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AIDS as a Factor in Discourse

California State University, Dominguez Hills
University of Wisconsin, Parkside
Latest update: December 25, 1998
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Stories and Information

Living in the Bonus Round
Impure Science: The Story of AIDS Research
Peter Gomes' The Good Book
NEW AIDS, Conspiracy Theory, and Race

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Steve Schalchlin's Diary

The Online Diary of Steve Schlachlin. This is an award-winning site on Geocities. (And for summer fun you should consider opening a free web site at Geocities. So investigate while you're there.) Steve's diary is an incredible example of narrative, as we use it on this site to tell our stories, to turn those stories into text, and to understand how those stories determine our validity claims and how well they are heard. Steve is a songwriter. Go out on the Web and enjoy! And e-mail Steve. He's offered to come to CSUDH to perform for us! Jeanne

Don't miss Living in the Bonus Round and visit The Last Session, the Site depicting his off-Broadway show.

Added on June 20, 1998.

Impure Science: AIDS, Activism, and the Politics of Knowledge
Review by Jeanne Curran

Added on July 15, 1998.

Steve Epstein describes the fascinating story of the science surrounding AIDS research, the rush to find a vaccine, the terror of recognition that medical science was a long way from conquering viral infection, the greed of competitive science even in face of many people's imminent death, and the same need for tolerance of ambiguity we find in every situation that has multiple perspectives with no final authority or ability to prove who's right.

This story is told from the perspective of the gay men's perspective in the United States. That makes it no less valuable as a resource for all other groups, for we are facing a world epidemic of major proportions with AIDS. Epstein expresses cogently and clearly the dilemmas we ordinary folkds face when we must assess the credibility of the leading edges of scientific knowledge, especially when it affects our very lives.

"These conceptions of the social relations that govern scientific knowledge -production have several implications for understanding cases such as AIDS research. First, these analyses suggest that scientists, other professionals, and laypeople alike find themselves frequently in the business of assessing the credibility of knowledge claims and claimants, and asking who or what they should trust and believe. The difficulty is that--for laypeople and to a considerable extent for experts as well--such assessments can usually be made only indirectly, through the scrutiny of external markers of credibility. Who conducted the study? Where was it published? What does the New York Times have to say about it? What does my doctor think? Even such everyday iconography as the diploma on the wall serves an important signaling function within a social system stitched together by assertions and assessments of credibility."
op. cit. at p. 16

Epstein's work is readable, scholarly, caring, and honest. He reminds us that we all have biases, and that those biases can kill. When the book first arrived in bookstores I found I could not put it down. The story is compelling, especially for those of us who understand its implications for discourse.

"'Scientists constantly face uncertainty,' Susan Leigh Star has emphasized. 'Their experimental materials are recalcitrant; their organizational politics precarious; they may not know whether a given technique was correctly applied or interpreted; they must often rely on observations made in haste or by unskilled assistants.' Yet precisely because contingency, confusion, misgivings, and indecision tend to be 'written out' of scientists' published work as part of their normal persuasive practice, nonscientists often have mistaken notions about the degree of certainty behind the knowledge that science generates. As Harry Collins has concluded, 'There is a relationship between the extent to which science is seen as a producer of certainty and distance from the research front.'"
op. cit. at p. 241-2

Robert K. Merton said this same thing ever so long ago. Take a look. Notice that one way of gaining some faith in the validity of an idea is examining what many well-informed people have to say about it. That doesn't mean that fifty million well-nformed scholars can't be wrong. They can, and probably have been. But, like reading the dissenting opinions in court cases, sometimes the ones who lost, who dissent, are on the leading edge of what is to come.

Visit for more information on Epsteins' Impure Science: Aids, Activisim, and the Politics of Knowledge.


Susan Leigh Star, "Scientific Work and Uncertainty," Social Studies of Science 15 (August 1985): 391-427, quote from 392.

Harry M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 (November 1987): 692.

AIDS, Conspiracy Theory, and Race

On Tuesday, December 22, 1998, the New York Times reported on "Challenging the Conventional Stance on AIDS," by David France, p. D6.

This article reports on "The Harlem AIDS Forum sponsored by the Rev. Al Sharpton and his National Action Network. . . . Of the dozen or so speakers, only one subscribed to the theory that H.I.V. was what was making people sick, and he argued that [this] . . . was part of a genocidal project.

Mario Cooper, founder of Leading for Life, which is a project of the Harvard AIDS Institute, spoke of the forum as a "productive 'catharsis" in which the community is making an effort to come to terms with this disease. Neither Mr. Cooper, nor Dennios DeLeon, "director of the Latino Task Force on AIDS, attended the forum. But both recognized the importance of bringing the community to public discourse on the issue.

Curtis Cost, who organized the Harlem AIDS Forum, spoke of just allowing people to express the fears and thoughts that are not reflected in the dominant media. "Our goal was to allow people to hear the disparate perspectives, and do their own follow-up research." Here is public discourse beginning to be sanctioned even by those who disagree with the validity claims. The open forum, with the commitment to allow the good faith hearing of truth claims that have previously been denied a serious forum, may well be a stage in the public discourse that must precede equal access to all claims.

Steven Epstein made similar claims for the right of those suffering from AIDS to be heard seriously in challenging the health industry. The validity claim which challenges the ethics of our social structure in dealing with racial issues was given considerable credence by the infamous Tuskegee experiments, as David France notes. So now we must consider that good faith hearing of health claims is going to need to deal with the loss of trust engendered by past dealings with all those not privileged by membership in the power-wielding majority. To assume that such demand for hearing will allow only "rational" claims, or only those acceptable to the privileged claims of the majority, is to fail to comprehend that "rational" carries within it the very seed of silencing that is being challenged, and is consequently, far from rational.

An Active Minister and Questions of Sexual Choice

Consider Peter Gomes' book, written as a minister to the undergraduates at Harvard University. He chose to come out at the time he published this book. If questions of sexuality are a major factor in constructing your voice and finding a forum in which to be heard, here's a start:

Visit for more information on Peter Gomes'The Good Book.

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