The UK AIDS Memorial Quilt, My Mother, and Acts of Resistance

At the height of the AIDS epidemic in the 1980s, my mother - a young intensive care resident - worked in the AIDS ward of a hospital in the American south; an experience filled with poignant memories, many of which words will never be able to do justice. To clarify, this was years before my time, yet hearing her stories growing up meant I understood much earlier than most in my generation the severity of what happened to so many gay men, young and old, at the end of the 20th century.

However, those who don’t have a Dr. Mom with a first-hand experience of AIDS, need not go without education on the subject. Not least when you have TV shows and films such as Russel T. Davies’ It’s A Sin and Gus Van Sants’ Milk to watch or books like Charlie Porter's Nova Scotia House and Rebecca Makkais’ The Great Believers to read.

As for wanting to become equipped with first hand encounters? Look no further than the UK AIDS Memorial Quilt, which will be housed in the Tate’s Turbine Hall between 12 June and 16 June this year, allowing the public the opportunity to reencounter a small chapter in one of the largest community art projects ever made in history. (The UK version alone contains 42 hand-embroidered, painted, and dyed quilts with 23 individual panels honouring a total of 384 individuals affected by HIV and AIDS). There’s an American version too, which was famously laid on the lawn of the National Mall in Washington D.C. in a 1987 protest against the censorship and needless deaths of the queer community at the height of the AIDS epidemic.

As a stark reminder of how textiles haven’t just been used to keep us warm, the quilt isn’t just an homage to the life of someone lost to AIDS, it also pays tribute to the hundreds of families left behind (millions, worldwide). Started by Scottish Activist, Alistair Hume, after a trip to San Francisco where he viewed the original American edition, it wasn’t long before the UK rendition was laid on the grass in Hyde Park seven years later as part of a protest that later came to be known as the Quilt of Love. Both are examples that stand tall in the long history of textiles being used not just as a form of political protest, but as a manifestation of grief and a path to healing.

For example, since the 1970s, Chilean women have used stitching to sew together stories of their frustration and grief through the making of tapestries, or Arpillera. Colorfully sewn hangings depict the loss of these women's loved ones through the oppressive Pinochet dictatorship of the time. Men and women were lost, taken or killed, due to their anti-dictatorship stance and as a result, those left behind turned to Arpillera making, not only to busy grief-laden minds, but to also spread awareness and join a community with shared experience.

Similarly, and incredibly timely to what is going on in Gaza right now, there’s Tatreez, a traditional embroidery technique of Palestinian heritage. Distinctive for its colorful cross-stitched shapes that illustrate the life of the wearer across the gentle swathes of fabric that make up a Thobe, or traditional dress, Tatreez is used to record history and can be different from village to village, even family to family as young women learn from their elders the techniques taught to them and so on. Since the mass displacement of Palestinian people, or Nakba, in 1948 and the more recent events surrounding 7 October 2023, Tatreez has been used to document the never ending assault on native Palestinians. Not only as an act of resistance, but as a necessity.

Even in Homer's Greek epic The Odyssey, the wife of the lost-at-sea Odysseus Penelope sits weaving at her loom while besieged by vulture-like suitors vying for her hand in marriage. Pulling the strings of time and grief together, she staves off the hungry hand of imminent marriage, concealed under the guise of making a shawl for her father-in-law. Under the shadows of nightfall, Penelope undid the strings of her loom, each morning having to start over, and experience her grief fresh anew.

So, when fashion historian and curator Amy De La Haye turned to author Charlie Porter during SHOWstudio’s Book Club in 2023 and said ‘Historically, stitching has always sort of salved the bereaved’, she meant it. The pair were discussing Porter’s book Bring No Clothes: Bloomsbury and the Philosophy of Fashion, an earnest conversation which led to Porter opening up about how he wrote a lot of the book in grief, where not just writing but the process of making helped him on his journey. It’s for the same reasons that during the height of the AIDs epidemic, those left behind became a closely sewn sect (quite literally), sewing together the gathered swathes of their grief into these quilts to document an all-too familiar story, despite the loss of so many loved ones in the process.

Day after day my mother encountered this same story. Droves of young gay men, sick with AIDS, would return from large coastal cities to the small southern towns they left behind. Unable to care for themselves and without familial support, the AIDS ward became their home under her and her mentor, Dr. Donna Sweet’s, watchful eye. Despite hearing her encounters throughout my youth, it’s only now, I further understand the political complexities that surrounded and continue to surround AIDs to this day.

At the time, AIDS was treated more like a punishment, and less like a disease. Governments across the world acted as if AIDS was a non-issue, a back burner project. Insurance companies would deny you care, jobs would fire you, everyone thought that by getting tested you were signing up to get black listed. There was no easy way to deal with this disease and for the longest time the only way out was through.

As a kid, I was captivated by the idea of my mother being a doctor, like all children, I envisioned my parents as heroes. I was inquisitive, with too much internet access, my first memorable exposure to HIV/AIDS came in the form of the 2005 movie musical Rent featuring the stories of Roger, Mimi, Tom, and Angel and their personal battles with the disease, and themselves, in NYC’s East Village. Obviously, the first place I go with my questions is my mother. Immediately, it’s straight facts, the difference between AIDs and HIV, when it was discovered, how it's treated. Alongside this talk about viruses, cells, and drug cocktails, my mother wove me through the warps and wefts of her experience. She was a female doctor in a male dominated field, who studied under another woman in the 1980s. Her work saw her placed on a ward that, due to misconceptions, meant fearmongering and a severe lack of knowledge on the disease struck fear into the majority of those under the Hippocratic oath.

In a recent conversation on this subject, she told me that she's unable to truly verbalise her experience. She was only able to describe to me feelings and short glimpses of memory. Such as her prevailing sense of duty, the panic and the fear, endless questions both medical and moral, and above all, her privilege to be there for them, when few people were. It’s often said that bad memories stay for decades, but terror wipes the mind clean, leaving nothing but a blank, foggy canvas in its wake.

Whether embroidered, painted, printed, or dyed, this stretch of fabric speaks for the preserved history of struggle, and in the face of it, strength. Similarly, this quilt stands, or rather lies, as a reminder that these people’s lives, my mother and Dr. Sweets duty, and this seemingly constant battle is remembered and above all protected. Seven UK HIV support charities came together in 2014 to form the UK AIDS Memorial Quilt Partnership, whose main objective is to conserve and display the quilt. In a period of strife, conflict, and queer erasure such as today which comes in the form of Trump's passport changes, anti-LGBTQ+ policies and the UK Supreme Court redefinition of ‘woman’ in the 2010 Equality Act, such a partnership is unquestionably paramount.

Fate and time are often described as strings woven together. If they are really threads, then this Quilt, the Chilean Arpilleras, Palestine’s Tatreez, and even Penelope’s never ending loom are the woven stories of grief and resilience, strings, stitches, dyes, and fabrics placed together to create the stories of histories we refuse to forget.