Randy Shilts' book and the original reporting that formed the basis for the book offer much for us to consider.
The San Francisco Chronicle's online site has posted a May 13, 1982 Chronicle story that Shilts authored. Look at it to consider the evolution in cultural attitudes, and medical scientific understandings about HIV/AIDS.
What specific reporting and writing strategies can you identify in the book?
What weaknesses can you identify?
What are you learning by reading the book that will help you think more deeply about the role of a journalist and journalism?
How does this work fit into the overall realm of "The Literature of Journalism?"
Read this story about the French virologists who won the 2009 Nobel Prize for their research about HIV. Note the reference to Dr. Robert Gallo of the United States who was in competition with the French researchers.
BH
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For those who are interested, I am posting my response to "Once Upon a Virus," a book by Canadian folklorist Diane Goldstein. She discusses the many legends that have circulated about AIDS, and looks for what these stories tell us about cultural attitudes towards disease, health care bureaucracies, and risk taking in the real world, versus the world described in health care ed.
ReplyDeleteThis response piece discusses several tales--what are often called "urban legends,"
and which Goldstein more accurately refers to as "contemporary legends." The first is the story of some friend of a friend who met a woman at a bar, had a one-night stand, and when he woke in the morning the woman was gone and "Welcome to the World of AIDS" was written on the bathroom mirror in lipstick. The second set of legends revolved around a man named Ray Mercer, who was reputed to have spread AIDS deliberately to dozens of women in a community in Newfoundland. I point out that a man named Lushawn Williams evidently did just that, if the New York Times is to be trusted. And finally, the "spider boil" legend is the old story that someone had a big boil that popped and out crawled hundreds of baby spiders...
So here is the response:
By a striking coincidence, I was assigned to read And the Band Played On in another class this week, and so my attention in reading Once Upon a Virus was from the start drawn to what Goldstein refers to as “the fragile borders between legend and reality.” (116)
When Goldstein recalled the “Welcome to the World of AIDS” legends, my mind leapt right away to the story of Gaetan Dugas. What Goldstein might perhaps have made more clear with Dugas, or “Patient Zero,” was that Dugas was focus of the Centers for Disease Control’s own efforts at the beginning of the HIV outbreak. Furthermore, Dugas was clearly and disturbingly unconcerned about the fact that he was infecting people, long before the possibly apocryphal story of him in the bath houses circulated. As Shilts writes, in describing Dugas’s death in 1984--the very day that the city of San Francisco closed the bath houses, “At one time, Gaetan had been what every man wanted from gay life; by the time he died, he had become what every man feared.” (Shilts, 439)
As I read on, my cognizance of the links between legend and reality multiplied. As Goldstein moved further into the subject of the aggressor, I remembered reading the New York Times stories about the case of Lushawn Williams in the late ‘90s. Perhaps Ray Mercer did, in truth, only sleep with two women, and not dozens as the rumors alleged. But what about Williams? Did the Times really get that story so wrong?
And with spider boils—Goldstein points to the origin in earlier legends. But I remember an afternoon at my father’s lab when a patient arrived fresh from a recent trip to South America with a large red sore on his arm. My father called my attention, lanced the man’s sore with a scalpel, and before our eyes a live bug crawled out of the wound!
These stories, of course raise the question of chicken and egg. As Goldstein observes, all variations and juxtapositions come into play: while legend may sometimes follow fact, there is also "polygenesis," where variations emerge simultaneously in reality and legend, and of course "ostension," where we have, for example, copycats of crimes that originate as legends. “It is important to note that the image of recourse to legend when information and understanding are lacking is simultaneously too bold and too superficial to really capture the fragile borders between legend and reality,” she concludes. (116) “Legend rarely gets incorporated whole into those gaps, and gaps in information are rarely complete or visible. Realities are not singular and transparent but rather multiple and emergent.”
I was further struck by her main use of this analysis—not to look for broad insights into culture or human nature, but rather for more targeted insights into culturally specific attitudes towards health care and risk. Because she did not elaborate on the issue of risk early on, this seemed to me to be prosaic in the first place, and tautological in the second. Of course these legends would reveal people's anxieties about AIDS and risk! But what more do they say? I thought.
Yet as she explained the gap between health education policy and behavior based on risk assessment in the real world, I came to appreciate her use of folklore to deal with challenges that physicians, health officials and social scientists could not tackle. This is a striking example of the flexibility and power of folklore scholarship.
Taking into account both the labyrinthine associations between fact and legend and Goldstein’s purpose for this analysis, I was able to make one series of connections that she did not seem to make. In her chapter on origins, she writes of both the “otherness” of theories that place the origins of AIDS in Africa, and the conspiracy theories that allege AIDS was a deliberate plot by American scientists and the Pentagon.
What Goldstein does not discuss is the main thesis of Shilts’s book: That the Reagan administration, the press and the entire national and regional health care bureaucracy of the 1980s showed little interest in responding to a crisis that was afflicting only homosexuals, Haitians and Africans. Reagan refused to put an extra dime towards research and response funding at a time when the CDC was sounding the alarms of a full-blown epidemic. Indeed, the only federal agency whose budget he was willing to increase in those years was the Department of Defense.
Perhaps there is a link between this reality—and the anger it provoked, and the conspiracy theories, just as there may have been a link between Bush administration policies and the post-Sept. 11 conspiracy theories. Perhaps this is also a key link between the HIV legends and issues of humans rights and social justice.
Goldstein also observes that legends concerning the needles also show what she calls a resistance to the health care bureaucracies and official narratives. The idea of the external aggressor or predator feeds into this paradigm as well.
“Virtually all populations associated with AIDS since its discovery have been represented by members of the dominant population in some way as alien, antisocial, unnatural, dangerous, or immoral," she argues. "To move then to locate the risk in the ordinary home is to import all of those meanings. The resistant response is to externalize the risk—to cast it out of the bedroom (where we don’t want it) and back into the outer world (where we will take our chances). By doing so, we simultaneously move medical authority out of our bedrooms…”
Goldstein finishes this sentence with “…and resist the encroachment of increasing medicalization on our lives.” But perhaps it was the failed response of authorities, early on, that created an overall feeling of bad faith and mistrust, so that later efforts at intervention were viewed with suspicion and cynicism.
By the way, on the question of whether AIDS did originate from primates in Africa, a quick search of the Web reveals that additional evidence to support this assertion has appeared in prominent, peer-reviewed scientific journals since Goldstein's book was published. It is of course possible that there is still a very robust debate among scientists on the subject. However, I believe Paula sourced something in class that was recent and from the National Academy of Sciences, and they are an excellent, if not authoritative source of scientific information. Still, Goldstein's ultimate point seems to have been that the scientific community has its own biases, and that seems to be worth keeping in mind.
ReplyDeleteA study in the National Academy of Sciences (Nov. 20, 2007) theorized that AIDS entered the U.S. via Haiti from Africa in 1969 and that it had moved from Africa to Haiti sometime around 1966. Evidence suggests that the virus entered humans in the 1930s by the consumption of infected monkey meat.
ReplyDeleteIt's believed that the virus had been circulating in the U.S. about nine years before its first clinical description which argues against the "patient zero" theory that Shilts promotes in his book.
For another perspective on AIDS, check out the November 1, 2000, 152(9) issue of the American Journal of Epidemiology. It explains the epidemiological reasons as opposed to the biological reasons, for the great genetic variety in the virus.