One thousand years from now, when AIDS is no more than a blip in the cosmic timeline, history will tell the story of my generation — the AIDS Generation.
Undoubtedly, what will be remembered is the loss of life experienced both here in the United States and globally — a loss of more than half a million in our own country and tens of millions throughout the world, mostly in the African continent. These stories also should recall that governments turned a blind eye to the plague that was striking down young men and women in the prime of their lives. This history, if accurately portrayed, will show that even after effective treatments were available, millions around the world were denied these life-saving tools in the name of corporate profit. And these retellings must tell of the ignorance and hate shown by so many to those who were grasping for every breath of life.
But history must also tell the story of bravery — of bands of people who came together to fight for their lives — the stories of ACT UP and GMHC, and the myriad other grassroots efforts that took hold across our nation. If it is truthful, and inclusive, history will also will tell less glitzy stories than the ones that have been depicted on film and on television — stories of less well known men and women who with tenacity and courage, a spirit, and determination, raged a battle against a ruthless enemy, even if they were not getting arrested during demonstrations on Wall Street, sitting on panels at international conferences, or having their struggles depicted on stages around the world. And all of these portrayals, flashy or not, will shed a more favorable light on our humanity and the life of experiences of my generation — the AIDS Generation.
For the last several years I have spoken often of the AIDS Generation — those of us who came of age at the height of the epidemic and for whom the epidemic has defined our formative years, and, in fact, has defined our entire lives. I have shared remarkable stories that have been shared with me by a set of inspiring men. And while recognizing and honoring the many of us who were cut down way too early, I have strived mostly to tell the story of those of us who survive to this day and into our middle age — we — the long-term survivors.
Some would have us believe that the lives of long-term survivors are defined by sorrow, and weakness, and isolation. There is no doubt that many of the AIDS Generation face myriad life challenges associated with living and aging with HIV, that include managing the complexities associated with health, our trauma of a life defined by a wretched disease, the navigation of our daily existences, and our reckoning of being older adults, when we never expected to reach this point of our lives. Researchers, all to eager to make a name for themselves and many of whom have no sense of what it means to have survived with HIV for decades, are all too happy to characterize us through a lens of deficit — as weak and sickly, offering no solution to our ordeals — not so differently than the way conservative Americans have dealt with us for decades.
Despite these depictions, which function more to pathologize and stigmatize than to support long-term survivors, we continue to thrive. This is because, we, as generation, have demonstrated a fortitude, a grit, a determination. Quite simply we have led lives defined by human resilience — even in the bleakest moments of this epidemic, we mustered the power to carry on, to look ahead, to fight this disease physically and emotionally. Every day we strove to outrun this disease. This is the lens I use; this is how I tell our story; this is how we should be remembered.
Such bravery is often reserved for depicting veterans of wars. But, as my friend Sean reminds us on an almost daily basis, we too are veterans of a war — of a war raged by a virus on our bodies and by a society that put its ignorance and greed ahead of our needs.
Yet we carried on. And it is for this reason that the resilient lives of long-term survivors must be celebrated. On World AIDS Day, we often dwell on the loss we have all faced. We honor those fallen to this disease, and rightly so. But in those commemorations we must also direct our minds to one of celebration for a generation that against all odds has managed to survive and more importantly to thrive. This is our legacy and it must be celebrated.
Perry N. Halkitis, PhD, MS, MPH, is professor of global public health, applied psychology and medicine at New York University. He also is author of The AIDS Generation: Stories of Survival and Resilience. He was featured on the September 2013 cover of POZ and was a 2015 POZ 100 honoree. Follow him on Twitter at @DrPNHalkitis and go to perrynhalkitis.com for more.