I often think of a story I read about a man buried alive in a mining accident. He was eventually dug out, and he was fine. But while buried, he said, the hardest thing was that he did not know if anybody was still looking for him. He feared he’d been given up for dead, that others thought there was no use trying to save him.
So it once was for people with HIV. Driven by fear and a desire to survive, we never knew if enough people were looking for us or if enough even cared. In this way, AIDS gave us an acute insight into suffering and injustice—something that those of us who are white gay men would likely otherwise never have had. This has sometimes proved a bitter enlightenment.
The response to the epidemic, back in the ’80s, had a black-and-white clarity: There were many who made up the search parties—activists, caregivers, researchers and donors who had hope on their side—and many more who did not, the uncaring or indifferent for whom people with HIV were already as good as dead.
It has been said that those too hardened to feel compassion for the pain of others allow a part of their own soul to die. This is why many religions hold sins of omission to carry weight equal to sins of commission: To fail to take responsibility for injustice is to accept it and perpetuate it.
Many people with HIV—the poor, prisoners, those who cannot access or cannot tolerate combination therapy—still feel like the man buried alive in the mine. But our response to them is far murkier now as the millennium approaches. Some in the community are all too ready to believe that after 18 years, the worst of AIDS has passed. Friends are either dead or survivors. A sense of urgency is gone. Others have just burned out or given up, unable to maintain the crisis-driven momentum. In the post-protease era, too many have been tempted to circle the wagons close, blocking the ugly reality of the epidemic raging beyond their own campsite. And it is easy for those of us who are fighting the virus in our own body and who have lost so many whom we have loved to feel that we have “paid our dues” and to put away our caring.
The decline in activism, funding and compassion in the late ’90s is as inevitable as the wish to declare AIDS over. I myself have written joyfully here of a newfound sense of “freedom to define my life outside of this disease, reborn from the pain of the past and the fear of the future.” But this freedom is not the same thing as feeling that we’ve done our part, that we don’t have to care, that these masses with AIDS are going to die anyway, so any effort is futile. The challenge is to find in our daily lives new ways to manifest the painful compassion AIDS has given us. And this isn’t just about self-sacrifice; pleasures and blessings are abundant for those who share a struggle for survival, health, justice and peace.
As we end this century, there are those of us who see America—and humanity, for that matter—as teetering on the brink of selfish abandonment. We care about the hatred and violence we see taking over our communities, neighborhoods, schools and families. We’re frightened by an out-of-control consumerism that suffocates the compassion in us all. We’ve grown tired of the greed that dominates our government and our corporations.
AIDS survivors have the responsibility to turn their bitter enlightenment into a meaningful movement for the new century. When the right to health care is added to the U.S. Constitution, let the credit be shared with our activism today. When America’s racism is relegated to a shameful corner of history, let the credit be shared with our activism today. When global values of respect and caring overshadow the escalating degradation of our planet, let the credit be shared with our activism today.
As we enter 1999, let us celebrate the end of the ugliest, cruelest, most genocidal century humankind has ever inflicted on itself, and herald the beginning of what could be a new and extraordinary world. But it is up to each of us to keep hope—and our own souls—alive.