Frontdesk by David Waggoner
After twenty-six years, AIDS is still a health crisis in progress. And having the disease is just one of the problems. Living with its name is another. Years ago, HIV was called GRID (Gay-Related Immune Deficiency). As the disease started to become visibile in other segments of the population, it took on different names and often just as stigmatizing ones. Slim’s disease was one early name that was used in Africa, and still is to some extent. “AIDS” is often used synonymously with “HIV.” The phrase “AIDS victims” is still used in the popular press, the compassionate flipside to “diseased pariahs” but nonetheless patronizing in that one’s personhood comes to be defined by one characteristic, or one disease. The media should know better. If anything, we’re the ones charged with disseminating the truth.
How many years will it take to destigmatize an entire population once that group is given the attributes of a much maligned disease? Let’s hope it’s shorter than the decades it took The New York Times to replace the use of the word “homosexual” with “gay,” and then only after twenty years of angry letters to the editor bemoaning the archaic and stigmatizing usage. Understanding the powerful effects that naming can have is crucial in stemming the stigma that keeps the pandemic alive. If I only had a dollar for every time someone spoke ill of someone living with HIV/AIDS, I could fund the cure for this terrible plague single-handedly!
Reichen Lehmkuhl, this month’s cover story interview, understands the power of naming. On CBS’s The Amazing Race, he broke ground, with his partner Chip, as the first openly gay couple to win the reality competition (though the network censored the two’s kiss when they celebrated in the winner’s circle). These days, Reichen has been speaking out about the U.S. military’s gag rule on gay men and lesbians naming themselves openly as they serve as well as personally enlisting himself in an HIV vaccine clinical trial.
Speaking of spelling bees of another kind, the great American tradition of making quilts has been naming women and their causes since colonial times. And the tradition continues within our time. In this month’s Gallery section, Annie Buckley documents the work of Andrea Bowers, who explores how activists are continuing to “sew” together the many lives taken from us. The NAMES Project originated as a few dozen panels, and now has grown to tens of thousands of patchworked emotions, ideas, tributes, and works of contemporary folk art. Early on, the Quilt helped to prevent those affected by AIDS from being just another number in a dehumanizing chorus of statistics. Quilters returned to their loved ones their names, and their humanity.
The entire Quilt was displayed in Washington, D.C., in 1996, but is now too large to practically be seen en masse. Instead, it is now disseminated by the AIDS Memorial Quilt through the efforts of women like Jada Harris, who curates the Quilt, and Gert McMullin, one of the first seamstresses on the original Quilt and who continues her volunteer work to this day. Her handiwork reminds me of my great-grandmother’s artistry in St. Joseph, Missouri: Minnie (short for Wilhelmina) remembered the names of her German-born parents and their ancestors during a time (World War I) when it was not a popular thing to do. And so all the “relatives” of those who have died are remembered in an ongoing and living history project.
As more and more community-based organizations are hosting displays of panel blocks, The NAMES Project is not just America’s largest Quilting Bee, it is America’s longest-running AIDS educational and visual arts project. Already seen by millions, the Quilt has inspired and motivated those communities needing it the most.
September 2007
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