As the first AIDS generation grows older and its experiences are relegated to the back pages of history books, survivors try to find meaning in why they’re still here and their friends are not. There has never been a real answer for them. They bear invisible scars, hidden beneath rivers of tears, that refuse to heal. But to pretend they don’t exist can only magnify the grief that survivors have desperately tried to suppress.
In a sense, survivors have been forced back into the closet, too embarrassed or afraid to speak about survivors’ guilt or post-traumatic stress disorder and with no community to be in. During the time when AIDS was seen as a certain death sentence, people with the disease and their supporters took it upon themselves to build their own communities, without which advocates like Peter Staley would never have been able to demand proper attention to the epidemic.
Thanks to films like David France’s Oscar-nominated How to Survive a Plague, a new generation can see what it was like during the building of these communities, highlighting how activists forced government, corporations, and organizations to address the crisis. ACT UP was one of many groups that took the problem into their own hands, with activists Larry Kramer, Mark Harrington, Spencer Cox, Garance Franke-Ruta, Mathilde Krim, and Staley rising above the crowd. Even to this day, they won’t call themselves heroes.
“I consider the movement heroic,” Staley said at a screening of the film for Collective Effect at AIDS Project Los Angeles. “I consider it a truly communal moment. The power that any of us individually was able to break through only happened on the foundation of community. If we had acted independently, we would have gotten nothing done. We are part and parcel of America’s great social justice movements. They might not have liked us at the time, but it disturbed them and it made them uncomfortable to know that their citizens were being left to die. We definitely shook them up in that regard.”
It could be argued that such community has been slipping away over the last decade. With gay ghettos decreasing in importance and gay and lesbian centers becoming less central to gay people’s lives than they used to be, have we become victims of our own success? Staley, considered by some to be a gay Martin Luther King, went on to say that by demanding we be integrated into the American fabric, over time, we lost our own sense of community.
“I think we have to create institutions that bring us together and start conversation and demand community. We have been working to do that in New York, and I think if you want community, you have to fight for it,” Staley added.
The refuge we once had to talk to our brothers and sisters who are like us, and share our experiences with HIV to link generations and expand awareness now seem to be mere memories. So where does that leave the survivors?
In a recentNew York Timesarticle, it was reported that half of the people living with HIV or AIDS in New York City are over 50 years old — and according to the city health department, almost three quarters of them live alone. Not only do they have to worry about paying for the medication they need to survive, but they are often left feeling isolated with no one to talk to. Survivors’ guilt and PTSD are recurring themes in their lives, leaving little room for the healing process. If there is no one to talk to who understands their problems, how can they restore their place in the community?
“I think of ACT UP as the last of the greatest social movements of the 20th century.” Franke-Ruta said. “The individuals who were fighting and the individuals who would benefit from the transformed society were the same people. Those kinds of movements tend to be more successful because they have the moral weight of the individual taking the risk — the demand of their story, that can’t be ignored.”
The next chapter of HIV and AIDS is here. The fight has now been pushed to the back pages, yet the question has always been, How do you heal? According Franke-Ruta, you don’t.
To see friends dying on a near-daily basis over the course of years has created nightmarish flashbacks for survivors. But that the community created during the epidemic is the very thing needed to heal these invisible scars. If there is ever a time for community, it is now.
The path to take moving forward is built on the path we walk today.