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Elissa R. Henken - Review of Diane Goldstein, Once Upon a Virus: AIDS Legends and Vernacular Risk Perception

Abstract

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Diane Goldstein is always worth paying attention to on matters of medicine and legend. Many of us already know it; in the delay it has taken to publish reviews, her book already has been cited in papers and articles. This book should bring her work to a wider audience and bring different audiences closer together.

Goldstein takes on the very large topic of the relationship of AIDS folklore and health-risk assessment, but does so through the very specific examples of folklore and public health situations in Newfoundland. In a model of using case studies to illuminate larger matters, Goldstein takes us from the general to the particular and back to a wider whole. An initial discussion of disease-related folklore and cultural constructions of disease lays out essential background information on the various components of her topic--on folklore, AIDS, Newfoundland, public health--and establishes cultural particulars, such as the bases of distrust in Newfoundland for outside political and medical authorities. Goldstein then takes a chapter to concentrate on contemporary legends, illustrating their functions as expressions of worldview, as responses to the extraordinary, and as agents in directing behavior. The next chapter concentrates on public health, discussing educational initiatives, expert versus vernacular risk-assessment and management, and the role of narrative in organizing experience. Goldstein then focuses on four case studies--on AIDS origin narratives, on the "Welcome to the World of AIDS" cluster of legends, on the official and communal treatment of one individual’s nondisclosure of his HIV status, and on legends of HIV-infected needles. Each case adds important concepts to her overall argument--concepts of cultural otherness, vulnerability, risk perception, ostension, and resistance to intrusion by medical authorities. Each of these chapters is in itself a complete and intriguing study, and together they build convincingly to a final chapter that provides a thoughtful discussion of culturally based, vernacular understandings of disease and risk, and the lessons that public health workers should take from them.

In the separate sections of the book as well as in the overall structure, Goldstein carefully and deliberately makes her case. At each step, she lays out the necessary background information (concepts, analogies, socio-historic contexts, ethnography, focused reviews of the literature), details her specific local examples, and connects them to broader concerns. Whenever necessary, she pauses to explain concepts--whether contagious magic, ostension, or Health Belief Models--and then shows how they work in practice. From the beginning she gains the reader’s trust through the clarity of her explanations and through her command of history, medical data, and the relevant literature in both folklore and medicine. Goldstein expertly brings together the worlds of folklore and medicine. Though necessarily concentrating sometimes on one, sometimes on the other, she keeps them always connected so that the reader can see how they link to and affect each other. She skillfully negotiates and translates the language and concepts from one discipline to the other. Goldstein draws on a wide range of sources, intertwining medical, media, popular, and folk narratives. Enormous collecting efforts by her and her students have provided a wealth of examples. Throughout, Goldstein shows a great respect for her informants. This is the attitude we would expect of a folklorist, but she pointedly encourages it in health workers so that they may recognize other sources of valuable expertise and authority.

Goldstein does exemplary and convincing work in interpreting the texts in their immediate contexts--not just in Newfoundland in general, but in particular communities and at particular stages of HIV awareness. As many of us know, it is all too easy to assume when we recognize a story--especially a contemporary legend, which moves about so readily and which we scholars often share without the accompanying contexts--that it has the same meaning and usage in different places. Goldstein provides a useful reminder of the importance of seeing the differences and not just the similarities in our comparativist work if we truly wish to understand cultural expression. A number of times while reading, I found myself thinking, "That’s not right; that’s not the way it is in what I’ve collected," but after remembering that Goldstein is discussing a Newfoundland community, not Georgia teenagers, thinking afresh about both Georgia meanings and more widespread meanings.

Throughout the book, Goldstein maintains an admirable balance of local detail and large picture, of vernacular and medical, of data and theoretical framework. She shows us fascinating pieces and builds them into a whole with broader implications for public health policy.

This is an excellent, strong book--thoughtful, readable, important--addressing folklorists, health workers, and anybody else interested in how people think about and respond to matters of health and disease.

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[Review length: 765 words • Review posted on February 15, 2007]