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After the End of Disease: Rethinking the Epidemic Narrative

This article is part of the series:

In conversations with people living with polio in Hungary, I often encountered members of the tight-knit community referring to themselves as “dinosaurs”. We are a breed that is about to die out, they said. Nobody gets polio anymore, some added, and they were right – epidemics, even sporadic wild polio cases disappeared from the country in the 1960s. Their words stood in stark contrast with celebrities like Jackie Chan, Desmond Tutu and Bill Gates showing on billboards all over the world that with the Global Polio Eradication Initiative we are ‘this close to ending polio’. Yet the urgency of the eradication campaign and the gradual disappearance of a polio generation over a lifetime both signified the same thing: the end of a disease. But what, exactly, is this end and what comes after?

In the following weeks, a series of posts by historians, anthropologists and sociologists will grapple with these questions as they consider epidemic narratives and the ways in which endings bear on global health issues. This series accompanies the interdisciplinary conference After the End of Disease, held on May 25-27 2016 in London. Bringing together practitioners and academics from various disciplines and fields, this event aims to initiate conversations on when and for whom diseases end, what happens when the end fails to come, who gets to determine the end and who gets left behind, how a focus on endings shape health policies and how we can critically rethink the temporalities of epidemics.

Public and academic discussions on the end of diseases have been abundant in the midst of recent epidemic crises. Faltering vaccination rates have seen old diseases, like measles and whooping cough resurface to epidemic proportions in the Global North. Several global epidemic crises, such as the swine flu and Ebola, have prompted international organizations, local governments, pharmaceutical companies, research institutions and individuals to respond in manifold ways with the aim of controlling and eventually ending epidemic diseases – even theoretical ones. Ending diseases for good have been the goal of several eradication campaigns over the 20th century and are the focus of several global projects.

What comes after the end of a disease is more often than not relegated to epilogues and usually comes up as an afterthought to the master narrative. Yet, diseases are often imprinted on the bodies of survivors, societies and cultures. Epidemics may change economic structures, social interaction, shape practices of international intervention and attitudes towards healthcare. In some cases, the proclaimed end of a disease leaves individuals or whole societies and states without resources previously guaranteed by the perceived epidemic threat. In others, the action of looking back after the end creates space for making moral judgements on individuals, societies, governments and international organizations.

The course that the epidemic narrative runs is usually well defined. Charles Rosenberg, in his classic 1989 paper, “What is an epidemic”, stresses the episodic nature of epidemics and lays out a particular dramaturgy of how epidemics take place. “Epidemics start at a moment in time, proceed on a stage limited in space and duration, follow a plot line of increasing and revelatory tension, move to a crisis of individual and collective character, then drift toward closure.” This narrative has been little contested since. Literary scholar Priscilla Wald in a more recent work, Contagious, portrays a similar plotline in what she calls the outbreak narrative, which “in its scientific, journalistic and fictional incarnations… follows a formulaic plot that begins with the identification of an emerging infection, includes discussion of the global networks throughout which it travels, and chronicles the epidemiological work that ends with its containment.” While Wald’s book takes important steps towards critically assessing the narrative by focusing on its consequences, stakes and cultural, scientific and political significance, how and when these narratives end are not much questioned. The end of the storyline in the case of epidemics and outbreaks, then, is successful containment.

Disability scholars have been at the vanguard of thinking past this narrative. As Catherine Kudlick pointed out in a recent paper on the survivors of smallpox, epidemics have a hidden history interwoven with disability and survival. Because of this, disability history has the potential for transforming how we understand the impact of epidemic disease, not just at the level of individual reactions but also at that of social and political responses. By placing attention on survivors rather than mortality, Kudlick argues, we can re-imagine epidemic scripts.

Scholars of global health, along with policy makers have a lot to benefit from these perspectives and can take the opportunity to broaden the scope of their study and action. By placing the ‘after’ into the centre of analysis, we can gain a more nuanced understanding of what epidemics are, the how we might study them and who and what gets left out of the master narrative of beginning, crisis and end. This shift of focus also highlights the narrative’s shortcomings and the stakes at hand as epidemic narratives shape global and local health policies.

Eradication is the ultimate ‘end’ to a disease, but the epidemic narrative is very much present in many other health issues, from obesity through cancer. And the dramaturgy of increasing tension, crisis and closure is seductive, especially regarding the end. We all yearn for a happy ending, or at least an ending of some sorts, when it comes to diseases that challenge our faith in medical knowledge, our political systems and rip the social fabric. Hardly anyone would contest that eradicating smallpox was a good idea, or argue that we’d rather have polio epidemics back. Furthermore, the narrative can be constructive in other ways. Epidemics and diseases more generally leave behind not just survivors, but public health practices and structures – not everything is always forgotten or works in exclusionary ways. Clear endings can give way to new beginnings.

At the same time, epidemic narratives can be as deceptive as seductive. The end of disease, may it be a goal, a wish, or a thing of the past, is often perceived in a particular and narrow sense. Endings often imply progress of some kind, while the stories of survivors overwrite the ones of failure, of anonymous loss. But endings are often messier than any international, national or local governing body would care to admit, and most diseases do not map onto neat narratives. Endings hardly mean that the story is finished. The contributions to this series look further to follow the story and investigate the very real stakes of theoretical musings on temporalities and endings and the consequences of such narratives in global health.

 

Dora Vargha is postdoctoral research fellow at Birkbeck College, University of London, participating in a research project led by Jessica Reinisch titled The Reluctant Internationalists. Her work investigates global health history and epidemic management from an Eastern European perspective.


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