After 25 years, AIDS quilt continues to mend the loss of loved ones

McClatchy NewspapersJuly 19, 2012 


A nearly complete block of panels in memory of Samara Jones, who died of AIDS complications in January 2008 at age 32 is seen in Washington, D.C. Her mother, Sheila Jones, of Atlanta, has worked on the panels for nearly a year, and hopes to complete the remaining two by Samara's birthday in September. The six complete panels will be on display in Washington this weekend ahead of the International AIDS Conference, which begins on July 22.


— It’s won an Oscar and was nominated for a Nobel Peace Prize. At 1.3 million square feet, it would take up nearly half the office space in the new One World Trade Center tower in lower Manhattan. It received a “Save America’s Treasures” federal grant to preserve it for future generations.

When the AIDS Memorial Quilt was first displayed on the National Mall in October 1987, it included 1,920 panels. Now the quilt is too large to display in its entirety, and will be shown throughout the capital this weekend and next week during the International AIDS Conference in Washington.

Each of its 3-foot-by-6-foot panels – about the size of a human grave – tells the story of a person’s life with the smallest biographical details. Favorite pieces of clothing. Stuffed animals. Poems. Paintings. Photographs.

But sewn together, the quilt’s 48,000 panels convey the enormity of an epidemic that has killed about as many Americans over three decades as there are residents of the nation’s capital – and millions more worldwide.

Julie Rhoad, the executive director of the NAMES Project Foundation, an Atlanta-based nonprofit organization that serves as the quilt’s custodian, calls it “the original piece of social media.”

By literally stitching together the stories of people who died of AIDS, it brought together families and friends to bond over their shared grief and create a lasting memorial.

“In fabric and thread, we connected people and built community,” Rhoad said in an interview in the cavernous Washington National Cathedral, one of 50 locations around the nation’s capital where the public can view the quilt. “Hopefully, it will inspire the next generation of this movement to end AIDS.”

Much has changed in 25 years. When the quilt project began, few Americans understood that AIDS was transmitted not through casual contact, but through unprotected sex, transfusions of HIV-tainted blood or injection with HIV-contaminated needles, or from an infected mother to her baby. And many mistakenly thought AIDS was a disease that affected only gay men and injection drug users.

Now, the treatments allow people to live for years with HIV, the virus that causes AIDS, at undetectable levels in their systems. The FDA this month approved a drug that has been shown to prevent HIV transmission. And researchers and activists are hopeful that a vaccine is not far away.

But as the AIDS Quilt demonstrates, it’s come at an enormous cost. More than 600,000 Americans have died of AIDS, according to the national Centers for Disease Control and Prevention. More than a million Americans live with HIV. And while better treatments have made the disease more manageable, it killed more than 17,000 Americans in 2009, the most recent figure available.

Rhoad said the quilt helps remind people that AIDS has not yet been overcome.

“It says these people went on and made the ultimate sacrifice along this journey of trying to end AIDS,” she said.

One of them was Samara Jones.

Jones contracted the virus at age 15, and then devoted her life to educating others about HIV prevention as a volunteer for AID Atlanta. She died in January 2008 at age 32.

“I’ve made peace with the fact that it was her time to leave here,” said her mother, Sheila Jones, speaking by phone from Atlanta. “She was taking medicine. She loved life. She took the medicine because she wanted to live.”

Jones, who also has a 25-year-old daughter and an 18-year-old son, has spent nearly a year creating an entire 12-foot-square block of panels in memory of her daughter. Her mother and nieces have contributed to the project.

“A lot of emotions are put into it. A lot of healing goes into making it,” she said.

The six complete panels of Jones’ block will be on display on the National Mall during the next week. Sheila Jones said she hopes to finish the remaining two by the end of August. Samara’s birthday would be in September.

“I feel a sense of closeness to her all over again,” she said.

While working on the quilt has been an important part of her healing process, Jones said she understands why some people who make panels in memory of their loved ones find it hard to give them up.

“It’s not something another mother should have to go through,” she said.

Jones doesn’t need to worry about what will happen to her part of the quilt.

Volunteers from the Human Rights Campaign, a Washington-based gay-rights organization, gathered on the mall on a sweltering summer day to lay the foundations for the quilt display. A few blocks away in a storefront in downtown Washington, Chris Locklear was getting Jones’ quilt ready to take to the mall.

“It means a lot to her,” said Locklear, who knows Jones and has worked with the NAMES Project for three years.

Caring for 54 tons of quilt is a labor of love, and Gert McMullen has been doing it for 25 years.

“All of my friends are on that quilt,” she said, speaking by phone from Atlanta.

When the quilt is not on display somewhere in the country, it is stored on shelves in Atlanta that are arranged much like a library, McMullen said. Throughout the year, the NAMES Project receives requests to borrow pieces of the quilt. They’re boxed up and shipped via FedEx or UPS, she said.

Transporting the quilt to Washington for the National Mall display, however, required shipping by truck.

Though it’s handled very carefully, the quilt does sometimes get dirty or damaged. McMullen handles the repair work. It can’t be washed, so she and others must clean it using what she calls the “shake and bake” method – they shake off the dirt, and it’s hard work.

“Museums say we’re doing a good job,” she said.

The quilt needs a permanent home, McMullen said, but no one yet knows where it might be. More than 15 million people worldwide have visited the quilt, and it has raised awareness about AIDS, as well as funding for prevention and treatment efforts.

“It’s one of the biggest gifts of healing the world has ever seen,” she said.

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