country made thousands of deliveries of groceries and life-saving medicines for their homebound or at-risk neighbors. Communities and activists pooled together millions of dollars so that people who lost income or were struggling to make ends meet could pay their rent or their utility bills. We don’t have a complete picture of the number of phone calls and emails that organizers made to mobilize their community and protect vulnerable people.
Community aid is common during disasters. Notwithstanding popular myths about helplessness, violence, and looting, people in times of acute disaster are historically prosocial.9Jamil Zaki, “Catastrophe Compassion: Understanding and Extending Prosociality under Crisis,” Trends in Cognitive Sciences 24, no. 8 (2020): 587–589. More often than not, we behave rationally and altruistically to address the needs left unmet by broken systems. Neighbors are a vital, but too often ignored, part of the network of first responders that are working to keep individuals and families safe during a crisis. Healthcare providers, maintenance staff, and other essential frontline workers have been crucial for holding society together during the pandemic. Despite arguments in the humanities and social sciences for greater attention to the vital, if often mundane, role that care work plays in the production of everyday life, such work remains mostly invisible.10Berenice Fisher and Joan C.Tronto, “Toward a Feminist Theory of Caring,” in Circles of Care: Work and Identity in Women’s Lives, eds. Emily K. Abel and Margaret K. Nelson (SUNY Press, 1990), 35–62. This work is often done by women and people of color from some of our most vulnerable communities.11University of Minnesota Press, 2017More Info → The fact that we don’t have adequate metrics of care has a great deal to do with this: Those providing the care have historically seen their labor undervalued and underrepresented even in non-disaster times.12→de la Bellacasa, Matters of Care.
→Miriam Ticktin, Casualties of Care: Immigration and the Politics of Humanitarianism in France (Oakland, California: University of California Press, 2011).
Much of this work has gone uncounted in public narratives about Covid, and this matters: In technocratic societies, if we don’t count it, it’s difficult to see. The accounting and reckoning we do today are what will be preserved in the historical record, and that record informs future disaster policy and emergency management funding. We have lost so much information about how women in particular mobilized as searchers, nurses, and laborers in previous pandemics for this very reason. It is a problem for long-term memory that mutual aid work is ignored and even undermined by formal response entities even though it is critically important. Making care visible as a disaster measure both in public discourse and in scholarly work also helps highlight all of the ways in which the government response is failing to serve the most vulnerable among us, some of which are unknown or unexpected. Accounting for care prefigures where we need to go, how we will mend our communities, and build resilience not just to Covid-19, but to the many entangled emergencies that we are facing.“While gathering metrics can be a tool of management, we can also use them in order to serve those who are impacted by the decisions and indecisions of government and large corporate entities.”
While such actions may seem unmeasurable, this feeling is itself an artifact of a disaster mindset that draws heavily on war and the market as frameworks for understanding the pandemic and disasters more generally. Deaths and dollars are the measures that matter in those frames. Metrics are often deployed in order to increase transparency and accountability for people and organizations with power and responsibility. While gathering metrics can be a tool of management, we can also use them in order to serve those who are impacted by the decisions and indecisions of government and large corporate entities. As Yeshimabeit Milner notes, “data is a powerful tool for social change”. The development or extension of metrics of care within public discussions of disaster impacts and scholarly disaster research is needed in order to understand the scope and scale of care work that individuals and communities have undertaken in response to Covid-19.
No attempt to measure the care that communities do for each other will successfully account for all of the vital work that is happening right now, but that is true of all disaster data. We have resources available to us now—data from Facebook, Reddit, and NextDoor groups, for example—that might give us a glimpse. In the midst of the early waves of the pandemic, the TownHall Project created a national registry of local mutual aid groups. Hospitals and schools track the overtime of their staff, but this data is rarely aggregated in ways that show us the true scope of the ways the labor force responded to the pandemic. Crowdfunding websites like ioby and GoFundMe were used extensively by mutual aid groups to support their work, but no study has yet to aggregate the full amount of these donations. Within disaster studies scholarship and disaster response practices, we can build on these data points to develop more expressive and complex methods of accounting not just for the deaths of Covid-19, but also to see more clearly how we are responding to the long-term damage being done through psychological and economic trauma. At the same time, we should be able to draw strength from measures that reveal care-in-action within families, communities, schools, and hospitals. These measures of care may be the basis of recovery and can help us navigate toward a less catastrophic future.
In addition to developing better disaster metrics, disaster scholars and responders should understand and utilize qualitative or mixed methods tools to document loss and care during events like the pandemic. There have been a few academic studies of this kind, including an analysis of challenges and solidarities experienced by frontline medical staff in the United Kingdom13Cecilia Vindrola-Padros et al., “Perceptions and Experiences of Healthcare Workers during the Covid-19 Pandemic in the UK,” BMJ Open 10, no. 11 (2020). and a study of mutual aid response to the pandemic in New York City.14Robert Soden and Embry Owen, “Dilemmas in Mutual Aid: Lessons for Crisis Informatics from an Emergent Community Response to the Pandemic,” Proceedings of the ACM on Human-Computer Interaction 5, no. CSCW2 (2021): 1–19. In addition, memorialization projects like #FacesofCOVID and Those We’ve Lost are utilizing memorial narratives and personal storytelling to help people recognize the people behind the dashboard numbers. Similarly, the Covid Memorial Wall, which began as a small-scale personal expression of loss and memorialization, has grown into an official national memorial and a collective site of “art therapy.” This kind of work can be useful both for the public and for the individual family members who are struggling to come to terms with debilitating loss. Metrics matter, but other ways of accounting for the impacts of the Covid pandemic and the breadth of ways our communities have responded are also needed.
Conclusion“This is the beginning of a research process aimed toward developing alternatives for more inclusive and humane data communication in the midst of disaster.”
Last year we hosted a small online workshop that brought together disaster researchers, designers, data scientists, and public health experts to examine the Covid data dashboards that have, for so many, provided a view of our current crisis. Over the few hours we spent together, participants asked critical questions: Who is the audience for these tools? What assumptions about the interests and capacities of this audience do dashboard creators make? What is included in the narratives of the pandemic that these dashboards convey? What is left out? We also asked them to draw alternatives. The designs they sketched impressively challenged the notions of agency, impacts, and authority that are baked into the data we use to make sense of Covid-19, and pointed toward a much broader set of options we can consider. This is the beginning of a research process aimed toward developing alternatives for more inclusive and humane data communication in the midst of disaster. This work feels particularly relevant during this fourth Omicron wave, where the worrying vertical lines of infections combined with the knowledge that mortality is a lagging indicator has left people casting about for useful information to keep themselves and their communities safe. Here, we have raised some areas where more work can be done, both in terms of collecting data and presentations of that data for different audiences, but there is much more work to do. In some sense, all social science research about contemporary life is disaster research. It is time that we start to draw on the breadth of this expertise in developing the data and dashboards we use to tell the story of Covid-19.
Banner photo: Geoff Henson/Flickr.
→Miriam Ticktin, Casualties of Care: Immigration and the Politics of Humanitarianism in France (Oakland, California: University of California Press, 2011).