Picture a quilt 180 times larger than the one on display this week at St. Michael’s College. Measure it in football fields, in field houses, in individual panels — however your mind can picture 300,000 AIDS deaths in America. Then remember that fewer than one in 10 AIDS cases happens in this country, that most of the pandemic is happening in Africa, Southeast Asia and the Caribbean. Try to picture an international AIDS quilt — how big would it have to be? Think again about the single panel that touched you the most, and multiply the tragedy by millions.

Most quilt makers choose to emphasize the positive when creating a panel — to capture a sense of vibrancy and aliveness about the dead person’s life. This results in a Quilt which, despite the underlying sense of loss, is almost cheerful on the surface. Real understanding requires looking beyond the warm fuzzy images to how ugly this disease really is. Every one of those panels represents a death, usually a messy, unpleasant death full of vomit, feces and drool, dementia, incontinence, and wasting, and a great deal of physical and emotional pain. As survivors, we want to preserve the warm memories of the ones we love. But truly understanding AIDS means bearing witness to an unromantic, unsanitized reality that cannot be conveyed through a quilt.

When looking at the individual panels, notice who is represented. Sure, AIDS affects all parts of our society, but the overwhelming majority of those memorialized in the Quilt are gay men or drug users, in both cases disproportionately African-American or Latino. Our society has long divided people with AIDS into innocent victims and guilty ones — does your reaction change upon realizing that most of the panels are for those unequivocally in the “guilty” category?

Pay attention to all of the pink triangles, rainbow flags, and other gay symbols on the Quilt panels — a whole community is being devastated, and the Quilt documents that destruction. A huge number of Quilt panels were made by gay men for their deceased partners: How many people think about what it means to be the surviving partner in a relationship rarely acknowledged or recognized as valid? How many of the school kids seeing the Quilt understand the relationship of the names on the panels to the physical and verbal queer-bashing that goes on in their schools? Does seeing a memorial panel make you actually care about the real life of a junkie on the streets? When you look at the Quilt, do you understand how racism, homophobia and sexism contributed to this epidemic? Does it make you want to actually do something about it?

To understand the loneliness of AIDS, look at the Quilt panels which have been made with only a first name, or even “anonymously.” Understand what those represent: families so ashamed of their deceased son or daughter that, even in death, they won’t allow the disease to be associated with the family name. Ask yourself what life with AIDS must have been like for someone in that position.

When you walk through the Quilt, force yourself to ask why we have allowed this to happen to our country. How many of the names on the panels would not be there if we had been willing to put the necessary resources into prevention in the first place? Into talking honestly about sex and drugs? If we fail to make these connections, the Quilt has no meaning.

We have created a wide array of tokens in response to the AIDS epidemic: red ribbons, bumper stickers, Christmas tree ornaments and a host of other epidemic by-products. Participating in these gestures may give voice to our deep pain and loss, and help draw attention to the issue. But in isolation they are little more than gestures, often mistaken for actually doing something effective about AIDS.

At its best the Quilt can propel those who view it into meaningful individual and collective action. Mother Jones, an American union organizer, is credited with the phrase “Pray for the dead and fight like hell for the living.” If you are touched by the quilt, don’t just leave it feeling more connected to AIDS. Do something: give money, volunteer your time with an organization providing prevention services, challenge AIDS misinformation and bigotry when you hear it or volunteer as a “buddy” to help someone in declining health. That commitment to effective action is, in the end, the most fitting and eloquent memorial to the dead. 

This article appears in November 29 • 1995.