"I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need infighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue," said Roger Lyon in 1983 in testimony before Congress. An AIDS activist from the Bay Area, Lyon spoke with two others afflicted with the disease, who recounted their experiences.
Twenty-seven years later, on this World AIDS Day, we know much more about Acquired Immune Deficiency Syndrome and how to treat it, with new medications being discovered regularly. It still is a global epidemic; according to the United Nations, there were 2.6 million new cases and 1.8 million AIDS-related deaths worldwide in 2009. While these numbers are down from 2004, the figures are still staggering. In the United States, the Center for Disease Control reported in July 2010 that over 55,000 Americans are infected each year with HIV and over 18,000 die from AIDS-related causes.
Tragically, Lyon died the year after giving his testimony, but his memory and contribution to the fight against AIDS survives at the National Museum of American History. In 1990, the museum added his section of the AIDS Quilt to the collections. The quilt was conceived by San Francisco gay rights activist Cleve Jones in 1985 (you may remember the name from Emile Hirsch's portrayal of Jones in Milk), who recalled the idea's conception to Frontline:
By November of 1985, almost everyone I knew was dead or dying, and a few days before Nov. 27, I was walking up and down Castro Street with my staple gun putting up posters reminding people of the march , and I picked up a copy of the San Francisco Chronicle, and there was a headline saying that 1,000 San Franciscans had already been killed by AIDS. I remember standing on that corner of that intersection and looking around and grasping for the first time that of those thousand, virtually every one of them had lived and died within six blocks of where I was standing, and there was no evidence of it. …
So the night of the candlelight march, Joseph and I had stacks of cardboard, lightweight cardboard placards and sacks full of magic markers. We asked everybody to write down the name of one person they knew who had been killed by AIDS. People were ashamed to do it. They would put initials or just the first name, and then finally one guy took two pieces of paper, taped them together, and in big block letters wrote, "Thomas J. Farnsworth Jr., my brother -- he's dead."
There were thousands of people standing there, almost silent. I walked with the crowd, and I could hear people whispering and looking at the names and reading them and saying: "I didn't know he died; when did he get sick? I went to school with him; I didn't know he was sick. I didn't know he died." I was just overwhelmed by the need to find a way to grieve together for our loved ones who had died so horribly, and also to try to find the weapon that would break through the stupidity and the bigotry and all of the cruel indifference that even today hampers our response. I got to the edge of the crowd, and I looked back at that patchwork of names on the wall, and I thought, it looks like a quilt.
From there, the idea became an actual quilt and began touring the country with thousands of people donating their own 3-foot-by-6-foot remembrances of lost loved ones. "The Quilt is significant both in the way it facilitated these changes and on its own terms. It is the largest, most complicated example of folk art in the United States," says Katherine Ott, curator in the history of medicine and science at the American History Museum. "Furthermore, it was a new kind of memorial; one that was collectively created and movable and shape-shifting, instead of the classic mausoleum sort of thing or sober mourning statue."
While the Lyon quilt is not on view currently, you can read the text, a quote of his congressional testimony, on the museum's site.