Introduction
Musing, in the first months of a new century, on what he called “Infectious History,” Nobel Prize–winning microbiologist Joshua Lederberg (2000, 290) predicted, “The future of humanity and microbes will likely unfold as episodes of a suspense thriller that could be titled Our Wits versus Their Genes.” Lederberg was instrumental in defining the phenomenon that came to be known as “emerging infections.” The term referred to the proliferation of microbes that caused catastrophic communicable disease in humans. For Lederberg and his colleagues, the phenomenon was not an unknowable threat but a predictable effect of a kind of progress: an expanding global population was moving into areas that had been un- or sparsely inhabited by human beings—thus developing those spaces—while improvements in transportation and an increasingly global economy were moving goods and people rapidly around the world. As these microbes encountered a new species—humans, hence a new food source—they also found a new form of transportation, enabling them to hitchhike around the globe, perhaps mutating in the process. Humans are “major engineers of biological traffic,” warned Stephen Morse, Lederberg’s colleague, referring not only to literal transportation but also to the practices through which humans produce the ideal conditions for biological growth and dispersal (Morse 1996, 24).
When we began our work on this volume, we did not imagine we would soon find ourselves characters in Lederberg’s story. But we should have. Lederberg was hardly alone in his prediction. Epidemiologists and other researchers in the field had long been forecasting what the journalist Laurie Garrett called, in her best-selling 1994 book, the coming plague. And in September 2019, the annual report of the World Health Organization (WHO), entitled A World at Risk, warned, “The world is not prepared for a fast-moving, virulent respiratory pathogen pandemic” (World Health Organization 2019, 5). Citing the catastrophic effects of the 1918 global influenza pandemic, which killed fifty million worldwide—2.8 percent of the total population—the report predicted that “a similar contagion” would yield “tragic levels of mortality” and likely spur “panic, destabilize national security and seriously impact the global economy and trade” (15).
Although the COVID-19 pandemic certainly added urgency to this project, our original motivations stemmed from the insight that the pandemic made so broadly palpable: that health is a site in which the social and global inequities of the world are writ large. While the morbidity and mortality rates from SARS-CoV-2 speak loudly to racial and economic inequities worldwide, those same inequities track similarly along the lines of a wide range of health issues, communicable and otherwise. Together the persistence of these inequities shows how far we are from the UN’s 1978 Declaration of Alma-Ata that health is “a fundamental human right.” The 134 nations and sixty-four NGOs that signed the declaration in 1978 committed to working toward the goal of universal access to primary health care worldwide by the year 2000, the very year in which Lederberg marked the lack of preparedness for a future punctuated by pandemics and other illnesses. Neither the United States nor the world has come close to reaching that goal.
Despite this stagnation in health equity, we noted with great interest that when the pandemic struck, many in health care and among the general public turned to the humanities to understand a novel threat to global human health. History and literature became important resources for understanding global catastrophe and addressing our new reality, especially as they instructed us about the racist and xenophobic dimensions of pandemics past. Likewise, ethicists emerged as necessary experts, with hospitals anticipating ventilator, bed, staff, and later vaccine and treatment shortages that would require life-and-death decisions about care, often exacerbating the impact of the pandemic on racial minorities and disability communities. At the same time, medical schools across the US dramatically increased their humanities offerings. “Wouldn’t it be interesting,” Sarah Wingerter, physician and director of the Boston University Medical Campus Narrative Writing Program, wrote to one of us in the first pandemic months, “if COVID-19 gives narrative medicine/reflective writing a boost into mainstream medical education?” Then, on May 5, 2020, the Journal of the American Medical Association devoted an entire issue to narrative medicine. Primary care physician and writer in residence at Massachusetts General Hospital Suzanne Koven (2020) tweeted, “A whole issue of @JAMA_current devoted to narratives…. Who knew interest in storytelling and #medhum [medical humanities] would surge during a pandemic? (We knew).”
Our convictions both that health is and should be a central topic of critical inquiry and that the humanities has much to offer the study of health and the practice of medicine motivate this Keywords volume. As Lederberg observed, our understanding of health and our practices of health care are deeply shaped by the stories we tell, the language we use, the histories we draw on, and the value judgments we bring.
The idea of a keywords volume first emerged in tandem with the field of cultural studies, in which the sociologist Raymond Williams, author of Keywords: A Vocabulary of Culture and Society, was a central figure. The project had its origins in Williams’s feeling of estrangement on his return to Cambridge University in 1945 after more than four years in the army. It was as though, he and a colleague who had similarly returned from the war agreed, everyone around them was speaking a different language. The insight led to his 1958 field-defining work, Culture and Society: 1780–1950, and, later, Keywords. Originally intended as an appendix to Culture and Society, Keywords is a collection of short meditations on words that, Williams explains, had “at some time, in the course of some argument, virtually forced [themselves] on [his] attention because the problems of [their] meanings seemed to [him] inextricably bound up with the problems [they were] being used to discuss” (R. Williams 1976, 15). It grew out of his realization “that some important social and historical processes occur within language, in ways which indicate how integral the problems of meanings and of relationships really are,” and that new and changing words offer insight into new and changing relationships (22).
Although Lederberg was not a cultural critic, he came to a similar realization. Of the “new strategies and tactics for countering pathogens” that researchers could explore, he believed “our most sophisticated leap would be to drop the Manichaean view of microbes—‘We good; they evil.’” “Perhaps,” he opines, “one of the most important changes we can make is to supercede [sic] the 20th-century metaphor of war for describing the relationship between people and infectious agents” and replace it with a “more ecologically informed metaphor, which includes the germs’-eye view of infection” (Lederberg 2000, 292–93). A new metaphor, he suggests, would lead to a crucial conceptual shift, the effects of which would be immense. Its benefits might range from research into largely ignored symbiotic microbes and a better understanding of the human biome to a more productive relationship with antibiotics and antibacterial products and new, long-term solutions for intransigent epidemic diseases.
By imagining the future of health, health care, and health research as a question of vocabulary, Lederberg underscores the centrality of words to the ways we inhabit the world. When epidemiologists, medical researchers, and practitioners go into the field, their labs, and their clinics, they bring their worldviews and the vocabularies that shape them. Words are tools that affect how we understand a problem and how we approach a solution. Researchers rely on these tools, as does the general public. We hear repeatedly that we are “at war” with SARS-CoV-2—us versus them—but that obscures what the germs’-eye view might clarify: humans’ many roles as traffic engineers and the social and geopolitical conditions that create such outbreaks and turn them into pandemics. Ecological metaphors—ones that convey the germs’-eye view—remind us that the planet, as well as the human body, is a biome; living organisms are intricately interconnected. As Lederberg noted in the early years of emerging infections research, “Many people find it difficult to accommodate to the reality that Nature is far from benign; at least it has no special sentiment for the welfare of the human versus other species” (1996, 3). War is a human, not a microbial, phenomenon. From public health decisions made in the absence of vital knowledge about a deadly new virus to the widespread efficacy of disinformation campaigns, it has never been clearer that the language of health and health care is not simply a method through which we transmit information but a knowledge-shaping instrument—one that must be used with care and deliberation.
Words do not only crystallize and circulate; they are also records of historical change. They are shaped (and sometimes haunted) by their origins, and the permutations along the way offer an account of the changing relationships and environments—the debates, the struggles to make sense of the world—through which they circulated and helped fashion. Health derives etymologically from Old Norse meaning “holy, sacred” and from the Proto-Germanic “whole.” Its meanings moved generally from a bodily focus to the broader sense of spiritual as well as physical well-being. In 1946, the WHO, in its constitution, offered a definition of the word that marked the most fundamental commitment of the organization: health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (“Constitution of the World Health Organization” 1946, 1315). This definition was ratified in 1948, along with the adoption of the United Nations Universal Declaration of Human Rights, which included the principle that “everyone has a right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control” (UN General Assembly 1948, article 25). That assumption informs the most basic precepts of any social and environmental justice movement. Health discrepancies among populations record the inequities of any given society; they measure what Stokely Carmichael and Charles Hamilton called “institutional racism”—the difference in mortality rates, for example, of white and Black and Brown babies—and what Johan Galtung (1969), following Carmichael, has termed “structural violence” or “social injustice.” Galtung writes, “If people are starving when this is objectively avoidable, then violence is committed, regardless of whether there is a clear subject-action-object relation, as during a siege yesterday or no such clear relation, as in the way world economic relations are organized today” (171).
The capaciousness and pervasiveness of health—as a broad description of proper functioning, as an intimate term we use to understand our minds and bodies, as a wide-ranging cultural imperative, as a moral judgment, as a word used to describe a set of professions, and as a central element of all life—make it a fundamental keyword for today’s world. It has a set of academic, professional, and popular meanings that mark what Raymond Williams calls “the ways not only of discussing but at another level of seeing many of our central experiences” (1976, 15). These linguistic negotiations play out in the home, in the classroom, in the examination room, in the courts, in the press, on the internet, and most broadly, across the geopolitical relations of our planetary biome. This capaciousness and complexity pushed us to title this volume Health Humanities instead of Medical Humanities and are why we have insisted on health in its broadest sense, not a word that is the exclusive purview of medicine and the health professions but a concept fundamental to all life (cf. Crawford et al. 2010; T. Jones, Wear, and Friedman 2014; T. Jones et al. 2017).
The proliferation of keywords volumes in the twenty-first century is, moreover, an indication of changes in the nature of our fields of study. The rapid technological advances and dramatic geopolitical shifts have given rise to new and changing words—for example, the newly coined and shifting terms that have increasingly shaped an English-language lexicon during the COVID-19 pandemic alone, from Covidiot and Zoombombing to the more nuanced meanings of white supremacy and systemic racism to debates over the definitions of fundamental public health terms like mild and endemic. This proliferation, moreover, in turn signals the need for new kinds of knowledge. As older disciplines shift to new fields of study, keywords volumes have surfaced to help negotiate the changing conceptual terrain. Health humanities is one such field.
Because the concept of health persistently defies disciplinary boundaries, we believe a keywords project provides the best conceptual architecture for the health humanities. The lexicon that follows invites students, scholars, and other professionals both to interrogate the words we use to frame the central debates in the field and to work toward a shared vocabulary. Through this approach, we begin to address crucial questions for the health humanities: What needs have given rise to this field of study? What are some of the ambitions, struggles, and key debates that are defining the field? What words are surfacing or changing to make sense of the knowledge emerging in this field? How do the definitions or uses of those words interact, collide, contradict, occlude, and generate new understanding? What kinds of work, care, and community do they make possible, and what insights do they foreclose? Are there words that might serve us better?
Just as we recognize the capacious multidisciplinary reach of the term health, we are equally committed to the capaciousness—and rigor—of the term humanities in the title of our volume. We recognize and embrace the diversity of health practitioners, therapists, social scientists, artists, and humanities scholars who compose the health humanities, from the broad commitment of the medical humanities to humane health care to the social justice orientation of the health humanities, as Erin Gentry Lamb and Craig Klugman (2019) have argued. At the same time, we understand the humanities themselves as a set of rigorous ways of knowing and methods of analysis that have a unique and foundational place in the study of health (for more on humanities in the health humanities, see “Humanities”). As Catherine Belling has argued, the humanities cannot be reduced to the art or the science of fields like medicine but instead offer a crucial third perspective that questions “the epistemology, ethics, and language of both biomedical science and clinical practice” (2017, 20). Approaches characteristic of the health humanities make both empirical and nonempirical analysis possible as they facilitate movement across scales of analysis. Moreover, humanities-based inquiry offers a flexibility to move between empirical (already central to knowledge making in medicine, the health sciences, and the social sciences) and nonempirical ways of knowing (philology, close reading, cultural analysis and history, philosophical and theoretical inquiry, for example) that holds powerful potential, as Lederberg described decades ago, to shed new light on foundational and critical questions in health and health care. In the spirit of his challenge, we begin from the study of what and how words mean, what they do, and how they have organized knowledge, culture, medicine, science, and society in the past, how they do so in the present, and how they might do so in the future—fundamental questions the humanities prepare us to answer.