The Hidden Women of the Aids Crisis Are Finally Telling Their Story (2024)

Of the many brilliant things about It’s a Sin – like Colin, La! and hearing Erasure’s ‘Oh L’amour’ on the telly – the most enduring legacy of the Russell T Davies drama may be the way it has inspired a new conversation about Aids and HIV. In the UK, where it first aired, the series has even driven a welcome rise in testing for the virus, according to the Terrence Higgins Trust.

It’s also offered the chance to reconsider the reality of the Aids crisis. It’s a Sin is the first major British dramatisation of the pandemic, and its creator drew on his and others’ real-life experiences growing up in the shadow of Aids in the Eighties. Davies’s story centres on four young, gay men and their straight mate, Jill, who is drawn from the writer’s real-life friend, Jill Nalder. Her role is singular: it’s been rare enough to see the Aids pandemic on television, but rarer still to hear the story of the women who lived through it. “People have been telling me they haven’t heard this story before", says Nalder, on a Zoom call from Cambridgeshire where she is seeing out the current lockdown. “It is incredible because there are a lot of stories out there.”

Nalder, who also appears in the show as the mother to her younger self, played by Lydia West, met Davies at youth theatre in Glamorgan, Wales, where they became firm friends. When he went to Oxford to study English Literature, she moved to London for drama school and into a student flat that she and her housemates called the Pink Palace. This became the fictionalised setting for It’s a Sin, with some real-life details, like the £20 a week rent. “The Pink Palace was truly pink,” Nalder says, “with pink carpets, curtains and furniture. It was a strange taste, I suppose.”

The series also closely reflects how Aids entered Nalder’s and Davies’s lives, first as rumour, then as fact. “I had a friend from college, who’d gone to America for the summer holidays and I remember writing a letter, saying I’d heard of this gay flu,” says Nalder. “I wrote: ‘please be careful, because it’s in America’. That's my first memory of it.”

When Aids landed in the UK in the Eighties, Nalder took on many roles. She drove her friends to hospital for blood tests and viral load counts. She became their confidante and got to instinctively know when a friend was going to tell her about their diagnosis. She helped found West End Cares, a charity that staged cabaret nights, raising money for Aids research and, in one instance, buy an oven for an Aids ward.

She was also a keeper of secrets, often from families. “I had to call a friend’s family from a phone box and say I think you need to come to London because he’s very sick,” she says. “I didn't say it was Aids, because he didn't want me to. That was terrifying, to have to phone someone’s parents. It was quite horrible.” The real horror followed, when Nalder lost three of her closest friends to the disease. Their stories have never gone away, she says, just as the Aids crisis is not over for many in other parts of the world. “You still remember people. When I look back on it now, it was not an easy time.”

Ruth co*ker Burks has never forgotten the gay men she cared for either. “They have been alive and with me every day since,” she says, on a WhatsApp call from home in Bentonville, Arkansas. Hers is another unforgettable story about what it was like to be a woman in the Aids crisis, finally told in a remarkable new memoir, All the Young Men.

It was spring, 1986, in Little Rock, Arkansas, when co*ker Burks, visiting a friend with throat cancer in hospital, saw three nurses drawing straws, then refusing to go inside a room that was covered up by a blood red tarp. They warned her not to, either, because of “the gay disease”. co*ker Burks, then a 26-year-old single mother who worked in real estate, didn't know anything about Aids, only that it made her afraid. But that wasn't enough to stop her going in and meeting Jimmy, a young man who, weighing about 85 pounds, was dying, and calling for his mother. “When they wouldn't go into his room, I just couldn't imagine it,” co*ker Burks says now. “He wanted his mother. I thought no matter what you had done, your mother could come. I didn't know that they didn't.”

co*ker Burks got a number from the nurses and rang Jimmy’s mother, who said her son was dead to her already. co*ker Burks then sat with Jimmy for 13 hours until he passed away, and when no one would take responsibility for his body, she arranged his cremation. Weeks later, she was sent his ashes in the post. A family feud meant that, luckily enough, co*ker Burks’ family had a huge plot in a local cemetery – her mother had bought up all two hundred and sixty-two plots to deny her uncle a final resting place with his loved ones – so she bought a cookie jar in a local pottery store and buried Jimmy’s ashes in her father’s grave.

She didn't tell anyone initially. At the time in Arkansas, consensual sex between two men was punishable by up to a year in prison and she, as a single mother, was already a social pariah. She was concerned about the consequences if people found out. “There wasn't a judge alive in the United States that wouldn't have taken my daughter away from me and given her to her daddy, with no visitation rights,” she says. “That's what I was afraid of.”

But word had gotten out about Ruth co*ker Burks. A nun at the local Catholic hospital called her next. Ronald, an Aids patient, had been dumped at the ER, but as Sister Angela Mayer explained, the hospital was not equipped to deal with him. Besides, they didn't want the reputation. Ronald died before co*ker Burks could help him, but soon she was fielding calls from other men with Aids, seeking her help.

co*ker Burks always gave it, even though she had no medical training, and no help. She nursed patients in hospital when even medical personnel refused to go into their rooms. She took in home cooked meals, made from food she’d scavenged from neighbours and local deer hunters. She fought for benefits and temporary accommodation, and after it was all over, she’d go to court to fight for burial rights. She did it alone. There was opposition from doctors, neighbours, and she lost friends. When they got wind, the Ku Klux Klan burned crosses on her lawn. But she wasn't dissuaded by that. “Oh gosh, those crosses. I mean, what a bunch of cowards, that they couldn't even say anything to a woman,” she says. “But the thought of stopping didn't cross my mind. I loved my guys.”

All the Young Men is a love letter to her guys. Tim and Jim, Paul, Norman, who ran the local gay bar, the drag queens Billy and Misty. The names go on. In the Nineties, care for people with HIV/Aids improved, alleviating the burden on co*ker Burks. By then, she had cared for scores of gay men and buried over 40 in her family plot. She keeps one cookie jar still. Hers is a heroic personal story that’s only belatedly been recognised, with honours in the gay press and several film adaptations in the works. But she didn't get the attention when it mattered. “They didn't listen to anything a woman said back then. I was young and blonde and pretty, and I wasn't married, so no one paid any attention to me. No one’s been ready to hear my story until now.”

That experience – of being forgotten, ignored – is shared by many of the women who lived through the Aids crisis. Women living with HIV/Aids have largely been unrepresented, which is not just giving them their place in history – more than half of people living with HIV globally today are women. Lesbian women were vital allies in the fight against Aids. They donated blood, ran food banks, worked on wards and stood in solidarity with their gay brothers, but they have yet to tell their stories. One person dedicated to hearing these voices – all voices, in fact – is the queer activist, author and playwright, Sarah Schulman, whose life work, alongside a prolific fiction and nonfiction writing career, has been preserving the memory of the most significant political movement of the Aids crisis.

Schulman was a rank-and-file member of the direct-action group ACT UP, which, through eye-catching protests (storming Wall Street; covering senator Jesse Helms’s house in a giant condom) and in-the-detail, wide ranging strategies, forced government and health agencies to change access to experimental drugs that then hastened the advent of life-saving protease inhibitors in 1996. In 2001, Schulman and filmmaker Jim Hubbard began the ACT UP Oral History Project, taping interviews with more than 180 surviving members of the group. Those recordings form the basis for her new book, Let the Record Show, a sprawling, uncompromising account of everyone who made ACT UP happen.

Up to now, accounts of ACT UP – like accounts of the wider Aids crisis – have been told from the white male perspective that dominated the movement. Schulman’s book covers everybody with a stake in the fight (and at over 600 pages, she is not exaggerating). “I include Haitians, homeless people, drug users, prisoners, mothers,” she says, “all the different constituencies that made the larger coalition of which ACT UP was one organisational nexus.” Let the Record Show is also a vital record of women’s role. “ACT UP was predominantly white and male,” she acknowledges, “however there’s a difference between predominantly and exclusively; because with women and people of colour in a movement, they impact it enormously.”

It’s a story about individual women, like chemist Iris Long, who didn't know anyone in the gay community, went to an ACT UP meeting, and started treatment activism that would go on to change the way patients could become involved in their health outcomes. It’s about Phyllis Sharpe, a formerly homeless woman who co-founded Anger into Direct Action, a self-empowerment group for homeless and formerly homeless persons living with Aids and HIV. It’s also about Karin Timour, a woman who conducted a years-long campaign to win insurance eligibility for people with Aids.

Let the Record Show demonstrates how these individuals forged real change and collectively women influenced the movement in untold ways. “Many of these men have had no political experience whatsoever and some of the foundations of ACT UP came from the previous feminist movement,” Schulman says, speaking from her home in New York. “[ACT UP’s commitment to] non-violent civil disobedience similarly came from people who were in the women’s peace movement in the Seventies. Women brought all those skills with them. Women were the theoreticians of the movement.”

ACT UP’s work had profound effects for women living with HIV/Aids. The movement successfully campaigned for a broader definition that included symptoms experienced by women. That change, says Schulman, was ACT UP’s greatest achievement. It meant true numbers of women with Aids were recorded and allowed women into experimental drug trials. “That means that every woman in the world today who is taking medication, got medication that was finally tested on women’s bodies because ACT UP changed that definition.”

No two stories are the same, and over the course of Schulman’s work, from starting out as a reporter in her twenties, she has listened to a lot of those from the Aids crisis. What has she learned about the people, like her, who were willing to get in the fight? “I was trying to figure out what these people had in common and what I finally came to was character illogical, that it really wasn't based on people’s experiences. It was that these were the type of person who could not be a bystander in the face of the cataclysm.”

co*ker Burks is always asked why she stepped into the room with the Aids patient when no one else would. She can only think it was God directing her, she says. And why did she continue, with the threat to her family and the sacrifices she made? “Because there wasn't anyone else doing it,” she simply replies.

Jill Nalder was never the only one on hospital wards. There were partners, gay friends, sisters, lots of other women too, she says. It was a privilege to do what she could at the time. She makes it sound less than it was, even though it took over her life. “I could do three hospital visits in one day or not go home at all, if something was drastically wrong,” she recalls. “Don't forget that someone could be sitting there all day, they’re on their own and they’ve had no other visitors and you’d think, oh I better had.”

We are finally recognising that she, and many other women, did so much.

All the Young Men is out now on Trapeze. Let the Record Show: A Political History of ACT UP New York, 1987 - 1993 is published by Farrar, Straus and Giroux in May