Aids and HIVBritain’s best-known HIV charity was launched 40 years ago, but little is known about the man who inspired it. The trust’s co-founders, a former partner and a close friend, reflect on his extraordinary life and legacy
When Rupert Whitaker met Terry Higgins, he was 18 years old, callow and just starting out in life. Higgins was 37, streetwise and, although neither knew it at the time, approaching the end of his. They spent a blissful year together in which Whitaker learned so much. “He taught me that there was love and affection and safety and great sex and fun – that it all existed,” he says. “I was 19 and one month when Terry died.”
Today, Higgins continues to influence his life. Whitaker, a psychiatrist and immunologist, has dedicated himself to helping people who are HIV positive in the name of Higgins. He is one of two founders of the Terrence Higgins Trust (THT), which celebrates its 40th anniversary this year. Not only has this kept his partner’s name alive, but it has also raised awareness of the virus, supported those who have it and, perhaps most importantly of all, helped destigmatise HIV.
The name Terrence Higgins is recognised throughout the UK today, but little is known about the man. That was how Whitaker wanted it at the time, he says, but he has agreed to talk openly about him today. Higgins was the first named person in the UK to die of an Aids-related illness, on 4 July 1982. By naming it after a person, the founders of THT hoped to humanise the deadly epidemic. But stigma was not the only reason it didn’t have Aids or HIV in its title; the terms hadn’t been invented at the time Higgins died. When Whitaker joined forces with Higgins’ great friend Martyn Butler to support people, it was a condition that had no name.
Despite this, the organisation met with considerable hostility in its early days; there was rampant homophobia in Britain, fuelled by a tabloid press that revelled in headlines about a “gay plague”. Politicians, the NHS and newspapers were initially suspicious of THT, because of their lack of expertise in health, fundraising or science. It was initially called the Terry Higgins Trust – because none of his friends had known him as Terrence – and the establishment was even snobbish about the name. What kind of man was called Terry? “We changed to the more formal Terrence Higgins. Terry was thought to be too ‘street’,” Whitaker says. “We struggled to get it incorporated as a charity in the first place because the attitude was: ‘You’re not us, so why should we allow you to do this?” Who were ‘us’? “Straight, white, upper-middle-class males.”
Whitaker has formidable whiskers, speaks with a stentorian self-assurance and cuts an imposing figure. “I’m not easily pushed around,” he says. But, as a child, he was. He came from a deeply dysfunctional upper-middle-class family (his paternal great-great-grandfather founded J Whitaker and Sons, the publisher of Whitaker’s Almanac). His mother, a dirt-poor, part-Māori girl from New Zealand, was a dancer and a beauty. But his father was violent, putting her in hospital a number of times. Broken by abuse, she became an alcoholic, addicted to prescription drugs. His parents divorced when he was seven; he says he wished they would have done so much earlier. “I was clinically depressed when I was six,” he says. “I asked my mum how Māoris killed themselves,” he says – and followed that by trying to kill himself.
When he was 13, his mother fell asleep while smoking in bed, was severely burned and died from complications. Whitaker’s father sent him from London to a remote boarding school that offered help for children from broken families. He was a bright boy and a talented musician. But, at the age of 15, he became the first boy to come out at school – and he paid a price. The young Whitaker was both bolshie and a bag of nerves. He was all set for a singing scholarship at Cambridge University, so long as he passed the entrance exam. But his low self-esteem meant he couldn’t go through with it. “I was too afraid to sit them, so I turned it down.” Why? “I didn’t think I was bright enough.”
Instead of going to Cambridge, Whitaker went to Germany for a year and worked as a clerk at a publishing house. It was here that he embarked on his first relationship, after being seduced by a boss twice his age. He believes it was in Germany that he was infected with HIV.
By the summer of 1981, however, he was back in London, where he met Higgins in the West End nightclub Bang. It was a life-transforming moment. They couldn’t have been more different. Higgins was a working-class man who had grown up in south Wales and left for London to live the life he wanted. He was easy in his skin and naturally flamboyant. Whitaker’s confidence was all front. “I was afraid of my own shadow. It was like everyone else had the rulebook to life and understood what was going on, and I had no idea.”
Higgins, however, had no hang-ups. He was out and proud, while the young Whitaker was out and cowed. Higgins adored gay culture, American culture, books, movies, music, clothes, clubbing. He was determined to live life for himself. It could so easily have expressed itself in solipsism, but Whitaker says it was the opposite. There was nothing more Higgins wanted than to create a sense of family among friends – perhaps to compensate for the fact that so many had become estranged from their birth families.
He was so innately anti-establishment that he wasn’t even aware of it. “He would wait for me on the other side of the street from my father’s flat,” says Whitaker. “And he’d show up in this outrageous pink, sleeveless sweater – he didn’t give a damn. Those were not the days when you could do that with impunity. People would notice; why is that man wearing pink?” Did that bother him? “Terry didn’t give a shit. He wasn’t bothered enough even to remark about it.”
Terry gave me the sense that it was OK to stand your ground. He made me grow up, and held my hand as I did itMartyn ButlerWhat did Whitaker find attractive about Higgins? “I was smitten by the macho-man look. I loved moustaches. Nobody had a beard then. Short hair and tight jeans, plaid shirts and construction boots.” Did Whitaker have a moustache? “God no, I couldn’t grow anything till I was in my late 20s. I was a very smooth-cheeked young man, but fortunately I had a good jawline.”
Soon after they started dating, Whitaker left for Durham University to study psychology, anthropology and philosophy. But he would return to London most weekends to spend time with Higgins. Higgins was so patient with him, he says. In what way? “He was patient with my shyness. I was never enthusiastic about anything, because I didn’t know what it would entail. He’d be like: ‘Let’s go out to a club,’ and I’d be like: ‘OK.’ It would never be: ‘Yeah, that would be lovely,’ because if I’d said that and the other shoe drops then it’s like I’m an idiot. There was a constant vigilance about waiting for the shit to hit the fan. He gave me a lot of space to be an awkward teenager without any confidence, and that was really kind.”
Did Higgins seem much more mature than you? “Oh God yes. He had an enormous amount of confidence. But it wasn’t this swagger or braggadocio. It was simply that he had faith in himself and he didn’t have much respect for the things that one was supposed to be respectful of. He would respect things that earned his respect. It was a very similar attitude to me now. He taught me a hell of a lot.”
As a young man, Higgins had joined the navy. I ask Whitaker what he did. “He caused trouble.” He laughs. When he decided he wanted out, he and another sailor told the commanding officer that they were gay and had to be fired, because back then gay people were banned from the armed forces. “The commanding officer said: ‘Tough! If I let go of all the poofs in the navy, we wouldn’t have a navy.’” So they made him stay? “Yes. It was: ‘Don’t ask, don’t tell. We’re not interested and we’ll ignore you or punish you if you make a point out of it.’” So what did Higgins do? Whitaker grins. “He and a friend went over the side of the ship with a tin of paint and painted hammers and sickles and got kicked out.”
Whitaker bursts out laughing. He has a huge, life-affirming laugh. “It reflected his character very much.” Was Higgins a lefty or anarchic? “More bloody-minded. Like: ‘Take me seriously, and if you don’t you’re in for it.’”
After the navy, Higgins worked for Hansard, typing up parliamentary reports. “At Hansard, he was also a trouble-maker – a constructive trouble-maker.” Whitaker tells me he recently discovered that Higgins started a trade union there. “They didn’t welcome it, not least because, according to an old colleague of his, there was a culture of bullying in the offices. Terry waded in to put a stop to that, which he did with proper Welsh welly.”
Higgins had been a chunky man, known to his friends as Fat Terry. By the time Whitaker met him, he was losing weight because of his illness. His friends just thought he was shedding puppy fat and looked better for it. Higgins was pleased with it, too; he had no sense he was ill. Then he suddenly became extremely sick. Whitaker was away that weekend in France, singing in a concert. By the time he got back, Higgins had been hospitalised after collapsing at the gay nightclub Heaven. “He was unconscious in isolation. I had read something about this gay cancer that had been identified in Los Angeles. I said to Terry’s consultant: ‘I wonder if it’s this American disease,’ because he had no idea what was going on. He didn’t even respond. He barely looked at me.”
Higgins seemed to recover and came out of hospital. Whitaker shows me one of the few existing photos of him. He is painfully thin. “He was out having a picnic with friends, which is when this photo was taken. Even though he had lost so much weight, we had no idea how severe his illness was.” Less than a month after he was first hospitalised, Higgins died.
Whitaker was devastated on two fronts. He had lost his best friend and the love of his life. But he also knew that, whatever Higgins had died of, he also had it. He had first experienced an unexplained fever in Germany the previous year. Things improved. But the symptoms became more severe after Higgins’ death – the fever was now accompanied by constant exhaustion and headaches. Whitaker was convinced it was just a matter of time. “I was thinking: you’ve got maybe a year if you’re lucky. It was like my life was cauterised. Then the question was: OK, what do I do in the time that I have?”
His priority was to create something by which to remember Higgins and help people in his – or their – situation. Butler organised the first meeting, in his flat. Like Higgins, Butler, who also grew up in south Wales, came to the Big Smoke in search of thrills. He had worked as a projectionist in Cardiff and got himself a job in the West End. Then, in 1978, he met Higgins and they became fast friends.
Butler is at home in Newport when we chat. He tells me it was such an exciting time – and a dangerous one. His life was by turns glamorous and squalid, he says. “I mixed with stars and rubbed shoulders with royalty. But, at the same time, I was sexually abused, street homeless, badly treated by employers – homophobia was rife. When you’re hanging around Soho every day, you meet some characters that you wouldn’t wish on your worst enemy.”
Did Higgins have that kind of life, too? “Absolutely not,” he says. “He was the most self-assured man I ever met.” Butler, who is 67, was 10 years younger than Higgins. Like Whitaker, he was a diffident young man whom Higgins protected. He quickly became part of the family Higgins created. “For once, I had somebody who didn’t want anything from me. Terry didn’t want sex, he didn’t want my money, he didn’t want anything. And here he was, helping me out, showing me the ropes, standing up for me. He gave me a wonderful piece of advice that changed my life. I was ever so grateful to him, because he taught me how to tell people to fuck off. He gave me the sense that it was OK to stand your ground, to not be a wimp. He made me grow up, and held my hand as I did it.”
He’d show up in this outrageous pink, sleeveless sweater – he didn’t give a damn. You couldn’t do that with impunityBefore long, Butler was sitting with Higgins in Heaven, handing out similar advice to young men newly arrived from the sticks. “We used to get a Friday and Saturday night intake into London. Young lads would show up to Heaven with their suitcases. Terry would be really protective of young guys coming on to the scene. He was amazing like that.” Higgins was a star at Heaven – partly because he DJd there, but mainly because he was Terry; a one-off. Butler says household names would stop to chat with them. “We were the heartbeat of Heaven. Freddie [Mercury] would come in. Jim Hutton, Freddie’s boyfriend, and I were drinking buddies for years. Kenny Everett was frequently in our corner. They were just mates, really.”
Both men later died from Aids-related illness – Mercury in 1991, Everett in 1995. Butler lost so many friends over the next decades. “I used to keep a record of people who died in the front of my Bible, and I remember one day looking at it – within five years, there were 50 names. All those people were DJs, dancers, backstage people.
“Even more upsetting sometimes were those people who were ‘family’ – people we looked out for and treasured and they just stopped coming.” They would disappear overnight, he says. “They’d go back to Birmingham or Northampton or whatever village they came from – and they’d never come back. You had no idea what kind of support they had when they went home. It might have been good, it might have been atrocious. And you used to think: well, if you’d been here, we could have held your hand; we would have been there for you.”
How did it affect Butler when Higgins died? “It left a huge hole, because when you have this family and you’re part of this thing that’s bigger than you …” He trails off. How did Whitaker cope? “Rupert aged about five years overnight.”
Shortly after Higgins died, Whitaker returned to London. He swapped from Durham to the University of London so he could be near Middlesex hospital in Fitzrovia, where his deteriorating health was being monitored. Like Higgins, he had not yet had a diagnosis, although his consultant had suggested it might be cancer.
Butler and Whitaker started meeting regularly with others who wanted to do something to help, in the London Apprentice, a pub in east London. But the rest of the community regarded them with suspicion. When they tried to hand out leaflets in other pubs, they were frequently chucked out. Elsewhere, they were told they wouldn’t get charitable status, because nobody had heard of a charity for sexually transmitted diseases.
About a year after Higgins died, Whitaker ran into the doctors who had treated him. There had still been no diagnosis. “I said: ‘Well, what did he die of?’ And they said: ‘We’re writing up his case in one of the medical journals and you can read it in there.’ I had no political awareness back then, but even then I thought that was fucking rude. I was the stupid little boyfriend and they had no duty to tell me anything.”
They also made it clear that they were astonished to see Whitaker. They expected him to be dead. Today, he is one of Britain’s longest HIV survivors.
It is impossible to accurately estimate how many people have died of Aids-related illnesses in the UK. There was such a stigma attached to the virus that people denied they had it, or only a patient’s final illness (such as pneumonia) was recorded on the death certificate.
At 22, Whitaker self-diagnosed after taking a western blot, the technique used to test for HIV. His diagnosis was later confirmed by the specialist team, who had known for some time, although Whitaker had not been told. “God knows why,” he says. Since then, he has had a number of close brushes with death. At 30, he was diagnosed with Aids. “I’d been reinfected unwillingly and my immune system crashed within three months. I’d been raped by somebody I knew.” He comes to a stop. “Sorry. It’s one of those situations where I find myself pretty inarticulate.”
Shortly afterwards, he had a severe stroke, unrelated to HIV. “I was living in northern California in the redwood forests. I was found on the floor of my cabin three days after I’d had the stroke.” Then he had a heart attack. His right coronary artery was found to be 99% closed. Whitaker says it is only in the past few years that he has started to think of himself as a survivor with a future.
In August 1983, 13 months after Higgins died, THT was formally recognised with a constitution and bank account. By November, it was a limited company with a board of directors. By January 1984, it had gained charitable status. THT was the first charity in the UK to be set up in response to the HIV epidemic. Its services included buddying/home-help, counselling, drugs and sex education. Under the stewardship of Nick Partridge, who started in the post room and was CEO from 1992 to 2013, it became the largest HIV charity in the UK and one of the largest in Europe. It has absorbed many smaller charities over its 40 years and now has 400 staff and more than 1,000 volunteers.
At the end of 1984, Whitaker won a scholarship to do a PhD in psychiatry and immunology in the US and stopped being actively involved in running THT. He is proud of the charity’s achievements. There was a period when he believes it overexpanded and became too corporate. “Rather than leading the discussion and creating vision, it was trying to be the best financially in the sector, sometimes at a cost to the people with HIV and at risk of HIV.” For a while, he says, he was made to feel unwelcome. Now, he says THT has got its mojo back under the leadership of Ian Green, who took over as CEO in 2016. “It has rediscovered its passion and is working on all cylinders.” Butler and Whitaker were awarded OBEs this month in recognition of their services to charity and public health.
Butler tells me how attitudes have changed since he was a young man – largely because of legislation. “The prospect of marriage, civil partnerships, adoption – of joint property ownership, even – were not on the cards. If I was 16 coming on to the scene today, I’d want a husband, a family, a career. I’d want it hassle-free and have every right to expect it. When I came out, all I was ever told was: ‘You’re going to be very lonely when you’re old.’” The doom-mongers were wrong on all fronts, he says.
Yes, he is alone, but he is not lonely. “I love it on my own. I own the remote, I own the calendar, I own the shopping basket. Nobody tells me what to wear or when to get to bed. As long as I don’t mind sleeping alone, I’m fine.”
Whitaker now runs the Tuke Institute, an organisation he founded in 2007 to promote integrated health services and a patient-centred approach to medicine. He tells me that he recently found one of the first pamphlets he wrote for THT and realised he was fighting for the same thing then that he is now – for the medical profession to look at the whole person, not just the diseased body.
As for Higgins, he would be 77 now. Whitaker says Higgins not only taught him about the possibility of love, but also the importance of expressing it. “That was remarkable to me. It was a revelation. It was wonderful. I’d never had that open affection. I get it from my current partner.” He often thinks about what the future would have held for them if Higgins had survived. “I wonder if Terry and I would have still been together. Probably not, but my partner now has a very similar personality to Terry.” He is convinced of one thing, though. “Even if we hadn’t been in a relationship, we would still have been very close.”
In the UK, Samaritans can be contacted on 116 123 or by emailing jo@samaritans.org or jo@samaritans.ie. The domestic abuse helpline is 0808 2000 247. In Australia, the crisis support service Lifeline is on 13 11 14 and the national family violence counselling service is on 1800 737 732. In the US, the suicide prevention lifeline is 1-800-273-8255 and the domestic violence hotline is 1-800-799-SAFE (7233). Other international helplines can be found via befrienders.org
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