Written by guest blogger, Margaret Morganroth Gullette
@gullette_mm
The history of medical stigma more or less tracks the history of many frightening and fatal communicable diseases, during the period when etiology is unknown, and even after the cause is known, if the disease is long considered incurable.
Syphilis, HIV/AIDS, and now Alzheimer’s Disease (AD) follow a pattern. The victims, or, often, a particular group of victims, become pariahs.
Syphilis is a useful example. Prostitutes were seen as the major vectors, spreading the disease to good family men as well as soldiers and sailors, and the women became, and remained, unique pariahs. The fact that men were guilty of transmitting venereal diseases, that men who had contracted syphilis gave it to their wives and children (and also their other sexual partners, including male and female prostitutes)—such facts were hidden by immaculate patriarchal silence. Henrik Ibsen’s play Ghosts (first staged in 1882, in Chicago), told the story of one of those wives who has never visited a brothel or had an affair, and of their stricken son. This created, for those who knew it, a new class of innocent family victims, but sex workers retained the stigma. The first chemical compound to treat syphilis, Salvarsan, was developed just before World War I; during World War II military men were still being warned against prostitutes. Before Salvarsan, and then penicillin, men would die, like any infected women, of the ravages of the disease. But before any fatal physical insignia appeared on the body of the victim, for centuries it was these sex workers who incurred a social death. Their association with syphilis was for them a social fate.
HIV/AIDS, discovered in the 1980s, also rapidly known as a sexually-transmitted disease, was first believed to have been brought to the United States by Haitians. In the first flush of American terror, Haitians became the first stigmatized group. Julio Capó Jr. tells the story.
On March 4, 1983, the U.S. Centers for Disease Control listed Haitians as one of the four “high-risk” groups for AIDS. . . . The federal designation singled out Haitians as the only ethnic group believed to be inherently susceptible to the then-mysterious disease. [i]
Haitians soon were joined in the [then] “4-H” club that also included homosexuals, heroin users, and hemophiliacs. Again, there was an innocent group, the hemophiliacs. The others, especially gay men, incurred a bewildering, exacerbating, painful, social death over and above the vagaries of the illness. Socially-constructed terror of them was not yet known as a social fate.
Like Ibsen, Tony Kushner comes into this history with a creative rescue, Angels in America. At this point the disease had a known cause, a movement creating empathy among some parts of the public, a heroic band of care-givers (some trained, some members of their new families of care) and some medical treatments.
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A disease, the stigma falling on an afflicted group, a literary rescue, a medical alleviation or cure: This seems to me to be a four-part underlying chronological pattern. The medical side–disease and then alleviation or cure–is known to scientists, epidemiologists, public health officials, writers, and multitudes of readers interested in research that leads to cures. Care-giving, an indispensable aspect early and late in the cycle, is known to nursing education and people who love the sufferers. The literary-rescue part should be known to anyone interested in the interplay of politics, medicine, public health, and culture.
And the complete story, all four parts, but with the emphasis placed on the flourishing of stigmas, should be known to all.
With AD, my article tries to argue, we are at the first, helpless, terrified, stigmatizing phase. We lack everything else, except remarkable care-giving and feverish research. As a few watch the developments impatiently, with this historical awareness and compassion, societies around the world deliver a new and quite innocent group to this terrible social outcome. The bad luck of contracting a disease at the beginning of a cycle should not merit such a fate.
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I hope that my term, “social fates,” may expand the concept of the Social Construction of Everything into new territory. We all owe a debt on this account to Peter Berger and Thomas Luckmann, for The Social Construction of Reality. A Treatise in the Sociology of Knowledge, of 1966. “Reality” in their title should include “everything,” but we know that transference of knowledge from domain to domain happens rather haphazardly rather than in one smooth leap.
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