Three decades before “Nothing about us, without us” became the axiom for policymaking by the sex workers’ rights movement, the national prostitutes’ rights organization COYOTE conducted a “Prostitute Study” which demonstrated that community-based participatory research had the power to revolutionize scientific paradigms. At the start of the AIDS epidemic, almost no one used community-based research to study critical health issues. But San Francisco sex workers, working as peer researchers interviewing and testing marginalized women like themselves, mapped the epidemiology of HIV in 1985. This forgotten study by sex workers on HIV/AIDS was an essential element of their political activism, using evidence-based research for making public policy, designing future medical research and changing public attitudes about the sex industry. Sex workers’ contributions to medical research, to pioneering harm reduction education, and efforts to challenge laws criminalizing the lives of HIV-positive citizens disrupted the dominant narrative of AIDS and AIDS activism. The activism of sex workers reminds us that science, like history, is best when done democratically.
Recent histories of the AIDS epidemic and the widespread deaths of so many gay men, famous and not, have occluded the historical record of sex worker activism. Though we now understand that homophobia led to the construction of HIV/AIDS as a “homosexual disease,” in the early and mid-1980s, the “gay plague” was juxtaposed against “heterosexual AIDS.” The definition of “heterosexual” was diffuse, serving as a catch-all label for soldiers, white suburban housewives, drug injectors, and “crack ‘hos” who might contract the virus.
At the beginning of the AIDS crisis there were no “crack ’hos” because women didn’t get AIDS. Then in 1983, Elizabeth Prophet, an African American mother of two, was profiled by journalist Randy Shilts in the San Francisco Chronicle. In Shilts’ narrative, Prophet became the stereotype of a black female welfare recipient, drug user and sometime prostitute. She had been arrested for a minor offense, but sick and unable to make bail, police moved her from county lock-up to the AIDS ward at San Francisco General Hospital. Doctors saw a “freak,” a statistical outlier, whose multiple infections they dismissed as the consequences of “natural” black female promiscuousness. Much later, researchers would realize that the earlier deaths of her two children from “pneumonia” were likely the result of their HIV-weakened systems. Prophet was first of many African American women demonized as threats to President Ronald Reagan’s promotion of family values, dismantling welfare, and his administration’s war on drugs.
Two years earlier, women prisoners held in New York City’s Riker’s Island, many of them charged with prostitution and related offenses, were dying of pneumonia and respiratory infections that their immune systems couldn’t fight. The New York Public Health department reported an unusual outbreak of candida among African American women and Latinas to the CDC. But then, as now, few outsiders cared about the health of prisoners. Prison medical staff routinely failed to document “jailhouse diseases” and once the women were released, emergency room workers presumed the former inmates were medically non-compliant, uninsured, or simply “hysterical” women. If the U.S. Centers for Disease Control and Prevention (CDC) had paid attention to unusual clusters of candida (“thrush”), cervical cancer, pelvic inflammatory disease, yeast infections, and bacterial pneumonia among women of color at the start of the 1980s, the myth of “heterosexual AIDS” may never have been created.
Sex workers paid close attention to the ways women were being blamed as the AIDS crisis grew, while ignoring the sexist diagnoses placed on them by Freudian psychiatrists. Members of COYOTE (Call Off Your Old Tired Ethics), a national prostitutes’ rights organization, were worried that they would be blamed for “heterosexual AIDS.” They realized that long-standing ideas about sex work and disease would shape the response to AIDS. The ancient image of prostitutes as reservoirs of infection had already been resurrected by Shilts and by medical researchers. COYOTE co-director Priscilla Alexander had read Judith Walkowitz’s history of the Contagious Diseases Acts in Victorian England, published in 1980, which provided a chilling example of what could happen during a sex panic: forced medical examinations of all suspect women and the imprisonment of any infected woman until she was “cured.” Activists were determined that history would not be repeated.
These threats spurred COYOTE members to organize against the “virus of repression.” They protested against discriminatory laws that made HIV positive status a criminal offense, and adopted the term “sex worker” to replace “prostitute”, which had so many negative connotations. They became “sexperts”, teaching each other, their clients, and anyone who would listen that condoms were essential for preventing infections. But at the base of their activism was their own scientific research, a public health study they designed and conducted, in conjunction with Dr. Constance Wofsy and Judith Cohen of the San Francisco Medical Center.
“The Prostitute Study,” as it came to be known, surveyed 180 women in San Francisco thought vulnerable to AIDS. Their research concluded that HIV could be transmitted through a single body fluid exchange, suggesting that a virus, not a promiscuous “lifestyle,” was the cause. Indeed, for women in the survey, shared needles were the primary source for seroconversions – for human immunodeficiency virus infections of the blood. Their discovery so contradicted the thinking of established medical authorities that it would be ignored for at least another decade. Yet the work was there. For scientists, the research was presented at the global AIDS conference in Paris in 1986, published in the Lancet that same year, and as a CDC report in 1987. Sex workers’ research launched an interagency longitudinal cohort study, although funding required sex workers to be the subjects rather than collaborators. The California Prostitutes’ Education Project, founded by COYOTE, published a manual outlining sex workers’ role in HIV/AIDS prevention. Public health officials began to recognize sex workers as potential allies, not disease vectors.
CDC researchers relied on socially-constructed classifications such as risk groups, lifestyle, sexual promiscuousness, and racial, gender or sexual “identity” to determine who might contract HIV. Consequently, as establishment scientists mapped AIDS, they overlooked women and excluded gynecological conditions that women suffered. Similarly, they ignored other marginalized people whose bodies were already compromised by drugs, poverty and environmental racism. “Homosexual” was a trope for frequent, loveless, and unnatural sexual practices; promiscuous gay men, claimed Dr. Joyce Wallace of St. Vincent’s Hospital in Greenwich Village, had “more than 50 partners a year.” When clusters of men who identified as gay began to fall ill from once rare diseases, epidemiologists applied existing theories of disease transmission, deliberately contorting definitions and reconstructing afflicted groups to exclude those who didn’t fit.
In the midst of ACT-UP in New York City and San Francisco, sex workers in those cities and elsewhere were carrying out their own political agendas, operating on shoe-string and no-string services for their sisters and brothers working on the streets. For all the “gentrification” of HIV advocacy, three decades later sex worker-founded and run groups must still fight for the right to speak without risking arrest. They can be arbitrarily denied government funds to distribute clean needles, crack kits and condoms. For black women between 25 and 44, HIV is a leading cause of death. Yet, the President’s Office on National AIDS Policy prioritizes men who have sex with men, and shuts out marginalized women, including sex workers and poor black women, from the work of preventing new HIV infections. Elizabeth Prophet’s ghost will not go down.
Melinda Chateauvert, PhD, is the author of Sex Workers Unite! A history of the movement from Stonewall to SlutWalk (Beacon Press, 2014) and the Associate Director of the Front Porch Research Strategy in New Orleans, Louisiana. She tweets from @whorestorian
NOTCHES: (re)marks on the history of sexuality is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Based on a work at www.notchesblog.com.
For permission to publish any NOTCHES post in whole or in part please contact the editors at NotchesBlog@gmail.com