On Stigma, Public Health, and Narrative Ethics
by Daniel S. Goldberg, JD, PhD
One of the books I love teaching above all else is Judith Walzer Leavitt’s fabulous Typhoid Mary: Captive to the Public’s Health. This is a spectacular book, and my students regularly confirm this perspective. It is one of those rare texts that manages to satisfy the scholarly standards expected by professional historians of medicine and public health at the same time that it is readable and accessible for non-expert audiences (undergraduates, public health students, etc.).
My pedagogical affect is generally quite genial and affable. I smile often in class, which is in part a function of the fact that I love teaching so much, and in part is because I try to practice compassion and accessibility with my students. I begin most of my courses by sharing a significant amount about myself and my background, in part to build rapport and to try and diminish the educational distance that often exists in the hierarchies between student and teacher.
But because health stigma is a frequent topic of discussion and analysis in all of my teaching, we often find ourselves broaching the subject of Mary Mallon.
When I mention Mary Mallon, I stop smiling almost immediately. I consciously slow my typically rapid-fire pace, and I norm several long moments of silence in the classroom. (Side Note: normed silence can be a VERY powerful teaching tool. More on this in another post).
With the mood thus noticeably changed, I typically say something like the following:
“I enjoy humor and joking around in the class. But about this I am deadly serious. In this class, WE WILL USE HER NAME. Her name was Mary Mallon. The label ‘Typhoid Mary’ was cast upon her largely by mass media of the time. ‘Typhoid Mary’ is a symbol, a representation — it is not Mary Mallon’s name, and it obviously is not a moniker she ever chose for herself.”
We cannot change what happened to Mary Mallon, what was done to her in her life. But we can change the way we narrate her life. And the latter has great moral content. We owe ethical obligations to how we narrate the lived experiences of those who have died. Historical memory has a moral valence. We will not extend the violence done to Mary Mallon in her life through the power of naming.
Thus, in this class, WE WILL USE HER NAME.
I then return to the silence that preceded the explanation, and the class usually sits quietly for a moment or two, processing the point and their own experience with the term “Typhoid Mary.” It is usually an effective pedagogical moment, and it is one that is important to me.
I was thinking of this quite a bit yesterday upon hearing the news that so called “Patient Zero, Gaetan Dugas,” had been “cleared” by researchers pinpointing the origin of HIV/AIDS in the US to the early 1970s:
Worobey’s research shows that by the late 1970s, nearly 7 percent of gay men in New York City were infected with HIV, and nearly 4 percent in San Francisco were infected.
By the time Dugas caught HIV, there were many people infected in the US, maybe even thousands of people, Worobey says. And the HIV sequence taken from Dugas’ blood looks very similar to these other sequences. There’s nothing special about it, Worobey says.
So Dugas couldn’t possibly be Patient Zero. He’s not even close.
“To me, there’s something nice about going back and correcting the record,” he says. “He has been blamed for things that no one should be blamed for.”
I think the story of Gaetan Dugas is analogous in important respects to that of Mary Mallon (and of course members of marginalized groups such as gay men in the late 20th c., or poor, immigrant women in the early 20th c. who were vastly more likely to be stigmatized).
We cannot change what happened to Mr. Dugas in his life, nor in the likely devastating impact to his friends, family, and loved ones of his being labeled as “Patient Zero.” But we can change the way we narrate his life, and we can begin by referring to him exclusively as Gaetan Dugas.
I think a second point that is worth reflection here is the notion that we must draw exclusive and molecular research to ameliorate the stigma that so frequently tracks infectious disease and STIs in particular.
This is problematic not just because it is so wrong on its own terms but also because it perpetuates scientistic epistemic hierarchies that relegate powerful scholarship in ethics, health humanities, and the history of medicine far below that of biomedical and scientific modalities.
We most certainly do not need to wait for molecular assays confirming the presence of HIV in NYC that antedates Mr. Dugas’s adult life in the US to eliminate the stigmatizing language and attitudes applied to Mr. Dugas. There is ample work in the history of HIV/AIDS in North America (see Mirko Grmek’s fantastic scholarship, to name just one of the many excellent and professional contributions to the historiography here). The reasons Mr. Dugas became known as “Patient Zero” have long since been known by the methods of social and cultural historians (of medicine). We could have, and should have, ceased naming Mr. Dugas “Patient Zero” long ago, and however welcome and worthy molecular analyses may be, no such techniques were needed to justify this change.
How we name sick people matters. As Mary Mallon’s case shows beyond a shadow of a doubt, how we name the dead who experienced or even just carried infectious disease, is an especially active axis for stigmatizing attitudes, practices, and beliefs. How we narrate the lived experiences of the dead matters.
His name was Gaetan Dugas.
* This article first appeared on Oct. 27, 2016, in Health: An Interdisciplinary Blog, maintained by the same author.
Daniel S. Goldberg, JD, PhD is trained as an attorney, a historian of medicine, and a public health ethicist. [Full Bio]