This article is part of the following series: Chronic living
The introduction of effective combination antiretroviral therapy for HIV disease in 1996 was commonly narrated as a major event that transformed HIV from an inevitable death sentence into a ‘chronic manageable illness’ – at least for those populations in wealthier countries granted socially and economically affordable access to the new treatments, not to mention the relevant clinical infrastructures to monitor their effectiveness such as regular viral load testing. Sociologists cast this moment as the beginning of the normalization of responses to HIV/AIDS, in which activist engagements with HIV science on the part of affected communities resolved into the figure of the patient, or the passive consumer of medical goods (Rosenbrock et al. 2000). While the reframing of HIV as a chronic manageable illness can certainly be understood in terms of normalization, in this post I argue this narrative overlooks the sense in which the ‘Protease Moment’ (Rofes 2015) was predicated upon and instigated various forms of labour on the part of people living with HIV/AIDS that entailed experimentation with drugs and their diverse affordances.
Melinda Cooper and Catherine Waldby have coined the term ‘clinical labour’ to account for forms of embodied labour that are central to biomedical innovation but ‘rarely considered as labour’ – such as participation in clinical trials (Cooper and Waldby 2014). From this perspective, the mass participation in clinical research to test the efficacy and affordances of HIV antiretroviral drugs on the part of affected communities, not to mention the contestation of clinical trial protocols and regulatory practices on the part of community treatment activists, documented so well by Steven Epstein (1996), are surely part of prehistory of the protease moment. But Cooper and Waldby’s provocation can be taken further if we consider the forms of labour that take place outside the official frameworks of clinical research but tacitly inform its propositions and hypotheses: what I call experimental labour. As John Dewey remarks of thinking, experimental labour is precipitated when ‘life is so hemmed in and constricted that [one] cannot directly carry through a course of action to victorious consummation,’ (2004 : 80; see Savransky 2017). It aims towards ‘the construction of a new empirical situation in which objects are differently related to one another’ and in which a course of action becomes newly possible (Dewey 2008 : 16).
The Protease Moment sparked a wave of interest, concern, anxiety, and intrigue the use of ‘drug cocktails’ on the part of gay men, as I have discussed elsewhere (Race 2009, Race 2021a). Emerging at first as a shorthand term for combination therapy involving protease inhibitors, the phrase ‘the new drug cocktails’ soon extended in popular parlance to encompass a range of licit and illicit drug combinations that were popular within urban gay subcultures through a kind of metaphorical bracket creep that seemed to cathect anxieties about the experimental status of these new treatment regimes and the various possibilities – sexual, social and epidemiological – to which they were giving rise. Thus an article appearing in The Village Voice in 1999 entitled “Higher and Higher: Drug Cocktails—Pleasures, Risks and Reasons” introduces us to Dormil, an HIV-positive gay man who “takes four different AIDS medications, including AZT. For recreation, he goes to dance clubs where he gets high on a nocturnal medley of Ecstasy, Special K, and crystal methamphetamine”(Owen 1999). “It’s therapeutic. It’s a stress-reliever,” Dormil is quoted as saying. “It allows me to accept the fact of my disease and get on with my life.” Dormil’s main narrative function is to serve as a gateway informant, an individual case study devised to give a human face to a sensationalized scene of illicit, collective experimentation:
This weekend, and every weekend on dance floors across the city, thousands of teeth-grinding subjects like Dormil engage in an underground research project. Amid flashing lights and pounding music, untutored freelance pharmacologists conduct experiments on their own bodies to determine what happens when one consumes a bewildering array of pills and powders in the confined and humid setting of a nightclub. The results are not always pretty (Owen 1999).
With an anxious but nonetheless excited focus on the complexities of drug effects, “Higher and Higher” repeatedly returns to the fuzzy distinction between therapeutic and recreational logics of drug consumption. “It’s crazy! . . . the entire New York club scene revolves around drug cocktails,” a “veteran drug dealer” is quoted exclaiming. But where some of the informants interviewed for the article attribute these “underground research experiments” to consumers’ desires to escape from reality, others describe certain illicit combinations as capable of delivering real benefits when safely self-administered, including the capacity to face the new realities of chronic living.
Disco polypharmacy involves risk. Nobody knows how safe some of these mixtures really are. Some say that not necessarily all combinations are bad for you—for instance, partygoers claim that swallowing Ecstasy followed by LSD (known as “candy flipping”) can be extremely therapeutic (Owen 1999).
In a move that departs refreshingly from the moralistic tenor of many similar journalistic treatments of the topic, the article wraps up with a practical set of guidelines on “Doing Polydrugs Safely” complete with an informative “Polydrug Glossary.” This apparent vote of confidence or at least interest in the productive potential of these underground experiments could be considered prescient, given that today – two decades after this article appeared – most of the drugs it discusses are being investigated in largescale clinical trials for therapeutic purposes. Ecstasy, marijuana, LSD and ketamine are among the drugs being tested today to address conditions such as Post-Traumatic Stress Disorder, anxiety and depression.
The frame of collective experimentation might be put to further use, troubling familiar narratives that frame the recent biomedical turn in HIV prevention as a straightforward imposition of biomedical authority and technoscientific mandates on unwitting communities and populations. It does so by drawing out the ways in which community mobilization, (sub)cultural innovation and collective self-fashioning have participated in the shaping and transformation of HIV ontologies. Indeed, a full decade before clinical researchers ‘discovered’ that the antiretroviral suppression of viral load eliminated the risk of HIV transmission, gay men were trialling this proposition and putting it into practice. As early as 2001 it became apparent to Australian social scientists that some HIV-positive gay men were incorporating the results of viral load testing into their sexual practices and prevention repertoires, dispensing with condoms in certain circumstances on the basis of having an undetectable viral load (Rosengarten et al. 2000; Race 2003). These underground experiments took place a full decade before clinical trials finally corroborated the reliability of these vernacular hypotheses, preceding the emergence of u = u as a popular slogan in HIV prevention discourse by some 16 years.
Similarly, the evaluation and approval of PREP was most probably informed by the calculated risk-taking of sexual actors undergoing Post-Exposure Prophylaxis. The sexual experiments of those receiving PEP provided a vernacular proof of concept that research scientists proceeded to appropriate and formalize as a basis for PrEP trial protocols, to test whether certain antiretroviral combinations might protect HIV-negative individuals from becoming infected despite their ongoing exposure to risk.
The dominant narrative of HIV normalization which generally used to understand living with HIV- as-chronic-manageable-illness overlooks the active participation of affected communities in the shaping and application of biomedical strategies and their possibilities. It could even be said to expropriate the labour of experimental subjects and cast it as the exploitable property of biomedicine and pharmaceutical companies. This in turn serves to buttress the monopoly of biomedical authority over public health policy at the very moment that antiretroviral and diagnostic technologies are becoming subject to necessarily heterogenous forms of socialization.
By contrast, the frame of experimental labour acknowledges the productive effects and potential value of people’s vernacular experiments when living with chronic conditions – experiments that, in the case of HIV, have occurred prior to – and may very well have substantially informed – the hypotheses and designs of official clinical trials (for a fuller discussion see Race 2021b). It makes it possible to tell an alternative story: of HIV biomedical prevention from below.
Kane Race is Professor of Gender and Cultural Studies at the University of Sydney, Australia, author of The Gay Science: Intimate Experiments with the Problem of HIV (Routledge, 2017), and Pleasure Consuming Medicine: the queer politics of drugs (Duke UP, 2009), and co-author (with Gay Hawkins and Emily Potter) of Plastic water: The Social and Material Life of Bottled Water (MIT Press, 2015).
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
Cooper, M., & Waldby, C. (2014). Clinical Labour: Human Research Subjects and Tissue Donors in the Global Bioeconomy. Duke University Press.
Dewey, J. (2004 ). Reconstruction in Philosophy.Mineola, NY: Dover Publications.
Dewey, J. (2008 ). The Quest for Certainty:The later works 1925–1953, Vol. 4. Carbondale, IL: Southern Illinois University Press.
Owen, Frank (1999) “Higher and Higher: Drug Cocktails—Pleasures, Risks and Reasons,” The Village Voice, July 21.
Race, K. (2003). Revaluation of risk among gay men. AIDS Education and Prevention, 15(4: Special issue), 369-381.
Race, K. (2009). Pleasure consuming medicine: The queer politics of drugs. Duke University Press.
Race, K. (2021a). A lifetime of drugs. In Longterm: Essays on Queer Commitment, ed. L. Wallace & S. Herring, Duke University Press.
Race, K. (2021b). The beatification of the clinic: Biomedical prevention ‘from below’. In Remaking HIV prevention in the 21stcentury, ed. S. Kippax, R. Parker, P. Aggleton, S. Bernays & A. Bourne. Springer
Rofes, E. (2015). Dry Bones Breathe: Gay men creating post-AIDS identities and cultures. Routledge.
Rosenbrock, R., Dubois-Arber, F., Moers, M., Pinell, P., Schaeffer, D., & Setbon, M. (2000). The normalization of AIDS in Western European countries. Social Science & Medicine, 50(11), 1607-1629.
Rosengarten, M., Race, K., & Kippax, S. (2000). “Touch Wood, Everything Will Be Ok”: Gay Men’s Understandings of Clinical Markers in Sexual Practice.National Centre in HIV Social Research, University of New South Wales.
Savransky, M. (2017). 2 The wager of an unfinished present: notes on speculative pragmatism. In Speculative Research (pp. 43-56). Routledge.
- Internet-Based Access to PrEP in the U.S.: A “Critically Applied” Approach and the Symbolic Effects of a Clinical-Technological Assemblage
- PrEP at the Margins: Towards a Critically Applied Anthropology of Nordic PrEP Access
- Crafting a ‘critically-applied’ PrEP collaboration in Memphis
- PrEP at the After/Party: The ‘Post-AIDS’ Politics of Frank Ocean’s “PrEP+”
- Understated, not overlooked