City of Survivors

Reflections on resilience at NAPWA’s Staying Alive Conference in New Orleans
by John-Manuel Andriote

In early December the garlands and lights framing the doors, walls and windows around the French Quarter give it the same festive garishness as a Roman piazza at Christmas—or New Orleans at Mardi Gras.
In fact, said the proprietress at the Royal Street souvenir shop where I decided to do a New Orleans-themed holiday, the purple, green and gold of Mardi Gras are reborn annually at this time of year as Christmas ornaments.

That seems fitting. Colorful baubles and sparkly beads, festive music and a bit of outlandish behavior seem natural accompaniments to celebrations of life.

And both Mardi Gras and Christmas are, above all, about celebrating life. The pre-Lenten Mardi Gras asserts life in the face of death (it’s no coincidence that Mardi Gras floats feature masks of Death), while the evergreens used to mark Christmas symbolize its promise of everlasting life.

I bought ten dozen (yes, 120) strands of Mardi Gras beads to decorate my little Christmas tree. I called it my Tree of Life—a symbol of the resilience I felt in New Orleans, my own resilience a year after my HIV diagnosis, and the resilience of the hundreds of us HIV-positive folk attending the National Association of People With AIDS (NAPWA) ninth annual Staying Alive conference, at the New Orleans Convention Center Marriott, from December 6–10.

Staying Alive is the only national conference in the U.S. organized specifically by and for people living with HIV/AIDS. This year was the largest ever, drawing more than 400 attendees. NAPWA’s Sean Dwyer pointed out that more than half the attendees were people of color, many were women and people with HIV/AIDS over age fifty, and about a third were from Southern states.

The program featured a variety of workshops to share information and to empower people to take an active role in their own medical care, and to be models of “visible positive leadership” for service agencies, planning councils and others living with or affected by HIV/AIDS.

But the real essence of the meeting was summed up in the words of one of Thursday’s luncheon speakers. She said, simply, “You are survivors in a city of survivors.”

What New Orleanians, and those living with HIV, know about survival

Even before Hurricane Katrina, New Orleans knew a good deal about survival. So much of its music and food and general joie de vivre can be traced back to the African and Caribbean ancestors of many of the city’s residents.

As I have observed in Nigeria and in Haiti, there is an inverse correlation between the depth of poverty and the height of artistic expression. In places where food is scarce and disease is rampant—where death looms constantly—music is happy and colors are bright.

Joy and the determination to live echo in the music and glow in the paintings, rising out of a deep place in the soul that is able to transcend immediate circumstances and connect with the eternal.
It’s there, in that place, that one chooses to believe (or doesn’t) that he is valued and valuable. The belief that one is valuable and that life is worth preserving is the core of the resilience.

And resilience, nothing less, is what it takes to rebuild one’s home after a catastrophe like Katrina—and to live in the face of a devastating medical diagnosis like HIV infection.

In post-Katrina New Orleans, you feel a tremendous surge of resilience, of life and the will to live. Here it comes from the conviction that life in this place is uniquely valuable and worth preserving. You feel it in the live jazz, blues and rock music pulsating out of Bourbon Street’s bars. You see it in the ready smiles of residents who carry on in spite of what they have endured.

This is why it made so much sense to hold the Staying Alive conference in New Orleans. People with HIV/AIDS and post-Katrina New Orleanians have much in common—and a great deal to teach others.

Celebrating life in the face of death

Day two of Staying Alive featured a New Orleans “second line” march of celebration and remembrance.
Second line marches nowadays can mark any special occasion in New Orleans. The marches are descended from traditional New Orleans’ jazz funerals—which themselves descend from African village funerals—in which a brass band (including trumpets, trombone, tuba and saxophones) leads family and friends in a procession to and from the graveyard. The dirges played on the way to the graveyard give way to the raucous brass band sound on the way back. The “second line” refers to bystanders and others who are drawn by the music to join the dancing crowd moving along the street.

As in the jazz funerals, our second line march gives Death its due of sadness and sorrow as we remember our lost loved ones. But then we joyfully celebrate the triumph of life over death. The defiant celebration of Mardi Gras is fulfilled in the giddy promise of Christmas.

A couple hundred of us—black, white, Latino, Asian, men, women, straight, gay, young, old, middle-class and struggling—march and dance down the block behind our brass band, decked out in Mardi Gras beads, waving white hankies, dancing and laughing and carrying on.

What a sight we must have been! Here we were, a motley crew of us—some in wheelchairs, many with the telltale gauntness caused by protease inhibitors, most of us living with a deadly virus in our bodies—parading our audacious belief that life is worth living and our lives worth saving.

Our grand marshal was longtime HIV/AIDS activist Jeanne White, mother of Ryan White, the Indiana teenager who contracted HIV from blood products used to treat his hemophilia. Even before Ryan died at age eighteen, in 1990, Jeanne White was speaking out to help make sure no other mother’s child would suffer the stigma and discrimination her own son did.

There was much buzz throughout the conference about whether Congress would finally reauthorize the Ryan White CARE Act, named after Jeanne White’s son. The day before the march, December 6, would have been Ryan’s thirty-fifth birthday.

There couldn't have been a more fitting place for us to meet than New Orleans. We were indeed survivors in a city of survivors.

As people who have faced our mortality and our fear and lived to tell about it, our challenge is to keep alive Mardi Gras’ defiance of death and Christmas’s promise of ever-renewed and triumphant life.
We people with HIV/AIDS aren’t afraid to deck our halls or bedeck ourselves with beads and bangles and act a bit outlandish in our exuberance. Like the city of New Orleans, we know better than most how to celebrate life because we also know how fragile and precious life is.

John-Manuel Andriote has reported on HIV/AIDS since 1986. His book, Victory Deferred: How AIDS Changed Gay Life in America, won rave reviews. In May 2006, Andriote described his 2005 HIV diagnosis in a Washington Post commentary, and discussed on National Public Radio why “knowing everything” about HIV/AIDS isn’t enough to avoid infection.

February 2007