En español | Years ago, Lonnie Payne-Clark lost his life partner, twin brother and brother's partner to AIDS. To remember them, the 68-year-old Napa, California, resident is sewing a 3-by-6-foot fabric quilt block in their honor. Payne-Clark has used small squares in shades of yellow and green to signify light and life, and he plans to incorporate gold squares in the corners with birth and death dates.
With this quilt panel, Payne-Clark, a long-term HIV survivor, will join tens of thousands of people who have contributed to the largest community art project in history: the AIDS Memorial Quilt.
The quilt is a living monument to people who have died from AIDS — a syndrome that develops after the progression of HIV, a virus that attacks the body's immune system. So far more than 700,000 Americans have died from AIDS and over 1.1 million people are living with HIV. The disease disproportionately impacts men who have sex with men as well as Black and Latino communities.
More than 50,000 fabric panels make up the quilt, commemorating upwards of 105,000 people who have died from AIDS-related illnesses. Fabric panels are personal tributes designed and created by relatives, friends and loved ones to honor those they've lost to the disease. The fabric squares can be colorful, somber, funny — decorated with stitched-on hearts, painted portraits, hand-drawn notes, favorite pieces of clothing, disco balls, and teddy bears for infants and children. Together, they reflect the human toll of the epidemic.
After being shipped to the quilt headquarters in the San Francisco Bay Area, Payne-Clark's panel will be sewn into a standard 12-by-12 block to join a patchwork of memory. Stewards of the quilt, like Payne-Clark, who is a board member for the National AIDS Memorial, say their mission is to help loved ones heal, combat stigma and raise awareness about the ongoing epidemic.
"By creating panels, I am continuing to share their stories,” Payne-Clark says of his loved ones. “I am keeping their names and the energy that inhabits their souls alive within me.”
Healing through remembrance
Though the quilt was created decades ago, it's still a dynamic and important symbol of the battle against AIDS. On June 5, for example, Payne-Clark and other volunteers displayed 40 panels at the 10-acre National AIDS Memorial Grove in San Francisco's Golden Gate Park, marking 40 years since the first cases of AIDS were reported.
Each year, selected panels are displayed by partner organizations and businesses, often as part of World AIDS Day on Dec. 1 and Pride Month in June. All the quilt's squares can be viewed online through the National AIDS Memorial's interactive digital exhibit, where visitors can search for a friend or loved one's name or browse the squares.
The quilt's origins trace back to November 1985, when gay rights activist Cleve Jones and other marchers taped placards bearing the names of those who died from AIDS on the walls of the San Francisco Federal Building. Inspired by this wall of names, Jones and a handful of others began to make and display grave-size quilt panels at a storefront to remember their loved ones and demand action from those in power.
At the time, many of the organizers’ friends were dying each week, and the government and some members of the medical establishment failed to help or refused to provide care. Some critics blamed victims — the majority of them gay men — for their own suffering. Families often kept the cause of death secret, and friends and lovers were left out of memorial services. In the midst of this loss, there was a need for a safe space to mourn and bear witness, says Gert McMullin, 66, of Alameda, California. McMullin, known as the “Mother of the Quilt,” helped sew the first panels after many of her friends died; she continues to care for the quilt today as a conservator and production manager .
"I felt like I was home,” McMullin says, remembering the first meetings of the group making quilt squares. “I was sad all the time … but it gave me a place to go that I could maybe not think about it so much and in turn help other people get through their misery and grief.”
A powerful advocacy tool
By 1987, the quilt had grown to nearly 2,000 panels. During the National March on Washington for Lesbian and Gay Rights that year, organizers spread the quilt across the National Mall in Washington, D.C. The stunning display appeared on TV screens across the nation, and heart-wrenching images of mourners as well as panels for children, women, people of color, and folks of varying sexualities revealed the scope of the disease. That weekend, half a million people visited the fabric memorial.
"The quilt's power lay in its adoption of a traditional American craft — a quilt — to make clear that those it memorialized were also part of the American family,” says John-Manuel Andriote, 62, an Atlanta-based health journalist and author of Victory Deferred: How AIDS Changed Gay Life in America.
As the AIDS crisis continued, the quilt inspired similar projects in dozens of countries and returned to the National Mall numerous times. At its final showing in October 1996, the quilt's nearly 40,000 panels spanned 11 blocks, carpeting the entire lawn.
The quilt and what it represents has continued to evolve. In 2013, the Call My Name project added panels that drew attention to the disproportionate impact of HIV/AIDS on African American communities. Additional storytelling projects like Surviving Voices put the spotlight on transgender individuals, women and activists at the forefront of the fight to lower infection rates and increase support to underserved communities.
Colorful and striking in its size and scope, the quilt provides an opportunity to merge grief and mourning with collective action and advocacy. Exhibitions help connect communities with local nonprofits and health centers, destigmatize HIV survivors, and educate people on testing and treatment options. Over the years, exhibitions of the quilt have helped raise millions of dollars for direct service organizations for people living with HIV and to overcome barriers to testing and treatment including poverty, stigma and a lack of access to affordable health care. The “mobile cemetery” of the quilt allows for shared sorrow and joy but also serves as a reminder of the need to continue work to eradicate HIV/AIDS, Payne-Clark says.
Today, people continue to add squares to represent those they've lost, Andriote says: “It helps people heal and find peace by reminding us that our loved ones are not forgotten, and that our losses matter.”
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Lauren Krouse is a contributing writer who covers health, domestic violence and self-advocacy. Her work has appeared in Women's Health, Men's Health, Prevention and Self.