Many of the 15 gay men whose stories make up Perry Halkitis’ new book, The AIDS Generation: Stories of Survival and Resilience, didn’t expect to live past the age of 30. When they learned they were HIV-positive, during the height of the AIDS epidemic in the 1980s and 90s, most lived by the “myth of two,” believing they could expect to last another two years, tops. Friends and partners suffered and died. Some turned to drugs, sex, and alcohol to dull the pain.
Decades later, they’re still here, thanks in part effective antiretroviral therapies—first introduced in 1996—that dramatically improved the prognosis for those living with the virus. Now confronting the physical and psychological realities of middle age, the men who eluded death in their twenties and thirties are now looking toward the end of their natural lives—and attempting to make sense of what their legacies will be.
In the book, NYU’s Halkitis—a professor of applied psychology and public health (Steinhardt School) and population health (NYU School of Medicine), director of the Center for Health, Identity, Behavior, and Prevention Studies, and associate dean of the Global Institute of Public Health—weaves together interviews with these men to tell the story of the outbreak of AIDS in America. It’s a rigorous examination of how his subjects have managed to survive and thrive despite illness, fear, and loss—and what emerges is a collective portrait of tremendous strength and resolve. As Halkitis writes, “It has been said that Americans who served in World War II are the greatest generation. I say that my generation, the generation of gay men who came into their own in the 1970s and 1980s and were decimated by AIDS, are, instead, the bravest generation. I know because I lived it.”
NYU Stories sat down with Halkitis to talk about resilience, memory, and the past and future of AIDS activism.
In the book you present raw, unedited sections of interviews—with “um”s and all. Why?
I chose not to clean the language because I think that, in seeing the “um”s, the stuttering, and the misuse of words, you learn something more about person. Carol Gilligan, who’s an inspiration for me, speaks about looking beyond the words to what people are really saying, what they’re not saying, and how they’re saying it. That was definitely an approach I was influenced by. It’s also important to say that I didn’t picture myself as this neutral, “I have no opinions” observer. I engaged with these men in a meaningful way, as though having a conversation in normal life. I wanted them to feel at ease, but I also wanted them to know this was more than just a research project for me. When I didn’t understand what they were talking about or I thought that I was imposing my own meaning, I would reach out to them and ask them to explain for me.
The book draws on the work of psychologist Erik Erikson, who outlined different stages of psychosocial development. How does an emotionally difficult past affect people heading into middle age?
Several of these men seem to be going back and trying to redo the past. That could mean rekindling a career, getting married for the first time, being in a relationship for a first time—all things that people generally do in their twenties and thirties. It’s almost as though you must go back and plaster over all the cracks before you can move on.
But it’s mind-boggling to think that in 20 or 30 years these men will be really dead, whereas they were expecting to die 30 years ago. Will they be more afraid as death approaches, or will they embrace it? I have no idea, but it’ll be interesting to see. What happened to them was unnatural, and outside of the normal life cycle.
You write about “spirit” and how important a “will to live” is to survival, but are also careful not to suggest that those who died lacked willpower. There’s tension there—can you explain?
I think survival is dictated in some part by resilience or spirit, and that spirit is necessary but not sufficient for survival. That’s how I’d describe it from a public health perspective. In other words, just because you have spirit doesn’t mean you’ll survive—but those who survive absolutely have to have it. All of the men I spoke with had an ability to connect with their bodies in a physical way, in a social way, and in an emotional way—and that may allow them to move forward, allow them to survive. The spirit, the resilience, the will to live, “the ongoing attempt to outrun the virus,” as one man said to me in a previous interview, are characteristics of all of these survivors. I think this is probably true in any horrible situation, whether Holocaust, war, or famine.
None of the men expressed guilt over outliving friends who died of AIDS. Did that surprise you?
This notion of survivor guilt in the context of the AIDS epidemic was first written about by the psychologist Walt Odets, and I think it’s an interesting concept—but there’s very little literature to support that this exists. It was interesting to ask these men about survivor guilt. They talked about being upset, having memories, and missing friends and partners—but also about being happy to be alive. And they believe that their happiness does not indicate disrespect. In fact, their ability to live their lives in a meaningful way is actually viewed as a celebration of those who have died.
In the interviews some of the men express nostalgia for the days when organizations like Act Up and the Gay Men’s Health Crisis united the gay community toward a common cause. Is there a way to rekindle that kind of unity?
As I get older, when I see people in ’80s clothing, it warms my heart, right? But really when I’m able to get past that warmth I think, “Oh my god it was a mess, it was a disaster—those clothes!” For the gay community, too, the ’80s wasn’t as harmonious and beautiful a period as it might seem. Let’s stop trying to tell the story in such a mythological way. People often ask me how to rekindle that kind of movement, but the fact is that organizations like Act Up were the product of a particular moment in time. For gay men who had been promised the possibility of life, freedom, and love, everything got derailed by AIDS—so the timing was perfect to create a movement that brought everybody together. Creating those agencies is what we did to stay alive. I don’t think you want to re-create that any more than you would want to teach children using educational techniques from the 1950s. There are different tools now. Young folks are going to create their own movements around what they’re interested in—and they may be online, in cyber networks, and look different from movements 30 years ago.
You brought together the men you interviewed for a focus group, and they seemed to enjoy meeting one another. Could that be a step toward rebuilding community?
There’s this notion that because of the events taking place in the ’80s, we all bonded together. But really, we all had individual experiences, and a lot of us suffered in isolation. The men I interviewed all spoke about the need to find a place to be together that was not a safer sex workshop or a club. They’ve started an Aids Generation Veterans Association Facebook page, and are expanding the circle to include other people, too. We could wait for [AIDS service organizations] to build something like this, but we’ll be dead by the time they do. So why not build it ourselves, the way we did in the ’80s? Why not build something that meets our needs now? It’s beautiful to see.
You write that Obama is the first president to “openly acknowledge the havoc AIDS had created in the United States, and for gay men.” Have the efforts of his administration made a difference?
Absolutely. The fact that we waited 30 years to have an actual AIDS policy is ridiculous. Whereas George W. Bush only cared about AIDS in Africa, Obama was brave enough to stand up and say there’s a problem in this country. I think any time you have change on the socio-political, structural level, it has an impact on people’s health. I’ve written about how marriage equality is beneficial to fighting the AIDS epidemic. Every time there’s a reduction in stigma, we’ll have better health outcomes. Trying to attack an epidemic solely on the behavioral level—by telling everyone to wear a condom every time—is not sufficient. You’ve got to attack it on multiple levels.
Some of the men you interviewed expressed a sense of alienation from younger gay men, whom they view as incautious and cavalier with regard to HIV. Can the generational gap be bridged?
In every culture there are elders, and the elders should always be the funnel of wisdom to the younger population. In the gay population you have decimation because of AIDS, so you lose a whole generation somehow—and then you have those of us who lived through all of it and are exhausted. But I think there’s renewed interest in not just being exhausted, but in coming out and being helpful. This will require some of the men of the older generation to release their judgment of a young generation of gay men, and the younger guys will need to stop dismissing the older guys. Then you can blend and actually transfer knowledge from one generation to the next.