These two books are widely different in style and in focus, but together they exemplify twin polarities that have marked writing about HIV/AIDS almost since the start. On the one hand we have Wendee Wechsberg’s reminiscence-based book about the early days of HIV/AIDS, primarily in the United States. This is a tradition of writing that goes back to Randy Shilts’ And the Band Played On (1987) or to the oral history projects, for example in San Francisco. On the other hand, there is Lukas Engelmann’s heavily theoretical study of the visual aspects of HIV/AIDS, and in particular AIDS atlases, a book which is rooted in the historiography of the visual in medicine and of cartography, and the ways in which this has been theorised. Here we have a tradition of theory driven social research that also marked the response to the epidemic from the start, for example in the work of Paula Treichler and Douglas Crimp.
I have located Wechsberg’s book within the oral history tradition, but in fact it is a rather strange type of oral history: twenty-nine chapters of reminiscence, most of which have been written by protagonists recalling their own early days of involvement in the AIDS issue. In contrast, some chapters are written by others, recalling the contribution of people who have died, or who perhaps did not wish to write themselves. In this category is a chapter by Warren W. Hewitt Jr about Dr Beny Primm, a now deceased founder of black-run methadone maintenance programmes in New York who played a major role at the city and federal level in the response to drugs and HIV. There is also a chapter by Mary Guinan about the failure to recognise the contribution of Dr Francoise Barre-Sinoussi, the French scientist whose work with Luc Montagnier in the discovery of the virus was overshadowed by the claims of Robert Gallo and the National Institutes of Health that it had been his discovery. These were claims ultimately settled through a law suit and in 2008 by the award of the Nobel prize in Physiology or Medicine for the joint discovery of the AIDS virus to Barre-Sinoussi and Montagnier.
The other chapters are variable. Some tell a familiar story, but still have the power to shock. For example, there is Rayford Kytle’s chapter, ‘Finding my calling in Hell: my journey through the early years of AIDS’, in which recalls his life in the hedonistic 1970s in New York and the subsequent arrival of HIV/AIDS when both he and his lover, who subsequently died, discovered they were HIV positive. ‘Sometimes I would try to contact old friends I hadn’t been in touch with for a while,’ he writes (p. 110), ‘and I’d find out they had died and no one had let me know. In summer 1978, George and I had been in a small house on the ocean at The Lines. There were eight of us. All died of AIDS except me.’ (p.110).
There is discussion of an early needle stick infection in nursing; the role of the black churches; the role of research; research on drug users and the initial opposition to harm-reduction strategies such as syringe exchange. Wechsberg’s own background is in gender, addiction treatment and HIV prevention, with a history that dates back to the late 1970s, so the collection has a tendency to focus on those with experience in these fields; for example, the drug researcher Don Des Jarlais, who writes strikingly about the interviews that he conducted with drug users dying of AIDS. There is much to take from these chapters. Others are disappointing. For example, the only chapter by a British protagonist is from the psychologist Lorraine Sherr, a short piece that could have been expanded to include more on the developing role of psychology and of counselling in the response to the epidemic in Britain. The non-US side of that response is also lacking in the book. Apart from the Sherr piece, there is a chapter about Uganda and one on the Junkiebonden (drug users union) in Amsterdam, but this is written by Samuel Friedman, an American researcher who worked with drug users there, not by a Netherlands researcher.
The book’s editor does not tell us how the participants were selected, what brief they were given, whether there were standard questions they were asked to consider and how the chapters were to be structured. The standard parameters of an oral history study are lacking, and the reader has no idea what principles of selection were applied to participants, who was asked to be involved and what they were asked to do. Referencing of the chapters is not standardised and looks to be mostly what participants have provided themselves, with no location in AIDS historiography.
Lukas Engelmann’s study could hardly be more of a contrast. His book examines how the history of AIDS has been visualised in different versions of AIDS atlases produced between 1986 and 2008. The first atlas Engelmann dissects was produced by Charles Farthing and colleagues in 1986, early on in the epidemic. Farthing was a research registrar at St Stephen’s Hospital (Westminster Hospital in the present day), who became a high profile doctor in the early years of AIDS. A second series was published in the United States in Philadelphia with the chief editor Alvin E. Friedman-Kien, an expert on KS (Kaposi’s Sarcoma). A third series began in the mid-1990s, edited by Donna Mildvan. The last version of this series, the International Atlas of AIDS, appeared in 2008.
Engelman’s argument also has a chronology. He traces how the visualisation of AIDS began with photographs, then moved to maps, until latterly representations of the virus itself have predominated. He sees these three genres as folding into three ways of representing epidemics. Photography shows the person affected by the disease and asks who is at risk, thus also identifying who is a threat to others (the demographics of risk). This brought a representation of where the epidemic was, where it originated and where it was heading. Maps located the epidemic and looked at how the picture of AIDS differed from place to place on the ground. Virus representations were the final picture that could approach the essence of AIDS ‘without the distractions of embodiments and local variation’ (p. 219).
Following Foucault, he sees these visualisations as forms of embodying disease in specific spheres. The first is the world of the clinic, with the clinical gaze captured in photographs. Maps focus on where the disease is and so provide a meaningful picture for epidemiological intervention and public health. This was a global picture of the epidemic, which constructed a new spatial order for AIDS. The image of the virus rather represents a scientific embodiment of the disease, a laboratory abstract, meaningful to microbiologists as tangible agent of disease. These images also had a wider significance in leaving what he calls a ‘strange representation’ of the epidemic. ‘A picture displaced from affected bodies, immune to social unrest and eerily distilled from the worldly appearances of AIDS as a crisis […] it provided a vision that never had a temporal dimension and that never became an archive’ (p. 35).
Engelmann sees the latest version of the AIDS atlas as a catalogue of the many theoretical possibilities of visualising an epidemic. As a repository of possibilities for thinking about and seeing AIDS, the latest atlas does not claim the end of AIDS nor produce a positivist reading of the triumph of scientific imagery.
The book is based on Engelmann’s German PhD thesis and so has been translated into English, a process that has not improved clarity of expression at many points, especially in such a densely argued, theorised and heavily contextualised text. Nevertheless, the argument is an interesting one, although the author could perhaps have written more about the significance of the production modes of the different series, and of the move from the UK to the US.
These two books are very different in focus, in style and in content, and yet they illustrate how these very different aspects of the same subject, HIV/AIDS, remain essential to social and historical research on the virus. Despite its deficiencies, its US-centric-ness, its lack of structure and analysis, Wechsberg’s collection contains striking insights and memories that still have the power to shock. Engelmann’s book, on the other hand, demonstrates the power, but also the difficulties, of academic analysis. Long may both these traditions continue.
