Monthly Archives: June 2013

There are (at least) two AIDS exhibits in New York City right now. One is part of a larger exhibit about activism in NYC and the other focuses on the first five years of the disease in NYC. Both of these exhibits are limited in their focus rendering them both effective. To create one exhibit that tells the 30+ year story of the disease, the social impact & history, the science and politics would be daunting and possibly not very meaningful. Historians and curators are familiar with this phenomenon if they’ve ever struggled with how to tell the story of something that changed everything. It’s best to narrow the focus to help people experience the story on the most intimate level.

It’s remarkable (and worth noting) that exhibits about AIDS have moved beyond a quilt exhibition. While nothing will mitigate the devastation, loss and shameful politics of the period, it is exhilarating to consider how far we’ve come. There is now an entire generation who has come into their sexuality without fear of death. The anxiety of HIV/AIDS testing is a distant memory for most. In the past, people would debate the trip to the doctor/clinic, not convinced that they actually would want to know. Weeks were spent waiting for the results, which could only be given in person. Today, like ovulation, pregnancy, and blood sugar, HIV testing can now be done at home. There is still no cure and there is still stigma, but boy have things changed, and that is a story worth telling.

Back in the early 1980s people started getting a rare form of cancer. The fact that it seemed to be striking gay men caused doctors to create the name GRID (Gay Related Immune Deficiency). A year or two later the name changed to the more accurate AIDS (Acquired Immune Deficiency Syndrome) and a few years later (1986) HIV was identified. In those first few years there was little information and as is often the case, rumor and fear filled the void. All that was really known was that homosexual men were getting very sick and dying. It was not known how exactly the disease could and could not be transmitted. Was it airborne? Could you get it from touching skin, sharing food, drink, or smoke? Patients were quarantined and communities were panicked. Things only got worse when a dormant period of the disease came to light. People who looked and felt perfectly healthy became concerned. Film and movie sets grew tense seemingly overnight. Few actors were ‘out’ in the early 1980s but friends and colleagues suspected (or knew firsthand). You couldn’t tell who might be sick (or harboring the disease) and therefore everyone (who seemed gay) was suspect. Some actresses refused to do kissing/sex scenes. Some actors refused as well (there is very sad and painful footage of Rock Hudson trying to avoid kissing Linda Evans). People in real life changed their behavior as well. Some people were concerned about their hairdresser. Should he be touching clients? Waiters drew public concern as they touched the tableware. Homosexuals, a group profiled since the dawn of time, were now seen as potentially dangerous, even lethal.

Devastation often brings people together, and the disease did. Gays (and lesbians) came together to support, fight and care for the ill. They took to the bedside, the streets, the stage and made their presence known. They drew attention not just to the disease but also to the deafening silence of political leadership. It’s impossible to separate the political stance and funding allocation for AIDS with the perception of it being a ‘gay disease’. In the later 1980s very public evidence of the equal opportunity of infection came to light. Ryan White’s mother sued the Indiana Department of Education in late 1985. Ryan, a hemophiliac had AIDS and wanted to attend school. Elisabeth Glaser died from AIDS in 1984 after receiving a tainted blood transfusion. (Both of her children died shortly thereafter.) She was married to a very popular actor at the time. And disgusting as it is, it’s true; a child and a celebrity spouse made for a better cause than homosexuals.

One could certainly argue that the disease galvanized a movement and a visibility that has birthed today’s civil rights progress. But oh what a price was paid. Entire communities were lost (particularly in the arts.) An inconceivable amount of people has died from AIDS (25 million) worldwide. People are still contracting the disease all over the world, the worst infection rate is in sub-Saharan Africa. Prevention in these countries is incredibly challenging. Here at home there are many many people of all backgrounds and orientation experiencing a degree of sexual freedom that would make 60s love-in participants blush. It’s likely that safe sex is not often practiced. AIDS is no longer seen as a death sentence, but something for which you can take a pill (and not a regime of dozens of pills at specific times of the day). But it is still a helluva disease with no cure and it’s most certainly best to avoid it.

We can be grateful that the fear has lifted and for the medical progress that has been made. But it’s vital that men and women who have no memory of 30 years ago be told the story. It’s not about making people feel badly it’s about giving them roots. Knowing where we came from and how far we’ve come is empowering. When we feel strong and relevant we engage in less risky behavior.