Features

Not Getting Closure: Reflecting on the Vindication of Gaetan Dugas

Now drowned in the torrent of post-election analysis, on October 26, 2016, the journal Nature published a study which traced genomic data in an effort to map the spread of HIV in North America. The newsworthy conclusion of the study was a full-throated scientific vindication of Gaetan Dugas, the man erroneously dubbed “Patient Zero” in Randy Shilts’ And the Band Played On, a popular depiction of the spread of HIV in the United States during the early 1980s. Dugas was a French-Canadian flight attendant who became a person of interest in the epidemiological detection of HIV in its early days, since he had had sexual contact with so many of the early cases on the West Coast. The original researchers dubbed him “patient ‘O’” (for “outside”); Shilts and others translated this as “patient ‘0’”, or the index case. Shilts also portrayed Dugas as willingly careless and negligent. The study published in Nature concluded that Dugas was not the index case in North America; his demonization by Shilts and other media has been corrected.

The fervor over this vindication — garnering editorials and spots in The New York Times (here and here), NPR, the Chicago Tribune, New York Magazine, and Science magazine, among others — led me to reflect on the spectacle of disease narratives, not only what they emphasize, but what they tend to obscure. Epidemics are both disease events and media events. The spectacle of disease — the “literary” construction of a disease event in media, especially visual media — constitutes the social and political force of epidemics.

As someone interested in literature and its cultural stakes, I turn to Priscilla Wald who has written arguably the definitive statement of what an epidemiological narrative is and how it takes shape. In her book Contagious: Cultures, Carriers, and the Outbreak Narrative, Wald argues that disease outbreaks are in large part constructed through the crafting of a narrative, usually involving an index case or a “patient zero” such as Typhoid Mary or Gaetan Dugas (Wald 2008). The production of these narratives is typically bound up with literary concerns, such as the assignment of “hero” and “villain” status to a person or group. These narratives have tangible effects on policy and public health administration. In typical outbreak narratives, the hero is the scientist or doctor, the villain is the disease and its human carriers. “Typhoid Mary,” a woman named Mary Mallon, spent decades in quarantine, and died in custody: she was widely demonized, and public health officials enjoyed the glory of containing such a scourge. Mallon’s nom de criminel is still a euphemism for a person with dangerous influence. For example, a character named “Typhoid Mary”, also known as “Mutant Zero”, appears as a supervillain in Marvel comic books — not as a typhoid carrier but as a lustful, murderous mentally ill criminal.

Mary Mallon’s story is a tragedy, not only because of the people who contracted typhoid from her, but because of the sense we get that all of her “villainous” qualities seemed out of her control: she was an asymptomatic typhoid carrier, but also she insisted that the authorities had no right to imprison her and perform medical tests on her body. Her very resistance was considered criminal — she was putting the public at risk, after all, so her incarceration and forced testing were considered justified in the name of social security. Wald argues that Mallon’s predicament played out in the media as a matter of defense of class and race: “Mallon’s ethnicity, class, and occupation, combined with her condition, ensured her transformation into an object of disgust and reprobation in the public health and medical literature of the period” (Wald 1997, 195). She was criminalized and systematically represented as a threat to social and cultural norms. As with Mallon, since the study in Nature, Dugas’s story has been recast as a tragedy, again not only for the role he played in transmitting a fatal disease, but because we are faced with a case in which the “perpetrator” is also a “victim.” The irony, of course, is that the “truth” of the Dugas story was well known by the CDC investigators who originally interviewed him, and that it took a scientific study — DNA evidence, as in a criminal investigation — to exonerate him.

Charles Rosenberg also highlights the apparent similarities between epidemics and literary narratives. For example, in a 1989 essay “What is an epidemic? AIDS in historical perspective”, Rosenberg outlines the “dramaturgic model” of epidemics in which

Epidemics start at a moment in time, proceed on a stage limited in space and duration, following a plot line of increasing and revelatory tension, move to a crisis of individual and collective character, then drift toward closure. (Rosenberg 1989, 2)

His focus on the tension of an epidemic being “revelatory” — that is, revealing some underlying truth of the demos among which the outbreak has occurred — and the “crisis of individual and collective character” places emphasis on the self-reflective questioning that arises in the heat of epidemic virulence. Suddenly, all the uncertainties, anxieties, and fears that had been kept hidden by the social mores of civilian life bubble to the surface. Neighbors reject one another’s company, government authorities assume strict controls over movement and treatment, and newspapers publish editorials wondering how many civil liberties must be surrendered in order to establish safety and security. In the case of the AIDS crisis, the script may have been flipped: government authorities didn’t do enough to stop the disease or manage its treatment given a (well-documented) moral fear of homosexuality, which had been unscientifically and unfairly tethered to the disease as part of the construction of an “outbreak narrative.”

This leads me away from the sound and fury of the spectacle of epidemics toward the ending of Rosenberg’s drama: the closure, the moment when the curtain drops and the house lights come up, when the narrator falls silent. This is what is “troubling” about the vindication of Gaetan Dugas. He was the closure, he satisfied the need for an “ending,” which is really the hunger for meaning, to impute straight-forward sense onto a brutal, irreducibly complex socio-biological “imbroglio,” to borrow a term from Bruno Latour. The study in Nature, in “setting the record straight” on Dugas, in doing some belated and posthumous justice by de-vilifying him, pulls back the curtain on the HIV spectacle. A spectacular crisis tends to be all-encompassing, such that when the crisis abates and the key to the mystery is unveiled — it was the flight attendant, in the bath house, with the virus — the audience can feel as though it needn’t bother with critical consciousness any longer. With Dugas in his role as villain, the event is given meaning, even if that meaning is false and only serves to perpetuate fear of the Other.

I wonder if the vindication of Gaetan Dugas should highlight the less dramatic and more structural “realities” that give rise to or even facilitate crises at the outset. Perhaps we can be reminded to pay attention to the price of the tickets and the plushness of the seats and the ornateness of the proscenium arch — that is, what is not on stage may be as important and compelling as the main action. When the drama begins, the lights dim, and we cannot see ourselves, or the person sitting next to us. We quiet down; during the intensity of the performance it would be wrong to speak out against what we see. Under the spell of a spectacular outbreak narrative, we are seduced by the immediacy of the crisis and perhaps lose sight of the ongoing social and political inequalities that are difficult or impossible to narrate, either because they are quiet, or invisible, or so slow they do not fit into a news cycle or a sound bite. But we need to remain vigilant.

I am reminded of what is already a classic work of social and environmental criticism, Rob Nixon’s Slow Violence and the environmentalism of the poor. Nixon, a literary scholar who takes aim at social and environmental concerns, analyzes the deep connection between the way we tell stories and the way we act politically. Slow Violence focuses on environmental violence that occurs over long time spans, the urgency of which is undervalued, and that most often affects populations with less power and less privilege. His work resituates catastrophic events like global warming — or for our purposes, global health crises and disease outbreaks — in light of the value we place on the shape of the narrative, its ability to proliferate across contemporary media and to compete with other spectacles vying for our attention. Giving meaning to what happens slowly, unspectacularly, is a real and important challenge. Nixon wonders,

In an age when the media venerate the spectacular, when public policy is shaped primarily around perceived immediate need, a central question is strategic and representational: how can we convert into image and narrative the disasters that are slow moving and long in the making, disasters that are anonymous and that star nobody, disasters that are attritional and of indifferent interest to the sensation-driven technologies of our image-world? (Nixon 2011, 3)

This question haunts me and motivates me as a scholar and as a person, one among many contemplating uncertain political, economic, and environmental futures. How do we more effectively push back against the spectacular narratives that continually recast heroes and villains, the glorious and the unacceptable, the righteous and the deplorable? And how do we craft new narratives that leave the solutions unsettled and that never collapse in a moment of closure?

The public, media-driven morality play of AIDS in America, featuring Dugas as a seductive demon, took shape and ossified rapidly, despite the best efforts of activists and gay rights groups to tell a different story with human rights at its center. The “final” vindication of Gaetan Dugas almost thirty years later undermines the power of the outbreak narrative since it exposes the monster as a lover, a friend, a flawed person caught in the matrix of an “image-world”. It should also help us look askance at the spectacle, to question its purpose, and to wonder about the complex, subtle events off stage-left, in the dark pool created by the spotlight.

 

Greg Clinton is a PhD candidate in Cultural Studies at Stony Brook University. He is writing a dissertation titled “The Architecture of Safety: Bunkers, Shelters, and Clean Rooms” that analyzes the practices and production of “safe space” in the context of toxic, risky, violent, and porous environments. Greg is managing editor of Somatosphere.

 

Works Cited 

Nixon, Rob. 2011. Slow Violence and the Environmentalism of the Poor. Cambridge, Mass.: Harvard University Press.

Rosenberg, Charles E. 1989. “What Is an Epidemic? AIDS in Historical Perspective.” Daedalus 118 (2): 1–17.

Wald, Priscilla. 1997. “Cultures and Carriers: ‘Typhoid Mary’ and the Science of Social Control.” Social Text, no. 52/53 (October): 181–214. doi:10.2307/466739.

———. 2008. Contagious: Cultures, Carriers, and the Outbreak Narrative. 1 edition. Durham: Duke University Press Books.


One Response to Not Getting Closure: Reflecting on the Vindication of Gaetan Dugas

  1. And then there is the OTHER side, when CDC refuses to admit there IS an epidemic. I am one of at least one million American adults (CDC estimates) to have the disease Myalgic Encephalomyelitis, or M.E. It was identified in the mid-1950s after cluster outbreaks in three different places in the UK. In the mid-1980s there were a series of cluster outbreaks in the US and Canada that fit the description of ME. The problem is, because it was associated also with an outbreak of Epstein-Barr Virus, NIH’s EBV specialist Stephen Straus first identified it as Chronic EBV, then inexplicably (except it was of great benefit to the insurance industry) decided the disease, which impacts more women than men, was psychosomatic. He also came up with a new name in 1986 – “the chronic fatigue syndrome.” That name was adopted by CDC after a meeting in 1987, published in 1988 as the “Holmes definition.” Although professionals at the meeting who knew about ME stated that’s what it was, ME was never considered. Today, however, NIH calls the disease ME/CFS.

    Part of the problem was that ME was never used in the US. At the same time the British adopted ME, the US adopted the name “epidemic neuromyesthenia.” All concerned agreed it was the same disease.

    But somehow I can’t see CDC or NIH accepting a disease name with “epidemic” in it. Even if it is true.

    I believe there has been a new set of cluster outbreaks, again, ignored by CDC.

    If a tree falls in the forest, does it make a sound? If CDC and NIH refuse to recognize an epidemic, has it happened?

Leave a Reply

Your email address will not be published. Required fields are marked *