by Cleve Jones
It took weeks to heal the deep wound and I awoke often through the nights, soaked with sweat and shaking from the nightmares.
Keith Rice borrowed a car and came to see me. We drove to the Russian River and stayed at the Willows resort, where Keith pitched a large tent that he decorated with flowers and filled with pillows. He made a comfortable bed for me and kept the cooler filled with ice and healthy snacks. At night we cuddled gently and he soothed away the bad dreams with soft kisses. I noticed he had lost weight and that his face looked drawn.
I spent most of the summer hanging out with Ron and Val and Justin. Fall came and the air cooled and the trees in Capitol Park turned gold. Weekends I spent in San Francisco with Keith. He was talking about going back to the East Coast to see his family.
One afternoon the phone rang. “Cleve, dear, this is Esther Feldman, Marvin’s mother.” I’d met Marvin’s parents, Sid and Esther, a few summers before on our way to Provincetown. I’d been to New York to see Marvin a couple times and we spoke often on the telephone. My heart sank, knowing this wasn’t a good news call. “Marvin is asking for you.”
Eventually we all make this journey. We pack our bags in the car or get on a plane or train or bus. Maybe it’s just a short drive, maybe a flight across the country, but eventually we all have to say goodbye to someone we love so much and will never see again.
In this case it was a flight from San Francisco to Boston and a bus ride to Marvin’s childhood home in Providence, Rhode Island. I was frightened. I didn’t want to see what the virus had done to Marvin’s beautiful body and face. So many of our friends had been blinded by retinitis before dying. Would Marvin’s blue-grey eyes still be able to look back into mine? Others had gone mad from dementia; would Marvin recognize and remember me? And what would I say to his parents, whom I barely knew? Would the rabbi be there? Would my presence make them uncomfortable?
All my anxiety melted away when I walked into Esther Feldman’s kitchen and smelled the food she was preparing and felt the love of Marvin’s family envelop me. Marvin was back in his old room and when he opened his eyes he smiled and I could tell that he could see me and recognize me. His voice was very weak but I climbed gingerly into his bed and lay next to him with my ear close enough to hear his words and feel his breath.
His door opened to the living room, where Sid and Esther held hands on the sofa as Marvin’s nieces and nephews arrived with his sister and brother. We sat there quietly waiting and listening to the sound of his labored breathing.
I had to go back to work. Marvin was no longer conscious. I took the bus back to Boston and the Pan Am flight home. He died the next day.
My heart was filled with hatred, fear, and despair. I hated the politicians who had refused funding for research and care. I hated the preachers who gleefully celebrated our misery. I feared for my friends who were dying all around me as I feared the inevitable destruction of my own body. In my despair I lost all hope that treatments and a cure would be found in time to save me, or the millions more who were already infected around the world. I suspected the next year would be my last.
CHAPTER 26
A Stupid Idea
I COULD SEE IT SO CLEARLY IN MY HEAD AND IT WAS STARTING TO MAKE me crazy. All I had were words, and apparently the words I had were insufficient to paint for others the image in my brain: the National Mall, covered in fabric stretching from the Capitol to the Washington Monument. But whenever I began to talk about it, I was met with blank stares or rolling eyes.
Even the word had power for me. Quilts. It made me think of my grandmothers and great-grandmothers. It evoked images of pioneer women making camp by the Conestoga wagons. Or African slaves in the South, hoarding scraps of fabric from the master’s house. It spoke of cast-offs, discarded remnants, different colors and textures, sewn together to create something beautiful and useful and warm. Comforters.
I imagined families sharing stories of their loved ones as they cut and sewed the fabric. It could be therapy, I hoped, for a community that was increasingly paralyzed by grief and rage and powerlessness. It could be a tool for the media, to reveal the humanity behind the statistics. And a weapon to deploy against the government; to shame them with stark visual evidence of their utter failure to respond to the suffering and death that spread and increased with every passing day.
As I continued to work for the Friends Committee on Legislation, I couldn’t shake the idea of a quilt. I traveled frequently throughout California to visit the local Quaker meetings that supported the FCL’s work on criminal justice issues. One Sunday at the Palo Alto Friends Meeting I met a young man named Atticus who had just graduated from Stanford University. I could tell he hadn’t been to a Quaker meeting before; he was wearing a jacket and tie while the Friends were more casual. He had a cold and I could tell he was embarrassed by the sound of his sniffles in the otherwise silent meetinghouse. I thought he was adorable.
We started to date. I decided that it was not fair to the Quakers for me to work with them while I became more and more distracted by the idea of the quilt. I’d saved some money and Atticus was well paid. We eventually got an apartment on Hancock Street near Dolores Park in San Francisco. It was a beautiful little apartment with spectacular views of downtown from the bay windows. Al and Mila Schneider, the landlords, lived next door. Al was Swiss, his wife came from the Philippines, and they liked us. Mila was especially fond of Atticus and would call out to him in the morning as he left for work, “Good morning, Atty-koos.”
Atticus listened to my ideas for the Quilt and encouraged me. He also noted that I needed an administrative type, someone with managerial skills, to help me. He introduced me to a friend of his from Stanford named Mike Smith. Meanwhile, my friend Joseph and I started making quilt panels. The first was for Marvin; I painted it in the backyard. It wasn’t very good, and I fear Marvin would have disapproved. He would have wanted something suitable for the Museum of Modern Art, or at least for a display window at Barneys on Madison Avenue. Joseph and I made a list of forty men we felt that we had known well enough to memorialize and began painting their names on 3-by-6-foot blocks of fabric. We both remembered that night on Castro Street and talking of how much land would be covered if the bodies of our dead were laid out head to toe. Each panel was the approximate size of a grave.
Mike and I called a meeting in the spring of 1987, rented a room in the Women’s Building for a few hours, and put up posters around the neighborhood. Hardly anyone showed up, but two who did were Jack Caster and Cindy McMullen, who preferred to be called “Gert.” Both had already created panels for their own friends, and they were far more elaborate and artistic than the crude first attempts that Joseph and I had painted in my backyard. Jack would volunteer for us until he died. Gert is still sewing.
For over a year, activists from around the country had been working to organize a mass march for lesbian and gay rights to be held in October 1987 in Washington, DC. I was determined to unfold the Quilt on the Mall at the march.
By June we had several dozen panels created. Some of them were quite plain; others were magnificently artistic. Gilbert Baker made a hot pink panel for Bobbi Campbell. Gert sewed them eight at a time into squares that were 12 by 12 feet, and edged them with canvas with evenly spaced grommets to enable the squares to be linked together or suspended.
As the annual Gay Freedom Day celebration approached, we asked Mayor Feinstein for permission to hang the first five squares from the mayor’s balcony at City Hall, overlooking the main stage and Civic Center Plaza. To our surprise, she readily agreed.
We had a new Member of Congress representing San Francisco and I asked her for help with some trepidation, having campaigned for her opponent in the election, Harry Britt. Nancy Pelosi agreed to help, but she was skeptical. “Cleve, I actually know how to sew and enjoy it, but do you really think people will find the time to do this?”
She, Leo T. McCarthy, and Art Agnos hosted the first fundraiser at her posh home in Pacific Heights. The
Castro Street Fair was organized as a nonprofit and we began to operate under their auspices. We had a name now: the NAMES Project AIDS Memorial Quilt.
Almost immediately we came up against two bureaucracies. The organizers of the national march didn’t like the idea of us draping a couple blocks of the Mall with fabric, and neither did the National Park Service.
Nancy Pelosi met with the Park Service officials. They expressed concern that the fabric would kill the lawn. Pelosi told them we could “fluff” the Quilt every hour to let the grass breathe. It was an utterly ridiculous promise to make but the Park Service bought it and issued the permit.
Ken Jones and San Diego activist Nicole Murray-Ramirez helped persuade the march organizers to not oppose our presence.
On Sunday, June 28, 1987, over two hundred thousand attended the San Francisco Lesbian and Gay Freedom Day Parade and celebration. The day was dedicated to the memory of people who had died from AIDS. Everyone in Civic Center Plaza could see clearly the multicolored Quilt sections hanging from the mayor’s balcony.
I finally had more than words to describe my vision. People could see it now. They lined up at our information booth up to talk with Mike and Gert and Jack and to get copies of our first brochure with instructions for creating memorial Quilt panels. Those brochures would travel back to the hometowns of all the visitors. Across America people began to sew.
We rented the cavernous old building at 2362 Market Street, where Harvey Milk had moved his Castro Camera store after being evicted from Castro Street back in 1978.
In New York, Larry Kramer launched the AIDS Coalition to Unleash Power—ACT UP. Kramer’s play, The Normal Heart, had opened to great acclaim in 1985. ACT UP’s first big action was on Wall Street in March. The demands put forth by ACT UP focused on access to medications, federal inaction, pharmaceutical greed, and drug development processes. Those issues would remain paramount for over a decade.
Predictably, within the activist circles there was great division and disagreement. Some ACT UP members attacked the NAMES Project as too passive. They called the Quilt the “death tarp” and sneered at our volunteers. Kramer said the Quilt should be burned. After a while, it became something of a schtick between us: Larry would call for the Quilt to be burned, I’d say, “OK, Larry. Can we wrap you up in it first, dear?”
I liked what ACT UP was doing—the combination of smart science with direct action and civil disobedience—but I also found them to be just a bit of a clique. The membership was overwhelmingly white and male and under 40. They wore Doc Martens boots, tight T-shirts with bold graphics and black leather jackets. I supported them, but in the back of my mind I kept thinking about my grandmothers and how much they loved me and how there needed to be a place in this movement for them and people like them who cared about their gay kids but weren’t going to don bomber jackets and storm Wall Street or the Food and Drug Administration.
Many in the community disliked ACT UP’s tactics and Kramer’s bombastic rhetoric. Some people avoided all of the political protests and instead focused on creating the social service infrastructure required by the burgeoning numbers of desperately ill patients. There were huge fights about prevention education messaging, the impact of AIDS on women, and how to address the disproportionate infection rates within black and Latino communities.
Some of the brightest and most dedicated activists eventually chose to work with the pharmaceutical companies and federal agencies like the National Institutes for Health and the Food and Drug Administration. Other activists soundly rebuked them, but the efforts of Project Inform and the Treatment Action Group soon delivered important results and ultimately changed the way clinical trials of HIV medications were conducted.
Even the scientists quarreled: the French and Americans fought over who had first identified the HIV virus, American Bob Gallo or Frenchman Luc Montagnier. (It was the French.)
A small but extremely vocal group of activists rejected science and common sense and proclaimed that HIV didn’t cause AIDS. These AIDS-deniers found many receptive to their message, especially among the ranks of those who were searching for any rationale to avoid the need to change our sexual behavior. These sociopaths succeeded in taking over the San Francisco chapter of ACT UP. With cruel irony, they financed their operation by selling marijuana to dying AIDS patients, using the profits to fund a global disinformation campaign. Charlatan manufacturers of vitamins and nutritional supplements who claimed their products cured AIDS also supported and helped fund them.
The AIDS denial message reached far and wide. The popular rock band Foo Fighters would take up the cause; the band’s bass player, Nate Mendel, headlined a benefit for one of the main denialist organizations, run by a woman named Christine Maggiore.
Maggiore was herself HIV-positive but she declined treatment, even after she learned that she was pregnant. After giving birth she refused to allow her daughter, Eliza Jane Scovill, to be tested for HIV. The child died from Pneumocystis pneumonia three years later. Maggiore succumbed from AIDS-related complications in 2008.
Sadly, the denialists also influenced Nelson Mandela’s successor, President Thabo Mbeki, who cited the flawed science to justify withholding HIV medications from South Africans, even as infection rates in that country soared.
On October 11, 1987, the second National March on Washington for Gay and Lesbian Rights drew approximately five hundred thousand people. The first display of the NAMES Project AIDS Memorial Quilt was unfolded at dawn with 1,920 individual panels, just a small fraction of the more than twenty thousand Americans who had already lost their lives to AIDS. It took hundreds of volunteers, who came from all over the country to work with the core group of Mike Smith, Gert, Jack, Debra Resnik, Scott Lago, Leslie Ewinga, Rebecca LePere, and the many others who had walked away from careers and families to create the Quilt. Donald Montwell and Jim Maness flew in from Maui. Jim was near death and could no longer walk. They had worked with Whoopi Goldberg early in her career at the Valencia Rose. Before we opened the Quilt to the crowd, Whoopi, Jim, Donald, Mike Smith, and I pushed Jim in his chair to the center of the Quilt. Around us, tens of thousands waited in silence in the cold morning air. Whoopi was wearing one of her tour coats, and she wrapped it around Jim’s skinny shoulders. As we wheeled him back, Donald began to give the coat back to Whoopi, but Jim clutched at it, grinned up at me, and said, “I’m going to be buried in this.” I believe he was.
Later, Mike Smith and I stood on a cherry picker 20 feet above the ground and watched as hundreds of thousands of people walked the canvas walkway grid that contained the squares of quilt panels. Only the reading of the names and the sound of people weeping broke the silence around us. We were exhausted and overwhelmed by the beauty of the Quilt and the horror it represented. It was my 33rd birthday.
On the flight home a few days later out of National Airport, the jet flew over the Mall. I looked down from my window and saw that the Park Service bureaucrats had been right. Despite Representative Nancy Pelosi’s assurances, the canvas walkways of the Quilt had left behind a haunting afterimage of the grid on the lawn within which the Quilt had been unfolded.
CHAPTER 27
We Bring a Quilt
WHEN WE GOT BACK TO SAN FRANCISCO AND OUR WORKSHOP ON Market Street we learned that images of the Quilt had appeared in newspapers, magazines, and television broadcasts around the world. New panels arrived in the mail every day, along with letters from throughout the US and around the world, many of them asking us to bring the Quilt to their communities.
We bought a truck named Stella and hired the toughest truck driver we could find. She happened to be Debra Resnik, a volunteer who could also sew like mad. She couldn’t stand me, but she loved the Quilt. We set out in early 1988 on our first tour of the US, visiting twenty major cities across the country over four months. Typically, I’d fly in to each city a few days before the Quilt crew arrived to do advance media, thank local volunteers, and meet with the staff and clients of the myriad new AIDS
organizations being created every month. With each stop, people lined up, mostly mothers, to present us with the panels they had sewn for their sons and daughters.
My friend Randy Shilts published “And The Band Played On” that year. ACT UP and NAMES Project chapters proliferated side by side with the new service provider organizations, run mostly by volunteers. ACT UP’s signature slogan, “SILENCE=DEATH,” became ubiquitous at the ever more frequent protests and vigils.
President Reagan personified everything that was wrong about the nation’s response to the pandemic. In July 1987 he created the President’s Commission on AIDS. At first the Commission seemed to be a disaster; many of the commissioners had no background in medicine and many were very conservative, including Cardinal John O’Connor. But the Commission’s report in June of 1988 was remarkably free of conservative ideology and was well received by most AIDS activists, especially the calls for increased research and education.
We decided to take the Quilt back to Washington in October, and thousands of panels were submitted by the August deadline. Gert and her volunteers kept the sewing machines going twenty-four hours a day.
The road crew—Debra Resnik, Jack Caster, Evelyn Martinez, Scott Lago, Joey Van-Es Ballestreros, and Gert—shared with the San Francisco–based volunteers what they had experienced during their travels. While the fury of ACT UP was justified and powerful, we needed more than rage to survive this plague. We needed love. And everywhere the Quilt traveled, we found love.
We’d all heard the terrible stories of dying people abandoned by their families and churches. We’d heard of the cruelty directed against Ryan White in Kokomo, Indiana, and the arson attacks against the Ray brothers in Arcadia, Florida. But as we traveled we met all the parents and grandparents who could never imagine abandoning their kids. We met the volunteer caregivers. We were sheltered and fed by strangers. We met the congregations who welcomed people with AIDS and their families. We saw firsthand the power of community organizing to create needle-exchange programs and other prevention campaigns targeting specific high-risk populations.
