How to Survive a Plague: Fighting AIDS and Challenging Stigma

By Karen Sternheimer

Journalist David France’s book on the history of the AIDS crisis, How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS, provides an important reminder of how the fear of marginalized groups can delay research and treatment of a deadly disease. Effective drug therapies, now in use for more than 20 years, may have made it easier for people to forget—or perhaps never to learn in the first place—the toll that indifference and fear took on so many peoples’ lives. Between 1981 and 1995, before effective treatments existed, more than 500,000 people contracted the disease, and more than 300,000 of those people died.

The disease was first identified in the United States in 1981, when a handful of young gay men in Los Angeles had very unusual symptoms for otherwise healthy men. Reports of gay men with similar symptoms in other parts of the country soon surfaced. The disease was soon called “gay cancer” and later “Gay-Related Immune Deficiency” (GRID), suggesting that this was something that could only afflict gay men.

At a time when the country was taking a socially conservative turn, this new disease seemed to be proof for those who thought being gay was a sin. Homophobia, coupled with initial uncertainty about what caused the disease (researchers identified a virus as the cause in 1984, to be named the Human Immunodeficiency Virus, or HIV) helped create fear of and disdain for those who were ill. Few politicians spoke out directly against homophobia; by contrast, political leaders regularly condemned homosexuality.

Few states had laws against employment discrimination, so people who were gay or lesbian could lose their jobs and housing due to their sexual orientation. In How to Survive a Plague, France details getting fired from a newspaper job in New York when his boss discovered that he was gay. Even the private sexual behavior between consenting adults was not protected; it wasn’t until the 2003 U.S. Supreme Court case Lawrence v. Texas that states’ sodomy laws were ruled unconstitutional.

France also describes how one of the first doctors to treat AIDS patients, Dr. Joseph Sonnabend, was threatened with eviction from his New York apartment when neighbors feared that his practice would threaten the health of his neighbors in 1983. By that time, public health officials had reassured the public that the virus could only be transmitted through blood or sexual transmission, not by casual contact.

In this context, it’s not a surprise that there was a sluggish governmental response to the epidemic. Activists decried the silence of many politicians--President Ronald Reagan did not mention AIDS publicly until 1985—and reminded that public that “Silence=Death” on posters, banners, t-shirts, and pins. Many New York sidewalks bore this slogan, spray painted in pink throughout lower Manhattan.

Even health care providers and hospitals discriminated against people with AIDS, as workers sometimes refused to enter their rooms, even to bring patients meals. France details how his partner languished in the hospital for days without a visit from a doctor to order tests or prescribe medication for a treatable form of pneumonia before his death in 1992.

Sociologist Erving Goffman wrote in his book Stigma: Notes on the Management of Spoiled Identity that stigma is something “deeply discrediting,” leading to social rejection, exclusion, and a “spoiled” social identity. Stigma, according to Goffman, is based on the reactions of others, rather than a stable, universal trait. In many parts of the U.S. today, being gay or lesbian is hardly a source of stigma—instead people who express homophobic attitudes might be more likely to be condemned. This demonstrates Goffman’s point: stigma is rooted in social context.

Goffman discusses how stigma can be linked with “abominations of the body.” In the first decade of the epidemic, those in the final stages of AIDS were physically marked; they often appeared gaunt and a rare skin disorder called Kaposi's sarcoma that left splotches on their skin. Goffman also notes that stigma is the result of perceived character flaws, as many people viewed being gay as a character defect at the beginning of the AIDS crisis, just a few years after the American Psychiatric Association declassified homosexuality from its list of mental disorders.

People who contracted HIV/AIDS through blood products—not due to same-sex relationships or intravenous drug use—were often treated with as much hostility, what Goffman calls “courtesy stigma.” Ryan White, a teen who contracted HIV through a blood transfusion, was forced to leave school in 1985 due to discrimination. When hemophiliac brothers in Arcadia, Florida, contracted HIV through blood products, their family's home was firebombed in 1987. Their family had to wage several legal battles for the boys to be able to stay in school, despite the public health community’s repeated reminders that HIV/AIDS is not spread through everyday contact.

Stigmatized groups actively cope with and challenge the exclusion that they face, what Goffman referred to as “stigma management.” The desperation and suffering caused by the disease, as well as an often indifferent or hostile public’s reaction to those with HIV/AIDS led to numerous activist groups who sought treatment, research, and compassion for people with AIDS. In his book, France describes the formation of several groups, including ACT UP (AIDS Coalition to Unleash Power) which is featured prominently in France’s documentary, also titled How to Survive a Plague.

If the stigma surrounding being gay hadn’t been so strong in 1981, would the public’s initial reaction to HIV/AIDS have been more urgent? Certainly the fear of a new, unknown deadly disease would have likely still caused at least some panic, but if it first afflicted another group, one with higher social status, would the reaction have been the same by politicians? Stigma can make it easier for others to dehumanize feared groups, and sometimes even make it easier pay little attention to their suffering, and even their deaths.

Comments

[Lauren Winters]

I know about HIV/AIDS and it a very disease that look very disgusted to people to have and it a very deadly disease that cancer can in provided to ladies and men that died over 300,000 that died make me feel so sad:(

[Song Status for WhatsApp]

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[lilian]

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[Jayson]

Great Post.

[Harris]

A very informative post for sure