by Danielle Spencer
As we look toward wending our way out of the COVID-19 global health crisis, what tools can we use to make sense of what we are experiencing? For if there is anything self-evident in our current predicament, it is that any given field—medicine, sociology, political science, psychology—are insufficient in isolation. “Pandemic,” from the Greek πάνδημος, means of or belonging to all the people; and the challenges of this pandemic compel us to take a pan-disciplinary approach.
As it happens, the need for an inclusive and transdisciplinary approach to healthcare is one which has been expressed with regularity. In the U.S., for example, there have been a series of movements in the last 50 years or so; from the biopsychosocial model to patient-centered care, these reforms seek various ways of enacting Francis Peabody’s dictum that “the secret of the care of the patient is in caring for the patient.” “Patient-centered care” should be a redundancy—like food-centered eating, or text-centered reading, or air-centered breathing—but it’s an important corrective to the reductive proclivities of western biomedicine. In a similar spirit, the field of bioethics, arising in response to terrible abuses in research practices, is an intentionally interdisciplinary tent, inviting ethicists, clinicians, epidemiologists, researchers, and everyone with a stake in what happens to our bodies to join the dialogue. Just how inclusive and effective these efforts have proven to be is of course another matter entirely.
In more recent years my own home field of narrative medicine has emerged to join the effort. In part nourished by the late-20th-century “narrative turn” in many humanities and social sciences disciplines (some might be surprised that we were ever estranged from narrative—but some of us certainly were) the field centers the importance of narrative competence in training clinicians and empowering all persons to engage with the narrative complexities of healthcare, striving for greater equity and justice.
For narrative is ubiquitous; like air-centered breathing, narrative-centered care is affirming something that is always present. As Roland Barthes describes:
The narratives of the world are numberless. Narrative is first and foremost a prodigious variety of genres, themselves distributed amongst different substances—as though any material were to receive man’s stories. Able to be carried by articulated language, spoken or written, fixed or moving images, gestures, and the ordered mixture of all these substances; narrative is present in myth, legend, fable, tale, novella, epic, history, tragedy, drama, comedy, mime, painting . . . stained glass windows, cinema, comics, news items, conversation.
…and we would add: case reports, rashes, coughs, silences, how you describe your knee pain to your physical therapist, how you don’t describe your knee pain to your physical therapist, clinic notes—all are forms of narrative.
This isn’t a tenet widely accepted in biomedicine, where students are taught to distinguish between the patient’s “subjective” symptoms and account of illness and the “objective” findings of the physical exam, lab results and imaging. The observer is elided from the latter in order to buttress its inviolable epistemic authority; by not acknowledging its form as a narrative, the question of who is authorized to tell this authoritative story remains unquestioned, as does the effect of the particular form and rhetoric of the story. Even in the many clinical spaces where attentive history-taking and great care and respect for the individual in the patient role is paramount, the rhetorical and institutional structures of the field militate against true reciprocity. When I teach clinicians who are learning about principlist bioethics, they invariably proclaim that it’s important to let patients exercise the first principle of autonomy. But if you’re the one doing the letting, it’s not autonomy.
In this vein, Bradley Lewis and Felice Aull liken medical discourse to Edward Said’s description of Orientalism. Similar to Orientalism, as they describe,
medical discourse is the cumulative effect of selecting and reconstructing ‘the patient’ and ‘disease’ through the lens of the medical expert’s perspectives. Medical discourse produces a discourse of background assumptions and constraints that negatively stereotype the patient and disproportionately benefit the medical community. Like Orientalism, medical discourse is largely a monologue and a mono-logic; clinicians and biomedical scientists create medical discourse, “patients” do not. […] Like Orientalism, medical discourse essentializes and reduces the patient, making empathic communication between physicians and patients extremely difficult.
As an example, Lewis and Aull point towards the medical chart as “a form and language developed by the medical profession and mirrors the assumptions, point of view, and interests of the medical culture out of which it arose.” In response, physician-scholar Rita Charon’s narrative medicine interventions range from introducing the “parallel chart” in medical education, an exercise which foregrounds aspects of the healthcare experience for both clinician and patient which do not typically find a place in the standard medical chart—to turning the keyboard around and offering it to her patients, to write directly into the electronic medical record.
Further: can we envision a system in which biomedical knowledge is rightfully respected and honored, and the individual in the role of the patient is truly empowered—not dependent upon such a gesture? Who is entitled to write this particular narrative, after all? More broadly, the field invites clinicians, scholars, writers, graphic novelists, activists—fellow persons with bodies—to ask what new questions and perspectives we might find by foregrounding narrative. For attending to narrative functions as something of a Trojan horse, challenging the exclusive authority of biomedicine without abjuring its formidable capacity to extend and improve our lives.
How are such tools of narrative analysis helpful to us—or not at all—in our current crisis? The pandemic—of or belonging to all the people—is also an apocalypse, which derives from the Greek verb ἀποκαλύπτειν, to uncover, disclose. What is uncovered, disclosed in this rupture, and how might we take this unwelcome illumination as an opportunity? What sort of questions might we be asking?
- What historical precedents inform our current narratives of vaccines and public health? In 19th-century England, the smallpox vaccination was understood by anti-vaxxers to be “as bodily assault, a violent disruption of the physical integrity of the individual that was harmful both to physical and to spiritual health,” as Natalie Durbach describes. Evincing vampiric terrors and vivisection fears, the narratives were not so different from the ones we are facing today, debating masks and vaccines. “A father summoned to the Woolwich Police Court in 1891 asserted that he resisted the vaccination of his child for fear of a nineteenth-century version of mad cow disease: ‘It is well known that the bulls go mad every seven years, and that the cows make them mad’; when these same cows are used for vaccinating children, he reasoned, the children go mad. ‘The madhouses are full of vaccinated children.’” How can an understanding of the continuity of these narratives help us to address the fears they represent, and the very real social inequities to which they are often responding?
- When an individual offers a reason for getting vaccinated or not; wearing a mask or not; how is such a narrative framed? “Personal choice” as a reason not to mask/vaccinate is a story which asserts the autonomy of the individual while ignoring the bedeviling question of where the duty to the commons rests in the balance. What are the broader narratives nourishing this particular narrative framing? Does identifying the respective history and context of competing narratives help us to understand one another better, or are we hopelessly entrenched?
- How might we understand the effects of having “unreliable narrators” at the helm of public discourse—untrustworthy and mutually contradictory political leaders; absent public health figures? Which narrators are we harkening to? Has social media wrought a fundamental shift in the role of such narrators?
And: How might we hear the stories of untold suffering?