Thirty Years: An AIDS Anniversary

Thirty years ago today, on June 5, 1981, the Centers for Disease Control and Prevention (CDC) reported the first cases of AIDS in the United States.

My friend Wormwood's Doxy, an HIV/AIDS education professional, has written a moving anniversary essay at her blog. Read it here.

Once you have recovered from reading it --it may take you a few hours; it is an intense and beautiful essay-- come back here and read my offering for this day, written 23 years ago, in 1988, when I was in my thirties.

This commentary, minus the three paragraphs in red brackets, was published and distributed by Religious News Service (now called Religion News Service) on July 12, 1988 under the title "The Names Project Quilt Makes Beauty Out of Horror."

At the time I wrote the essay, I was working on my first book, Generous Lives: American Catholic Women Today (William Morrow, 1992; pbk Triumph/Liguori 1993), and was employed as a program developer raising funds for The Hospice at Mission Hill, the first residential hospice for people with AIDS in Boston.

The AIDS Quilt was on its first major tour around the U.S. and was displayed in its entirety on the National Mall in Washington, DC in fall of that year. I went to see it at what was still called the Boston Armory.

I have altered only a few tiny grammar and style details and have left in the language I used back then, only seven years after the anniversary we commemorate today. (For instance, I never use "minority groups" or "minorities" to mean people of color or minoritized groups these days, but I did then. The Soviet Union was still the Soviet Union in 1988, so I left that in. What is now the U.S. Postal Service had another name.)

The pandemic is still with us, all over the world. This essay is a slice of life.

Many of the students I teach were not even born when I wrote these words.

The Quilt

Cambridge, Massachusetts
June 23, 1988

In Stockholm last week, medical researchers from around the world tracked the elusive virus and its deadly mysteries. In Boston a massive quilt unfolded for four days, stitched by thousands of Americans as a memorial to people who have died of ADS. The quilt, sponsored by the Names Project, is as different from other memorials to the dead as AIDS is different from the other diseases that have plagued us. It is not made of stone and anchored in the ground, but portable and soft, organic, making its way around the nation, still growing.

More than a week after my visit to the Quilt, its impact will not go away. The first emotional shock, for visitors, is the sheer magnitude and diversity of the project, row upon row of remembered lives, presented in sophisticated patterns and hesitant stitches, in all materials from denim to organza. Some panels show only a name and dates of birth and death. Others literally bear pieces of people's lives: articles of clothing, photographs, locks of hair. One has the ashes of the person it commemorates sewn into a corner.

The Names Project is meant, according to its founder, San Francisco gay activist Cleve Jones, to give "a glimpse of the lives behind the statistics" as it travels around the country. Men, women and children sewed for relatives and lovers and for people they had never met. There are crosses and stars of David, hearts and teddy bears and pictures of cats, insignia representing the military and the medical professions, pennants from Yale and Columbia. On one panel is the portrait of a proud, handsome Black man, with a written tribute to his character and commitments. Another, with a child's pink dress sewn onto it, says only "La Hijita de Dios," "the little daughter of God." All over the panel, serving as background design, are small diaper pins.

And then there is the second shock: youth. Over half the panels bear dates of birth and death. I stared and subtracted: twenty-five years old; thirty-nine; twenty-two; two years old. The overwhelming majority of those who have died, who are now ill, who are HIV-positive, are young. Mothers embroider love letters to lost sons on the cloth. Nothing prepares one for this, even the experience (which I share) of having young loved ones among the dead. It is like walking in an old New England cemetery and coming across a child's stone marker among the graves.

We speak a lot these days about the spread of AIDS among intravenous drug users, among heterosexuals, into minority communities, through mothers to their babies. The Quilt is beginning to show the impact of these facts. But still the names are mostly those of men --young men, gay men. I am reminded of the population charts in the Soviet Union, on which the curve dips at the males who were young adults during World War II. We have not even begun to measure the trauma and devastation which AIDS has brought to an entire generation of an entire community. "I am angry," says a friend, "that at the age of 29 I must deal constantly with multiple deaths, with friends losing their strength and the use of their bodies, with grief and hospitals and burials and loss. " "Many of us are finding it hard to plan for the future," says another: "Is there a future for me? Will my closest friends till be here in five years? Will I?"

I think of the shock after the death of a single loved one, how it leaves one numb and split open all at once, with the feeling of being both wrapped in cotton wool and bled raw. Multiply this by six and twelve and fifty in the life of one person; multiply that by hundreds. Only after doing this can one measure the emotional impact of AIDS, the massive grief of whole communities, spreading around the nation.

"Wrenching" and "healing" --in the same sentence-- are the words I have heard and used most often to describe the Names Project. This witness to multiple deaths is also about the fullness of life. Most of the panels remember people not as they were in their last days, weighting eighty pounds and unable to bathe themselves or walk to the toilet, but as they were in life, designing theatre sets and playing ball, lovers of glitz and glitter or of hikes in the mountains, speaking and singing in Spanish and English, eating and drinking. A panel dedicated to a mail carrier features the arm of his blue uniform with the "U.S. Mail" emblem, cradling a small teddy bear. The rest of the panel is an uproarious burst of color: a golden peacock, a sunflower, cloth letters of a name in rainbow colors, pictures of California life.

Still, for some of the survivors, the colors battle against bleak memories. "I can no longer remember him healthy and live," says a woman I know of the friend for whom she made a panel. "I always remember him the other way."

All the panels tug at the heart. But for each visitor there were a few that hit the core and that linger, triggering floods of anger, grief, or tenderness. For me one of these was the pink "Hijita de Dios." Another featured two men's shirts sewn on with their arms entwined. "Though lovers shall be lost love shall not," Dylan Thomas wrote in "And Death Shall Have No Dominion." The first verse of this poem is printed on the third Quilt panel that lives on inside me. Long before AIDS, before the wasted bodies and lost minds, before the dementia, Thomas wrote:

"Though they go mad they shall be sane
Though they sink through the sea they shall rise again."

"Death shall have no dominion." I cannot shake this phrase from my mind, trying to summon the stubbornness of life against the slow creep of death.

[The Vietnam Memorial changed forever our experience of monuments to the dead. Like the Vietnam Memorial, the Quilt is a live place, no lonely obelisk in the town square but a place of meeting and community. The Vietnam monument grows bits of life; the first day I went, on a wet December morning, a small flag with a spring of heather tied to it was propped up against the wall almost lost in the mud and brown oak leaves. The rain cause the black wall to shine and reflect my face back to me. There were names on my reflection, some of them familiar last names. The people I knew who bore these names were still alive; but I began to wonder. Was this a relative of the person I knew? Could it have been my friend, given a different lottery number, another set of circumstances? The boundaries crumbled. There was no barrier left between "them" and "us."

The Names Project takes this kind of memorial experience further, deeper. At the Vietnam Memorial, people talk, embrace, weep, ask questions. The dark stone brings forth stories because of the power of the names. The Quilt itself tells the stories, spells out the memories in material that almost seems made of flesh. It is also an organic reality: a whole piece of art, but an unfinished one. The epidemic has not stopped growing. Neither, until it does, will this quilt.

It is impossible to stay passive before the Quilt, even more so than before the Vietnam Memorial. This is because it tells stories directly and because live stories lead us to act and to hope, like the retelling of the Passover or the account of Harriet Tubman and the Underground Railroad. Memories like these do not mire us in the past; they move us to shape the future. But first we go down, into the grief, into the struggle, through the retelling. Without memory, there is no possibility of hope, nor of bringing about the changes that will stem the tide of death.]

As I walked into the exhibit, the first people I saw were a very pregnant woman, a man, and a child. The mother bent over and spoke to her child about a man who had "died of the bad disease." She asked the child, pointing to a panel with a basketball shirt attached and an embroidered basketball, "What do you think this person really liked?" Five years from now, will I be the woman explaining to her child about the bad disease? Fifteen years from now, will this disease still claim lives? Will the Quilt sit in a museum? How many more stories will we need to tell? "No more names!" read a tee-shirt worn by one of the visitors.

The Quilt is a wondrous work of art --colorful, homespun, soft and resilient, quintessentially American, spiritual and political, beautiful in itself and charged with moral energy. It chronicles a catastrophe, like Picasso' s "Guernica," but is crafted by a community rather than a lone genius. Like "Guernica," it makes beauty out of horror. It leaves the viewer torn: grateful for such beauty, for the redeeming power of names and memory, for the healing; and wishing that this thing of beauty had never had to exist, knowing the names will not go away.

* * * * * * * *

This was, of course, long before the internet. The Quilt is now online here. Nothing, however, replaces having seen it, walked around the panels, bumped into a colleague who wept in my arms, and heard the names of the dead read aloud, as has happened at all public showings of this work of art.