The Tragedy of Ryan White
Scott W. Stern
November 29, 2024
How politicians used the story of one young patient to neglect the AIDS crisis
A decade ago, in a graduate seminar on “problems” in the history of medicine, my classmates and I began noticing something we came to call “the AIDS epilogue.” A great many books by historians of public health and medicine, it seemed, ended by invoking a condition that had not previously received much focus in their pages: HIV/AIDS. A pathbreaking book on the spread of germ theory in the early 1900s, for instance, concluded with a discussion of how AIDS “has exposed the worst aspects of our modern-day beliefs about the germ.” A magisterial history of late-nineteenth and early-twentieth-century tuberculosis similarly ended with the statement that “AIDS, like tuberculosis,” disproportionately burdens the most vulnerable members of society.
Often, these epilogues flowed sensibly from the text of the books, and many struck us as understandable stabs at timeliness, at relevance, for scholars in a small, oft-overlooked field. Yet several of my classmates and I feared that, as a trend, the phenomenon of “the AIDS epilogue” risked relegating the study of AIDS to a literal afterthought—isolated, shorn of context, emblematic of the broader marginalization of the study of sexually transmitted infections. Worse, it risked reducing AIDS to the position of mere metaphor, a situation that (as the critic Susan Sontag famously argued) contributes to stigmatization, which itself can have real-world medical consequences.
More recently, though, as our distance from the early days of HIV/AIDS has grown, a number of scholars have forcefully wrested the story of AIDS away from the realms of symbol or periphery. From Dan Royles’s history of Black AIDS activists to Karma R. Chávez’s account of efforts at quarantine to Sarah Schulman’s kaleidoscopic study of ACT UP New York, texts drawing on new and innovative archives are rapidly expanding the popular focus beyond the white, gay, cisgender men at the heart of many of the earliest and best-known chronicles of the epidemic—and are relegated to epilogues no longer.
The historian Paul M. Renfro’s excellent new book, The Life and Death of Ryan White: AIDS and Inequality in America, does not quite belong to this trend. Instead, it is part of an equally worthy and important revisionist tradition, alongside works like Richard A. McKay’s stunning retelling of the life and death of Gaëtan Dugas, the infamous “Patient Zero.” Such works seek to deconstruct the dominant myths that were made to stand in for a more complete understanding of the epidemic—and reveal what such narratives have long occluded.
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