This week we sat down with New-York Historical’s Senior Director of Resources and Programs Jean Ashton to discuss her book, AIDS in New York: The First Five Years. The book shares its name with the 2013 N-HYS exhibition that Ashton curated. To learn more about the epidemic in NYC, check out our online exhibition.
How did you first get interested in the topic of the AIDS epidemic in NYC?
The New-York Historical Society recently presented exhibits on the history of cholera, smallpox, and the discovery of insulin. They showed how contagious disease was an integral part of urban history—disease had social and political impacts and treatment was influenced by cultural and political norms. The AIDS epidemic was no different. We were convinced that a new generation of AIDS patients was growing and that there were lessons to be learned, so we created an exhibit that would serve the public interest in explaining why treatment and preventive care were still important and relevant.
I conducted extensive interviews, talking to about 40 people who had been involved in the research in the early 1980s, who were survivors of the period, or who had lost friends and had vivid memories of the disease—everyone from Matilda Krim, Ed Koch (just weeks before his death), Larry Kramer, David Ho, to doctors currently running HIV clinics. It was clearly important to have these voices on record while people were still alive and able to recall their memories.
What was New York City’s reaction to the discovery of AIDS?
The people of the city of New York were at first unaware of the spread of this new disease which appeared primarily in socially “outside” communities, among down-and-out heroin users. As knowledge and disease spread, AIDS was characterized by a stigma that stemmed from the taboos related to its source. Just as the Irish were blamed for cholera in the 1840s, gays, and to some extent, black people were rumored to be responsible. AIDS was a punishment for bad behavior, some thought. There was also a lot of fear since the means of transmission was completely unknown; fear of infection added to the panic. On the other hand, middle-class families in communities throughout New York were, for a long time, completely isolated from the epidemic—or so they thought. But after 1985, deaths from AIDS became so common and so widespread that it was impossible to ignore. The death of Rock Hudson, widely covered on television and print media, was a turning point, especially after Hollywood stars like Elizabeth Taylor became committed to the search for prevention and cure.
Before the discovery of the HIV virus, what did victims suspect was making them sick?
In the early period before the virus was identified, no one really knew what was going on. This allowed for a lot of magical thinking, efforts to find non-medical solutions, homeopathic remedies, etc. Mourning and fear were widespread, as almost everyone in some communities either had the disease or were convinced they would get it. There was a strong reaction among some groups against behavior change of any sort—the use of condoms or avoidance of multiple anonymous sexual encounters. These were “identity markers” that had been fought for and won as gay culture proclaimed itself proudly. Some, particularly in black communities, talked about intentional infection and government-sponsored genocide.
How did the AIDS epidemic affect the civil liberties of HIV-positive New Yorkers?
Civil liberties are always potentially at odds with public health initiatives. Men who have sex with men were—and until recently still are—prevented from giving blood, since possible transmission of the HIV virus through the blood supply was established early on. People at first feared that homosexuals who revealed their status would be sent to concentration camps or at least there would be social consequences. Parents of school children felt that children with AIDS would contaminate their kids. There were also many reports of AIDS patients being kicked out of their apartments or being given sub-standard treatment in hospitals where staff members refused to enter their rooms. The worst aspects of this calmed down as more was learned about transmission of the disease.
How do you hope AIDS in New York improves understanding of public health in the city?
The reaction to the possibility of an Ebola outbreak in the city shows that New Yorkers still have a lot to learn when dealing with public health issues. Fear affects social behavior. I hope that understanding the way in which AIDS entered into civic consciousness—about the need to treat disease as something other than a moral issue and to be realistic and open about the presence of a contagious disease—can help a current generation understand the present, as well as the past. On a more practical note, I learned from the comments on the exhibition, many young people today don’t know what HIV/AIDS is or its enduring effects. We need to teach them how important it is to be vigilant and careful.