The AIDS memorial Quilt began in 1987 in San Francisco by AIDS activist Cleve Jones who wanted to honour his friend, Marvin Feldman who had died of AIDS. Jones is an American AIDS and LGBT rights activist, whose career began in San Francisco during the 1970s when, as a newcomer to the city, he was befriended by pioneer gay-rights leader Harvey Milk.
In an interview, Cleve Jones described the inspiration for the quilt:
“When I was born in 1954, there was this quilt, and it’s actually part of my earliest memories of childhood. Whenever I was home with a cold, my grandma and my mother would make a bed for me on the living room sofa so I could watch television, and they would tuck me in with this quilt. My father…explained to me that this quilt had been made for me by my great-grandmother, of whom I had only the vaguest memories. I still have that quilt and still love it…”
He described going to a demonstration, where protestors taped names of those who had died of AIDS to the stone façade of the Federal Building, which houses government departments:
“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. And immediately I thought of my grandmother and my great-grandmother back in Bee Ridge. I thought, what a perfect symbol; what a warm, comforting, middle-class, middle-American, traditional-family-values symbol to attach to this disease that’s killing homosexuals and IV drug users and Haitian immigrants, and maybe, just maybe, we could apply those traditional family values to my family.”
But of course, the quilt was also a response to the global AIDS pandemic. Thousands of people were dying in those early decades. In many parts of the world AIDS was characterised as a ‘gay plague’ and those who contracted the virus became ill and died were subject to vilification, hatred and blame, including after they had passed away. Many people who died of this virus were denied funerals, as funeral directors refused to handle the bodies of those who had passed away from AIDS. Inclusion in the AIDS memorial quilt was often the only way the person could be memorialised. Sometimes the stigma made even this impossible. The UK AIDS memorial quilt includes some ‘anonymous’ quilt panels where the family refused to let the name of the person be revealed.
The stigma around HIV created a climate of shame and fear that silenced people affected by HIV across the world. There was a need to mobilise and fight for the research and medical response that was needed. In this context, the making of quilts to memorialise the lives lost was not just an act of commemoration, it was a cry of protest at the needless loss of life and the health inequalities that meant the most marginalised communities experienced the greatest losses. The AIDS Memorial Quilt is an object of protest and activism every bit as much as it is a symbol of love and remembrance.
Alistair Hulme, a former board member of advocacy organisation Scottish AIDS Monitor, set up The Names Project UK in the late 1980’s after a visit to San Francisco and in response to how HIV/AIDs was being handled in Britain, too. The Conservative government of the 1980s was particularly slow to respond to the emerging HIV pandemic. When the government finally did respond, it did so with the infamous ‘tombstone’ TV advert. Here, the language used was full of fear and added to the stigma surrounding HIV.
Across the media, homophobia was present and fear was stoked, through headlines such as ‘Britain threatened by gay virus plague.’ Yet it wasn’t just the tabloids, the Chief Constable of Manchester, James Anderton stated that ‘Gays are swirling around in a cesspit of their own making.’
The UK quilts are made of many different fabrics from simple cotton to faux fur and leather. And of course, glitter and sequins. Many were made during workshop sessions at the London Lighthouse, a centre and hospice for people with HIV in west London from 1986 – 2015. The UK collection is made up of forty-eight 4m x 4m quilts, each quilt contains eight individual panels. Panels were made throughout the UK and sent to the Names Project UK, based in Edinburgh to be sewn together, approximately 400 names are memorialised. This includes many famous people including activist Mark Ashton, who helped to found Lesbians and Gays Support the Miners, the artist Keith Haring, photographer Robert Mapplethorpe and actors Ian Charleson and Denholm Elliot.
My name could have been on one of those quilt panels. On 27th January 1991, I received a positive diagnosis for HIV. I was 34 years old. At that time there was no effective treatment and I didn’t expect to see my 40th birthday. Here I am almost 31 years later, living well with HIV.
A personal favourite panel of mine is a simple green cotton panel dedicated to Michael. His surname is covered as his parents didn’t want his full name to appear, such was the stigma attached to HIV/AIDS. His friends embroidered ‘Michael the Class Act’, ‘Michael The Kind’, ‘Michael The Smile’ and ‘Michael The Missed’, which to me says much more about him than his surname.
Each one is a personal reflection of a loved one lost. Stories behind the quilts are both inspirational and heart breaking, a mother’s tribute to a loving son, a lost group of friends and many individual relationships. Along with the quilt panels, loved ones often sent their quilt panels in accompanied by letters. These letters tells us a little more about the person they had lost, their relationship and even make requests of the custodians of the quilts.
One particular letter includes a request to lay a single red rose on the quilt on the 8th July, the anniversary of the person’s death. It was an honour to be able to lay a single red rose on the panel during the display that took place in July, earlier this year.
It’s very rare for the all the quilts to be on public display at the same time, due to the size of space needed. In June 1994 the UK quilts were displayed in Hyde Park, London, along with a selection of quilts from the United States as part of the Quilts of Love exhibition in 1994.
In July 2021 the quilts were on display in Acorn House, an office building in Kings Cross, London, where a number of HIV charities had their office. This display, over 2 weekends in July attracted over 800 people. To be able to display all the quilts in one venue was such a moving experience. Opening and closing the building I was struck by the dates on the quilts. Many of those remembered were my peers, many died in 1993, the year I had PCP pneumonia. Thankfully I made it through until the first anti-retroviral medication became available in 1996.
Many of those who made panels and saw them for the first time in decades. Some of the letters that accompanied the panels were recorded and visitors had the opportunity to listen to them.
Listen to a letter written by AJ about the panel of his lover, Andrew (above):
Listen to a letter written by Almer Green about the panel of her son, Michael Buckland:
The Names Project UK closed in the mid 1990’s and the quilts were stored in Edinburgh until George House Trust in Manchester acquired them in 2004. The UK AIDS Memorial Quilt Conservation Partnership was set up in 2014 and are the current custodians of the quilts. The aim of the Partnership is to find a permanent home where conservation work can be done, and the quilts can be on permanent public display.
Comparisons have been made with HIV and COVID-19 in particular the difference in the speed of response from the government to COVID compared to when HIV first became known. In March 2021, one year after COVID lockdown began, a wall along the South Bank of the Thames opposite the Palace of Westminster and below St Thomas’ hospital was painted with red and pink hearts, each representing someone lost to COVID. This has become known as the National COVID Memorial Wall.
In the UK, there are HIV/AIDS memorials in Brighton and Manchester, yet there is no permanent London memorial to people lost to HIV after 40 years since the first record of infection and numerous campaigns for one.
40 years on from the first HIV related deaths, and despite amazing advances in the prevention, treatment and support of people living with HIV, stigma still exists. The AIDS Memorial Quilt continues as a living piece of community art through which stigma and attitudes to HIV can be challenged. Every time it is displayed in a public place it tells the stories of real lives lost. It draws the memory of a person, and all those who have died of AIDS and AIDS related illnesses, out of the shadow of stigma into the light of celebration.