“The Last One” is the title of a documentary about the Names Project’s AIDS Memorial Quilt, airing Monday on Showtime to mark World AIDS Day. After all these years, it’s tragic that the title is still only aspirational.
The film, directed by Nadine C. Lacostie and produced by Annie Groeber and Connie Grazia, takes the title from just one of the 48,000 panels that now comprise the quilt. That panel, sent to the project in 1988, simply reads, “The Last One,” as in the hope that eventually, this extraordinary memorial to the lives lost to AIDS will outlive the need for its existence.
If the whole idea of the AIDS Memorial Quilt seems like ancient history, it’s not just because of its diminished presence in the news. It’s because, despite the fact that there are 50,000 new infections of HIV in the US every year, there is a dangerous public perception that somehow AIDS has been “cured,” or that contracting HIV isn’t really a big deal.
Of course, nothing could be further from the truth, but it’s not the first time that’s happened since AIDS was first identified in 1981. The entire history of the pandemic is riddled with misinformation among the general public and, worse, among political leaders. President Ronald Reagan never said the word AIDS “until more Americans had died of this disease than had died in the entire war in Vietnam,” says Names Project co-founder Cleve Jones.
“Homophobia kills,” he says later in the film. “And it doesn’t just kill gay people.”
Yet just last week, the New York Times felt the time was overdue to get rid of the ban on gay people giving blood and editorialized to that point.
In the early years of the disease, you were a pariah if you were a member of one of the four H’s, as they’re called in the film: homosexual, Haitian, hemophiliac or heroin abuser. The disease was called several things before it was labeled acquired immune deficiency syndrome. One was gay related immune deficiency, but newspaper headlines latched on to “gay cancer,” which stuck long after it was proven to be inaccurate.
Today, gay men account for 15 percent of all new HIV infections worldwide; heterosexuals account for 80 percent.
You could say that the AIDS quilt had its roots in Jones’ childhood. Whenever he was ill as a kid, his mother would bring out a special quilt made by his grandmother from her husband’s old pajamas.
“At a very early age, a quilt to me embodied love,” he says, pointing out its “obvious symbolism of a quilt not throwing anything away.”
During the 1985 candlelight march marking the 1978 assassination of San Francisco Supervisor Harvey Milk, participants wrote the names of some of the people who’d already lost their lives to AIDS on large placards, which they affixed to the exterior of the Federal Building. As Jones looked at the squares, they put him in mind of a quilt,and the idea for the AIDS quilt began to form.
Jones and Mike Smith, now director of the AIDS Emergency Fund and the Breast Cancer Emergency Fund, founded the Names Project in 1987, the year of its first display on the National Mall in Washington, D.C. By the time it was displayed on the mall in 1996, the quilt had grown to more than 21,000 panels.
For many years, the quilt’s home was a bustling workshop on Market Street near San Francisco’s Castro Street. If you walked through the always-open door, you’d likely encounter Gert McMullin, a spindly blond firecracker who became involved with the quilt after spontaneously joining a long-ago candlelight march and has never left. Known as the Hand Maiden of the Quilt, she moved to Atlanta when the quilt outgrew its San Francisco homes in 2002. She’s made seven panels so far for her late friend Roger Gail Lyon, who famously testified before a congressional committee in the 1980s with the historic plea: “This is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.”
Not long after, he died.
One of the most interesting elements of the film is how much the makeup of Names Project staff and volunteers has evolved over the years. In 1996, when I did volunteer press and communications work for the D.C. display, there certainly were many people of color and women, but nowhere near the number you’ll see today. Why? Because the infection rate among women and African Americans was still smaller than other categories. Today, African Americans make up 44 percent of all new HIV infections in this country.
In the early years of the disease, women found it difficult to find services or support, according to Patricia Nalls, founder of the Atlanta-based Women’s Collective and a person living with AIDS who lost both her mother and infant daughter, Tiffany, to the disease. These days, so many women are involved with the quilt that there are now Hand Maidens of the Quilt, plural, in addition to the indefatigable original, McMullin. The Names Project CEO is Julie Rhoad.
An AIDS diagnosis used to be considered a virtual death sentence, but through research and the development of new medication, more and more people in the U.S. are “living with AIDS.” Still, the medications are expensive, and 64 percent of people with HIV or AIDS are not on medications in this country. Think about how many others around the world are without medical support.
Medical advances in the U.S. have also inadvertently led to the incorrect public perception that AIDS is no longer such a big deal. That’s one of the reasons that people under 24 comprise a full quarter of new infections every year. Younger generations who didn’t live through the early years of the disease may have access to more accurate information about how the virus is transmitted and the costs of living with AIDS, both personal and financial, but that doesn’t mean they’re paying much attention.
Although the quilt is called the AIDS Memorial Quilt, its original intent, says Jones, was to be a weapon for public and political awareness.
David Gere, UCLA professor, author and former Bay Area dance critic, recalls the idea behind the first display in Washington was with the hope that it would “actually have political impact.”
It didn’t at first, but over the years, as more and more Americans either know someone who is HIV positive or who are positive themselves, the quilt has slowly yet still partially fulfilled that original intention.
Gere has continued to fight against AIDS, through books, his teaching and public appearances, as have Jones, Smith and McMullin, among many other early pioneers, now joined by thousands of new soldiers every year. They are making a difference, but the disease still continues to infect thousands every year, and to claim more lives as well. And the sad fact will always remain: We could have done more earlier.
No wonder Cleve Jones says, “I’ll never stop being angry.”