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NONFICTION PERSPECTIVES ON AIDS

by Caitlin Burke

Buy And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts
Buy A Disease of Society: Cultural and Institutional Responses to AIDS, edited by Dorothy Nelkin, David P. Willis, and Scott V. Parris
Buy My Own Country: A Doctor's Story, by Abraham Verghese
Buy Impure Science: Aids, Activism, and the Politics of Knowledge, by Steven Epstein

Acquired immune deficiency syndrome has struck an unimaginable breadth of social chords in the decade and a half since it was identified in the United States. Churning up images of lepers, religious judgement, and the threat of a invincible virus in a world made complacent by the age of antibiotics, practically no aspect of AIDS can be discussed without strong emotions, ranging from righteousness to despair. Over the years, however, books have emerged that try to make sense of the AIDS epidemic within a cultural context, and they represent a variety of agenda, based at least in part on when they were published.

The medical and scientific aspects of AIDS are discussed in nearly all of the recent books about emerging viruses, including Virus Hunter, by C.J. Peters, M.D., and Virus X, by Frank Ryan, M.D. Their spare treatments of AIDS and HIV, usually as a public health problem and usually with critical words for the politics surrounding the disease, are useful and interesting but may obscure the reasons that AIDS is not treated simply as a public health problem. Fatal Extraction discusses both scientific and social issues but in the service of a specific question, again one that centers squarely on public health: Are there sufficient safeguards to protect patients from infection with HIV by healthcare workers.

And the Band Played On, first published in 1987, is reporter Randy Shilts's voluminous account of the early development of the politics of the AIDS epidemic. Randy Shilts was the first full-time AIDS reporter for the San Francisco Chronicle, the newspaper that has consistently offered the highest level of AIDS reporting of all the major dailies in the United States. This remarkable book is, for all its length, a breathtaking read. It places an almost painfully human face on the epidemic, from the suffering of people ravaged by disease to the anguish of their loved ones and of the providers struggling for recognition of their work with a newly identified disease. And the Band Played On is a moving book, but it's also a highly polemical contribution to the discussion of the politics of AIDS. Vivid characterizations are made of heroic activists, contemptible sell-outs, and noble physicians, and the book has an air of 20/20 hindsight to it. It is, nevertheless, an exciting book and a useful introduction to a staggering number of individuals who have continued to play visible roles in the AIDS arena.

A Disease of Society is a collection of essays, primarily by healthcare providers working in academic settings, describing some of the challenges of the AIDS epidemic. AIDS has taken on a life of its own in popular culture, from visual art to television miniseries, and the book discusses these images alongside thoughts on the implications of AIDS pathology for prison systems and for the symbolic value of blood and blood donation. Other articles tackle the way AIDS has called for redefinitions of "family" and for changes in the regulation of new drugs. Published in 1991, A Disease of Society's observations about the nuances of discrimination and the challenges of a new and devastating disease remain, sadly, almost uniformly relevant today in spite of the status of HIV as the disease organism that has inspired the most rapid accumulation of research in the history of medicine. These essays amply demonstrate the power of cultural and institutional effects in the treatment of and engagement with AIDS in the United States.

My Own Country was first published in 1994. A highly personal account of treating AIDS patients in rural Tennessee, Abraham Verghese's book is beautiful and engaging. If you have an opportunity to hear Dr. Verghese interviewed, take it; his language is clear and adept, and his compassion and commitment are a pleasure to hear in his voice. Dr. Verghese traces his arrival in Tennessee, the development of his AIDS practice there, and his own slow but sure burnout in a highly personal way that is also deeply respectful of the colleagues, families, and patients he encountered. The many chapters are short, making this book even more difficult to put down.

Published in 1996, Impure Science, by sociologist Steven Epstein, describes in particular the entry of AIDS activists into the mainstream. Epstein describes the actions of activists, scientists, politicians, drug companies, and physicians in their efforts to obtain recognition and save lives while protecting their own self interests as well. Issues of credibility take center stage in this book; the evolution of AIDS activists into lay experts in bioscience meant incorporating many of the mainstream scientific community's measures of credibility, and Epstein offers an interesting discussion of the way this development served to recreate privileged access to information and influence within the very groups that sought to "democratize" such access. Another fascinating discussion of the nuances of credibility concerns dissenting scientist Peter Duesberg's rejection of the theory that HIV causes AIDS. Epstein's careful and intelligent analysis of political issues surrounding AIDS is both refreshing and encouraging.

Early compassionate engagements with AIDS as a social issue centered around the anguish of an embattled community in the face of the apparent indifference of mainstream culture, from individuals to institutions. While healthcare workers were, from early days, striving to answer the questions that would enable them to provide care to their patients, the limited knowledge about AIDS and HIV -- and the extremely limited treatment options available -- could do little to moderate a public debate trapped by issues of morality and denial. Discussion of the meaning of AIDS retains elements of hysteria and hostility, as shown by the experiences of Dr. Verghese and the groups about which Steven Epstein writes. At the same time, discussions of the social impact of AIDS are emerging that are accessible and respectful, stabilized by a much larger base of knowledge than was available in the late 1980s.

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