Collecting an Epidemic: The AIDS Memorial Quilt

Editor’s Note: This is the fourth post in a series exploring the 30th anniversary of HIV and AIDS. Beginning on June 3, the National Museum of American History will mark the anniversary of the emergence of the HIV and AIDS epidemic with a three-part display and companion website. This blog series provides additional context and includes the perspectives of people directly involved in the history the museum is documenting.

89-20184The AIDS Memorial Quilt on the Ellipse, 1996.

How does one go about collecting an epidemic? A disease is not a tangible entity like a stethoscope or a medicine bottle. Smithsonian curators have always been interested in the history of disease: the medical collection includes artifacts related to smallpox, diphtheria, cholera, and polio. My area of expertise is surgical instrumentation. Show me a 200-year-old amputation set or a 21st-century heart assist device, and I’m a happy camper.

I was attending the annual meeting of the American Association for the History of Medicine in New Orleans in 1988, when a small band of museum curators, archivists, and historians met to talk about recording and collecting material related to the AIDS epidemic. The AIDS epidemic was and is a unique opportunity for historians of medicine to document an epidemic from its beginnings.

The majority of AIDS material appeared to be ephemeral: posters, pamphlets, red ribbons, and photographs. It seemed to me that the most obvious artifact was the AIDS Memorial Quilt, which was just beginning to emerge as one of the symbols of the epidemic. A piece of the quilt can be found in our museum today.

AIDS quilt panel Roger Lyon
The National Museum of American History was elected to collect this panel.

I saw the AIDS Memorial Quilt for the first time on a sunny day in the autumn of 1989. It was laid out on the Ellipse, a grassy area in front of the White House. Walking up and down the rows of panels, I remember thinking how large the quilt appeared.

Strolling silently, I took in the creativity of individual panels, the bright bold colors and textures, pieces of fake fur and twinkling sequins. Some of the panels were made from the personal belongings of the people they memorialized: toe shoes, cooking utensils, teddy bears, even pieces of clothing, neckties, and pajamas. Each panel was a very personal tribute to a victim of a frightening and incurable disease. The panels were obviously lovingly crafted, each one conveying the person’s interests and style, celebrating the lives of dear friends and loved ones.

A few of the quilt panels were dedicated to famous personalities like Rock Hudson, Liberace, and Perry Ellis. Mostly, the panels were just ordinary folks: men, women, children, babies, musicians, doctors, chefs, dancers, mothers, fathers, sisters and brothers, some anonymous. I remember looking at hundreds of birth and death dates. It was so incredibly sad; my generation seemed to be dying.

89-20237The AIDS Memorial Quilt with the White house in the background, 1986.

The AIDS Memorial Quilt is an extraordinary artifact. However, the Quilt's size and plethora of materials pose challenges for curators and conservators. The project brought to mind an important question: what other artifacts could we collect to represent the AIDS epidemic?

That first day I collected a few small artifacts, a red ribbon that had become one of the symbols of the epidemic, a few buttons, including a purple and yellow button imploring "FIGHT AIDS / NOT PEOPLE WITH AIDS." The most poignant artifact, a white Styrofoam cup with a green candle, came from a National Museum of American History staff member who carried it during the candlelight vigil held that same weekend. Some of these artifacts are now on display in HIV and AIDS Thirty Years Ago, currently on view in the museum.

AIDS buttons collected by the author over the years.

Over the years, I saw the Quilt several times, watching it grow larger as the deaths from AIDS increased. I was there for the Quilt's last appearance on the National Mall, a beautiful October morning in 1996. The Quilt stretched out across the grass on the National Mall from 14th Street to 3rd Street. It was enormous, so much larger than when I had first seen it seven years earlier. That day in 1996, I had a special mission. I hoped to find the panel representing my cousin Ira who had recently died of complications from AIDS.

Finding Cousin Ira turned out to be easy. The NAMES Project Memorial Quilt Organization had books alphabetically listing each person with a panel dedicated to his or her memory. I walked up to one of the tables and gave the volunteer my cousin's name. The volunteers handed back a piece of paper with the coordinates for finding his panel.

Come to find out, Cousin Ira's panel is shared with eight friends from New York City. The panel is simple in design with organic free-form splotches of bright colors appliquéd onto a white background. The panel is signed and dated "may 1996 love, patti s. fullerton."

Cousin Ira's panel. He is the second one down on the left.

I have never met Ms. Fullerton. But just in case she is out there reading this, I would like to thank her for looking out for Cousin Ira.

Judy Chelnick is Associate Curator for the Division of Medicine and Science at the National Museum of American History.