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Essay Reviews How to Have Theory in an Epidemic: Cultural Chronicles of AIDS. Paula Treichler. Durham NC: Duke University Press, 1999, pp.496, Cloth US$64.95. ISBN: 0-8223-2286-2; Paperback US$23.95. ISBN: 0-8223-2318-4. In the early 1980s, a new medical phenomenon emerged, an event now widely documented in clinical, social scientific, and epidemiological literature as the ‘discovery of AIDS’. Acquired Immunodeficiency Syndrome, as the complex would soon be named, represented not only a different kind of disease process from a clinical point of view, but also marked a cultural shift in social understanding of sexuality. AIDS achieved popular recognition in an historically unique context: it was first identified among homosexually active men in the first world, who had achieved some political visibility as a ‘gay liberation movement’, but at the same moment a conservative, Christian movement was altering the secularizing and liberalizing trends in Europe and America. The combination of a little understood disease, sex, death, and the clash of political values on an increasingly global scale made AIDS an ongoingly popular media topic, covered in political, medical, and, as educational efforts sought to humanize those affected, entertainment columns of newspapers. The medical disciplines were grappling with the need for new theories and methods for dealing with a retrovirus, and epidemiology, itself undergoing a crisis about its status among the biomedical disciplines, was more than usually dependent on the more qualitative social scientific methods. The research paradigms for describing and explaining human sexuality were undergoing massive changes as ‘social construction theory’ and innovations in understanding ‘new social movements’, including those concerned with sexuality, emerged on the academic horizon. Perhaps unique among social phenomena, individual respondents and media consumers considered themselves to be as expert on sexuality as the researchers. Thus, while academic research on sexuality was confident that sexual behaviour and identity were quite fluid, those whom researchers questioned in their studies, and those who read popular versions of the studies in the media, were more convinced that sexuality was fixed and unchangeable. Few medical writers, much less political analysts, were really in a position to interpret these complex scientific and cultural events. The biomedical disciplines, but especially epidemiology, were in unprecedented communication with non-specialist readers and viewers of the world’s news media. Under early pressure to quickly get a handle on—and explain—what would in short order prove not to be a transient crisis but a new order of disease spread and policy reaction, reporting of epidemiological and clinical findings were, in a brutal and fatal way, ‘dumbed down’ for a public presumed to be unable to understand the complexities of medicine, human sexuality and health policy. This is the context in which Professor Paula Treichler began to write the essays that now comprise her collection How to Have Theory in an Epidemic. As a professor of communications studies who worked in close collaboration with the medical faculty of the University of Illinois, Treichler had respect and sympathy
toward, but also the disciplinary distance from biomedicine to realize that major cultural disjunction was occurring as the science of AIDS was rewritten for a lay audience. Significantly, Treichler was involved as an observer and activist in local and international AIDS policy forums, and so was able early in the epidemic to get a feel for the results of the harried and often bizarre representation of the new epidemic. Unlike many media researchers, Treichler did not believe that there was a unidirectional relationship between the knowledge of science and the ignorance of the public: instead, she argues—following the past 30 years of research in the social study of science—that scientists mix their expert understanding and their own ‘lay impressions’ of the wide-ranging phenomenon that they study. For example, in the sentinel and widely cited early essay, ‘AIDS, Homophobia, and Biomedical Discourse: An Epidemic of Signification’, Treichler argues that: ‘AIDS is not merely an invented label, provided to us by science and scientific naming practices, for a clear-cut disease entity caused by a virus. Rather, the very nature of AIDS is constructed through language and in particular through the discourses of medicine and science; this construction is “true” or “real” only in certain specific ways—for example, insofar as it successfully guides research or facilitates clinical control over the illness.’ Readers who are unfamiliar with the technical jargon of cultural studies might be more impressed—and perhaps affronted—by the notion that scientific truths are constructions. However, it is important to recognize that Treichler is not suggesting an anti-scientific or relativist position. Rather, she works from the basic findings of ethnographic study of laboratory and clinical practice (for example, that of Steven Woolgar or Karin Knorr-Cetina); that science, because it works on the principle of falsifiability, only ever has provisional and working ‘truths’, however certain is the voice that articulates these findings to the lay public. Thus, as she says above, science is ‘true’ and an understanding of a disease ‘real’ when researchers are able to make practical good of their conceptions. Analysing the early scientific discussion of AIDS, Treichler is able to show the corollary result of the scientific method for constituting provisional truths. When scientific frames prove impractical for explanation and control, there is an increase in the use of non-scientific rationales and explanations, and, in a critical case like the first decade of the AIDS epidemic, these become intermingled with fragmentary scientific truths to produce misleading accounts of the ‘real’ disease and the actual state of scientific understanding. In the same essay, she provides a brilliant analysis of this kind of intermingled thinking gone awry, and in a way that, readers will recall, had a long-lasting effect on the scientific and popular conceptualization of the potential for ‘heterosexual’ transmission of HIV. She takes aim at an article in Discover magazine (one of many like it to appear in popular scientific journals), that explains ‘Why AIDS is likely to remain largely a gay disease’. The graphics accompanying the Discover article appear objective
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and scientific—textbook-line illustrations of male and female reproduction anatomy accompanied by ‘blow-up’ renderings of the types of tissue that line the walls of each. Using imagery that, Treichler establishes, echoes from 19th century understanding of reproduction, the article tries to convince readers that the ‘vulnerable rectum’ and ‘fragile (male) urethra’ do not stand a chance of providing body armour against HIV, while the ‘rugged vagina’ will repel virus because it is ‘designed to withstand the trauma of intercourse as well as childbirth’. Treichler notes the way in which the combination of rectum/penis is constituted as dangerous and unnatural while penile-vaginal intercourse goes according to a natural design. In addition, she notes that the text makes much of the prevalence of penile-anal intercourse between men while ignoring its significance in the sexual lives of many heterosexually active men and women. While it may seem an easy task all these years later to make fun of an article like this one, Treichler’s work—whether on heterosexual transmission, the patterns of disease in African nations, or campaigns for condom use—links the unscientific assumptions propounded in popular scientific accounts with specific policy outcomes. Convinced that vaginal intercourse was its own protection, many women had difficulty understanding that they might well become infected even if they did not engage in anal intercourse. (Interviewers heard this time and again, ‘I don’t have sex there’, a fatal misperception related to the reinforcing effect of popular science on already-existing cultural taboos about anal sex.) In the case of African educational policy and extension of care, Treichler shows that the early mystification of heterosexual transmission (Africans were accused of engaging in bizarre practices that neutralized the protective capacity of the ‘rugged vagina’), combined with claims that African political and health systems were too dysfunctional to respond to the epidemic, delayed response in Africa until the epidemic had reached truly unmanageable proportions. In another analysis of condom advocacy, Treichler begins the enormous task of uncovering the social history of condom use and cultural beliefs about condoms. Here, she suggests that it is not individual recalcitrance or recidivism or lack of knowledge but the pervasive negative association of condoms with immorality, lack of relationship commitment, and a sense of being repressed that makes it so difficult for American men to inaugurate and sustain condom use. Treichler, currently training students pursuing a joint MD and PhD in Cultural Studies, is one of the few scholars of the last 20 years to combine astute and sympathetic understanding of science as practised, with analysis of the actual consequences of the translation of science in the media and as policy. Her analyses are specific, lively, and enlightening, and also connected to the live issues in the HIV pandemic. As clinical or social scientists, we are always embarrassed to discover our own peculiar biases. Rather than aiming for a state of ideological purity, Treichler suggests that we view the imbrication of science and nonscience as an ongoing cultural process that is intrinsic to the production of a better understanding of human affairs. It is not in achieving value-neutral language that we come closer to the truth, but through understanding how and when we transform science into culture, culture into science. CINDY PATTON Winship Distinguished Research Professor, Graduate Institute of Liberal Arts, S-402 Callaway Building, Emory University, Atlanta Ga 30322, USA
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Smearing the Queer: Medical Bias in the Health Care of Gay Men. Michael Scarce. Binghampton, NY: Harrington Park Press, 1999, pp.183, US$19.95. ISBN: 1560239263. In Smearing the Queer Michael Scarce (see extract pp.498–99) shows how prejudice about homosexuality leads to biases in medical research and public health work. Scarce offers a critique that draws on the social constructionist method that views scientific evidence not as a representation of an underlying truth—a rendering of the world as it is—but as a construction that reflects social structures, values, and the vicissitudes of social processes.1 The title’s metaphor ‘smearing’, refers to two main areas of this exploration. ‘Smearing’ recalls the medical examination of the gay person, as in the smearing of a preparation on a slide for microscopic examination, as well as the slander and vilification that can come as a result of such examination. The cover art by Linda Howard eerily conveys the biomedical reduction of the gay man’s person by depicting his headless body being probed by 14 disembodied hands. The book is an amalgam of styles and topics: a collection of essays, satire and even poetry through which Scarce explores how social prejudices are embedded in the health sciences’ approach to gay men’s health. He examines the definition of medical conditions, such as AIDS and Gay Bowel Syndrome; public health approaches to prevention of sexually transmitted diseases; the development of safe sex technologies, such as the female condom and microbicides; and screening for the prevention of anal cancer. In each of these areas, he shows how antigay and heterosexist biases result in limited, often damaging, understanding of gay men’s health. The premise of this analysis is that widespread homophobia (negative attitudes toward gay men and lesbians) and heterosexism (a view that negates forms of sexuality, affection, or relationships that are not heterosexual) colour medical understanding of gay men’s health. In one elaborate analysis, Scarce chronicles the construction of a medical disorder labelled, ‘Gay Bowel Syndrome,’ by Kazal et al. in 1976, and popularized one year later in an article by Sohn and Robilotti in the American Journal of Gastroenterology.2,3 The term refers to a variety of anorectal and enterological conditions, including, for example, amoebiasis, shigellosis and hepatitis, protocolitides, venereal disease and anal warts. The characterization of these conditions as a syndrome seems to have little or no biological or physiological rationale. Instead, researchers have been influenced by the observation that these conditions present in gay men, which, as a social category, imparted a special medical meaning to these otherwise common and distinct disorders and symptoms. Such categorization, similar to the early categorization of AIDS as Gay Related Immune Disorder, is rife with social rather than medical meaning. It characterizes the gay man’s body as inherently pathological, ‘marking its perverse nature and menace to society for all to behold’ (p.22), and renders gay men, ‘physiological foreigners and aliens—tropical, animalistic, primitive, and unsanitary’ (p.30). Scarce makes a convincing argument that the term’s social meaning and impact lie outside medicine. Not surprisingly, this medical construct has become ammunition for repressive social forces that view homosexuality itself as a moral disorder. The term was adopted by the popular media, including major publications like Time Magazine and the Chicago Tribune, and has been used to vilify gay men, marking them for discrimination,
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and justifying the view that they are morally inferior. The term, and medical writings about it, provided antigay political groups with pseudo-scientific evidence for promoting discrimination against gay men. For example, when Cracker Barrel, a restaurant chain in the south of the US, barred gay men from employment, it cited their risk as carriers of enteric diseases as justification. In a discussion of medical technologies Scarce shows how the same biases lead to neglect of gay men’s health needs. His analysis of the development of safe sex technologies is particularly striking. It is another example of the overriding importance of values in public health, where heterosexism and sex-phobia directed medical conceptions of what are acceptable or desirable prevention techniques. It is striking to note that the US Government’s Food and Drug Administration has never actually tested or approved the use of condoms for anal sex, in part because anal sex among men is still criminalized in many states. But it is not surprising in the context of the social analysis to discover that better prevention techniques, such as a barrier device for use by the receptive partner in anal intercourse similar to the female condom, or rectal microbicides that would allow condomless anal intercourse, have not been developed for gay men. Even existing technologies, such as the female condom, which have been developed and marketed for use by women, have not been adopted or promoted for use by gay men even though there is evidence that they may be effective. Scarce demands that health institutions develop technologies with gay men in mind. He goes far beyond familiar calls for cultural sensitivity and respect, advocating techniques that accommodate, even promote, safe but pleasurable anal intercourse among gay men. He demands that public health cater to gay men’s desires for sex without barriers for no other reason than that it is self-affirming. Describing an anonymous sexual encounter in a poem he explains the desire for ‘unsheathed’ intercourse, ‘because I wanted to join him/enjoy him, join with him, /with nothing between us’ (p.83). His demand to accommodate gay men’s sexual culture in the development of safe sex technologies is bold and unapologetic; it has a strong impact, demonstrating how wide the gap is between these demands and the social attitudes about sex and sexuality that guide public health efforts. Scarce’s work reveals a conflicted relationship between gay men and the health sciences. While offering a damning condemnation of public health, he also evidences respect for health science and the wish for greater attention to the health needs of gay men. When he describes how homophobia and heterosexism have led to the neglect of potentially life-saving research on and screening for anal cancer, for which gay men are at increased risk, he expresses a deep anger at medical researchers and urges more dedication to this health problem. This difficult alliance between gay men and medical institutions conveys a plight similar to that of other groups e.g. ethnic/ racial minorities, women, people living in poverty, and residents of developing countries. Unfortunately, Scarce does not search sufficiently for connections between the health concerns of gay men and that of other disenfranchised groups. Members of disenfranchised groups share a dependence on health sciences and industries. Yet they remain cultural foreigners, and are often hurt because of bias and discrimination, or neglected because solutions to their problems promise little profit or scientific
acclaim. For example, proper cost-effective treatment of human African trypanosomiasis is lacking in part because pharmaceutical companies have not identified it as a priority.4 The experience of HIV prevention among African Americans in the shadow of the Tuskegee experiments is another example, which is very relevant to gay men’s experience.5 Such linkage by social analysts is important because it may promote collaboration among diverse groups, lead to necessary politicization of health problems, and increase gains for all. The legacy of ACT UP, a gay AIDS advocacy group that impacted AIDS research, treatment and prevention in diverse populations and throughout the world, is one promising example. Scarce’s analysis disappoints in several other ways. Despite his aim to release the discourse of gay men’s health from the predominance of AIDS, the book strays only slightly to consider other sexual issues, and it continues a tradition of reducing gay men’s health to sex-related concerns. It is ironic, and perhaps indicative of how insidious and subtle are social biases, that a book that correctly criticizes medical constructions as a reflection of a prejudicial view of the gay body, in turn portrays an image of the gay man that is so concordant with stigma. Absent from Scarce’s portrait is a wide range of health concerns, and health biases, that affect gay men (and other sexual minorities). Among these concerns are the impact of prejudice and discrimination on mental health and suicide, violence, substance use, parenting and child care, health education, and health care access and utilization, as well as the salutogenic effects of community affiliation, spirituality, and personal resilience.6,7 Similarly narrow is the book’s intellectual heritage. Scarce’s work is informed by recent social critiques of the AIDS epidemic, including important work by Paula Treichler and Steven Epstein, but reliance on a broader foundation may have expanded the book’s perspective. Missing are links with important critiques of biomedicine,8–11 public health,12–14 and the impact of socioeconomic structures,15 and social stress on disease.16–19 Also missing is a critical understanding of the book’s subject— ‘gay men’—and a consideration of the variability therein.20–22 These issues significantly limit the book’s relevance to primarily sexual health concerns of a specific gay male culture. Nevertheless, Scarce’s analysis provides an illuminating critical exploration that needs to continue as wider areas of lesbian, gay, bisexual and transgender health begin to be addressed in public health.
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Bowel Syndrome: Clinico-pathologic correlation in 260 cases. Ann Clin Lab Sci 1976;6:185. 3 Sohn N, Robilotti JG. The Gay Bowel Syndrome: A review of colonic
and rectal conditions in 200 male homosexuals. Ann J Gastroenterol 1977;67:478. 4 Keiser J, Burri C, Stich A. New drugs for the treatment of human
African trypanosomiasis: research and development. Parasitol Today 2001;17:42–49. 5 Thomas SB, Quin SC. The Tuskegee syphilis study, 1932 to 1972:
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6 Meyer IH. Why lesbian gay, bisexual, and transgender public health?
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Waxler NE. Social Contexts of Health, Illness, & Patient Care. New York: Cambridge University Press, 1981. 11 Sontag S. Illness as Metaphor. New York: Farrar, Straus and Giroux, 1977. 12 Beaglehole R, Bonita R. Public Health at the Crossroads: Achievements and
Prospects. New York: Cambridge University Press, 1997. 13 Krieger N. Epidemiology and the web of causation: has anyone seen
the spider? Soc Sci Med 1994;39:887–903. 14 Wing S. Whose epidemiology, whose health? Int J Health Serv 1998;
28:241–52. 15 Link BG, Phelan JC. Social conditions as fundamental causes of
disease. J Health Soc Behav 1995; Extra Issue:80–94. 16 Pearlin LI. The stress process revisited: Reflections on concepts and
their interrelationships. In: Aneshensel CS, Phelan JC (eds). Handbook of the Sociology of Mental Health. New York: Kluwer Academic/Plenum Publishers, 1999, pp.395–415.
20 Vance C. Social construction theory: Problems in the history of
sexuality. In: Van Kooten Niekerk A, Van der Meer T (eds). Homosexuality, Which Homosexuality? Amsterdam: An Dekker/Schorer, 1989, pp.13–34. 21 Kitzinger C. Social constructionism: Implications for lesbian and gay
psychology. In: D’Augelli AR, Patterson CJ (eds). Lesbian, Gay, and Bisexual Identities Over the Lifespan. New York: Oxford University Press, 1995, pp.136–61. 22 Eliason MJ. Identity formation for lesbian, bisexual, and gay persons:
Beyond a ‘minoritizing’ view. J Homosexu 1996;30:31–58.
ILAN H MEYER Columbia University, Mailman School of Public Health, Division of Sociomedical Sciences, Center for Lesbian, Gay, Bisexual and Transgender Health, 600 West 168th Street, New York, NY, USA E-mail:
[email protected]
