IN THE summer of 1982, Terry (Terrence) Higgins became one of the first people to die in the UK after contracting HIV.

It wasn’t on the news. Far from it. This was a time when whispers of a new deadly virus were laughed away, and those who warned of a silent killer sweeping in from the US were shunned.

One of the earliest activists who called for more awareness of a terrifying new virus was Martyn Butler – who described himself as “a gay deaf man from Newport who wasn’t given a hope by his teachers”.

Now aged 66, Mr Butler is back in Newport, returning 15 years ago to be closer to his family after spending 34 years in London.

But after watching Russell T Davies’ hit show It’s A Sin bring the AIDS crisis back on the agenda, he has been reflecting on life at the heart of a gruelling period in history for gay men, his role setting up the first and most successful HIV charity in the UK after his friend Terry’s death, and why lessons should be carried forward to protect against the damaging psychological impact of the coronavirus pandemic.

“If I put it all in a book you wouldn’t believe it,” he says, thinking back over the last 50 years.

Born in Pill, Mr Butler left for London in 1972 after a difficult childhood.

He attended Duffryn School at a time where education for deaf children was, as he puts it, “embarrassing”.

“They called us deaf and dumb in those days," he said. "They didn’t put any effort into me at all. I was helpless really. ‘You’ll be good for nothing other than stacking shelves’ my careers tutor told me.”

We Are Voice: Martyn back where it all began, at the Dolman Theatre

Martyn Butler back where it all began, at the Dolman Theatre

He left Newport, where he had spent a lengthy period learning his trade in the cinema and theatre industry at the Dolman and the ODEON among other places, when he was 17.

An avid train spotter, he had spent many weekends up to then travelling around the country, and had become an expert at the London Underground.

“I knew it like the back of my hand by the time I was 16,” he laughed.

“My efforts at the Dolman and ODEON paid off – as did my knowledge of the trains – when I got a job at the Warner West End cinema at Leicester Square.

“It was a brilliant time, and then I got into lasers when I first went to Heaven nightclub – or Heaven ultra-disco nightclub as it was known then – when it first opened in 1979.

“It was the first club in the UK where I saw these fabulous lasers shining across the dance floor.

“I was also brilliant at lip-reading because of my deafness, so Heaven almost became my home really. I loved it there because I was like everyone else.”

Mr Butler had found “his scene”, and went on to work as a laser creator and technician throughout the eighties and nineties, spending 25 years in the city’s top gay nightclubs and TV studios.

It was in Heaven – a place where Mr Butler and his friends and partners experienced so much joy – that tragedy also struck.

The first was in 1982 – when his friend Terry collapsed while performing a DJ set. It had happened twice by that point, and Mr Butler and Terry’s partner Rupert Whitaker knew something was wrong.

“I wouldn’t say we didn’t have a clue it was HIV,” Mr Butler said. “Terry went into hospital not long later, but he was still laughing and joking. Perhaps he didn’t know what was to come because he was the first [known British person to contract HIV].

“That was the saving grace I suppose – he didn’t know what was coming.

“After Terry died Rupert fought so hard to get HIV recognised as the cause of death. Once we had it in writing after the autopsy, we knew we had to do something about it.

“HIV hadn’t been identified as the cause of AIDS at that point. No-one knew how deadly this was.”

The Terry Higgins Trust – later to become the Terrence Higgins Trust – was set up in 1982 with the intention of preventing others from having to suffer as Terry had.

We Are Voice: Martyn near his home in Newport city centre, reflecting on his time in London

Martyn Butler near his home in Newport city centre, reflecting on his time in London

It focused on raising funds for research and awareness of an illness then dubbed “Gay-Related Immune Deficiency”. Now more than 50 per cent of people who have HIV in the UK are heterosexual.

Remembering Terry, Mr Butler said: “When all these gay nightclubs started popping up around London I was a bit of a wallflower. I liked it but I was very quiet. Terry was the opposite. He was flying – a real character.


“I met him in Heaven one night in the late seventies, and he took me under his wing really. We were both Welsh boys and there was a kinship between the Welsh lads.

“Colin in It’s A Sin resonated with me a lot for that reason. I was quiet like that – unassuming.

“When I found Terry, I very much felt as though I had found a treasure.”

In It’s A Sin, Colin – who is the opposite of promiscuous [as the media often depicted gay men at the time, and since] – dies after contracting the virus.

Roscoe, a lively and promiscuous drag queen who loves a party, doesn’t get HIV.

“There were many Colins,” Mr Butler said. “That’s perhaps one of the most heart-breaking things of that time.”

Not long after Terry died Mr Butler’s ex-partner also died aged 22.

“I had two relationships with him. I had a phone call one day to tell me he was at the Lighthouse [hospital].

“It was November 5. I vividly recall walking into that room and seeing him. It was like looking at a skull. His mother had come down that week from Liverpool – to find out her son was gay, had HIV, and was dying.

We Are Voice:

Colin in It's A Sin, who Mr Butler said reminded him of many others who died during the eighties and nineties. Picture: PA

“I remember walking in and trying to be as upbeat as possible. I pulled a fag from his mouth and insisted it was bad for him. There were a few laughs about that – it didn’t really matter what was bad for him at that point.

“They thought he’d die that week – and yet he lived for another month. I don’t know what it was that kept him going.

“Those ten days [before he died] were awful. His organs slowly dying, but he had a 22-year-old heart, and it wouldn’t stop fighting. You wouldn’t have put a dog through it.

“I recently saw a man walking in John Frost Square [Newport city centre] that looked just like him. My heart jumped with excitement for a minute, and then I remembered we buried him. That always hurts.”

Mr Butler went to 50 funerals for friends who had tested positive in the eighties.

“I stopped at 50 – I just couldn’t take it anymore," he said. "I always wrote each man’s name down who we’d lost. And then I stopped. It felt like it had lost its meaning. Like recording train numbers.

“I regret not writing those names down now, because I have forgotten so many of them.”

Many of the men didn’t have a funeral – they just disappeared.

We Are Voice: Martyn and Russell T Davies, who has received much acclaim for It's A Sin

Martyn Butler and Russell T Davies, who has received much acclaim for It's A Sin

“You knew [they had contracted HIV]. They had just gone, back home to die. Many of them didn’t say ‘goodbye’ – perhaps they couldn’t bring themselves to.

“Some weren’t even dying – but a diagnosis back then was a death sentence, and many gave up on life as soon as they got the news. It was their cue to leave London behind, and leave life behind.

“You’d stop asking how people were when you went clubbing – because everyone knew really. We associate friends with other, more distant, friends. But you couldn’t ask about them anymore. You wouldn’t dare – because there was only one reason they’d not been seen for a while.”

Some had brilliant send-offs. He remembers going to a party on a boat to celebrate a dear friend’s life, and another all-white clothes party, where a man died on the sofa.

With his friends dying all the time, Mr Butler still gets angry about how long it took for HIV to reach the national headlines – and television screens.

“When people think of the AIDS epidemic they think of the ‘Don’t Die of Ignorance’ advert – but let’s not forget that was 1986. Terry died in ’82. The trust had been fighting for four years to get this in front of people.”

And Mr Butler and his friends at the trust were not only being ignored – they were often shunned, and sometimes assaulted for their work.

“There is a scene in It’s A Sin where a man goes into Heaven with leaflets, trying desperately to make people aware of this killer. He was chased out.

“But that wasn’t truly reflective of the time. There was a lot of hostility towards HIV activists.

“And even when people knew more about the virus as the decade went on, they were reluctant to take our advice on board.

“Very often I was thrown out on to the street and the leaflets were thrown out with me. One man called me the ‘Gay Mary Whitehouse’ – which stuck with me as it hurt a lot. Mary Whitehouse was loathed among all gay communities.

“People didn’t trust us – our books had to be even more thorough, and our transparency had to be even more clear.

We Are Voice: Martyn used to sneek into the stage door at the Dolam to get on in the theatre and cinema industry, and he's back now

Martyn Butler used to sneek into the stage door at the Dolman to get on in the theatre and cinema industry, and he's back now

“I can’t tell you how many times we got asked ‘where’s the money going?’. That really hurt. People were dying, and we were being accused of manipulating the situation.”

But under the surface, in homes across Britain, people were panicking, and Mr Butler’s phone wouldn’t stop ringing.

“It was a really tough period for me for probably two years after we started the trust," he said.

“I hardly ever slept properly. My number was the only one given out, because it was just a handful of young guys trying to organise a charity to tackle this huge virus.

“People were scared, and the vast majority of the people who rang us had no reason to be. There was next to no chance they were going to contract it.

“But we were the only people talking about it at the time, and so it became very busy very quickly. People couldn’t go to the doctor to talk about it – they felt ashamed.

“I changed my name for a while because every media organisation and person interested in HIV was finding me.”

The way the media presented HIV and its threat in those years still rankles.

“I was getting calls every week from a journalist who had a preconceived idea of what they wanted to write," said Mr Butler. "They would ask me questions and I don’t really think it mattered what I said, because my words would get twisted anyway.

“Our media department became very adept very quickly, as you can imagine.”

Asked why he became one of the two main faces of the movement at the beginning of the eighties, he said: “I reluctantly took on the role as a lead with the trust. I certainly wasn’t a confident person back then – I was a deaf gay boy from Newport. But when Terry died there weren’t many stepping up for the cause other than Rupert. I was basically the only one standing up – and decided if it had to be me then so be it.”

Reflecting on what the trust has achieved since, in contributing to the advancement in science and knowledge to this point – where those who contract HIV are likely to live a full and healthy life, and are unable to transmit the virus to others, provided they take their medication – he said: “The biggest thing for me is how humbling it is when I hear someone doing something to help the trust – even if that’s donating ten pence.

“I am proud – because if we messed up all these years ago then who knows where we’d be now? We may never have got another stab at it.

“People didn’t like us generally. We couldn’t get the banks to have our money.

“Every week I’m excited about the trust. This month the trust is thrilled over the possibility of a new injectable PrEP that can be taken once a month to protect against HIV. How brilliant would that be?

“But there is still a long way to go. People are living now without a clue they have HIV. So the campaigns we started in the eighties are still very much needed.

“Compliance also still needs to be pushed. Taking some pills every day sounds easy, but it’s not easy for so many – and the mental side of having HIV isn’t easy. So the work the charity does is crucial.”

Campaigners like Mr Butler fought to bring awareness of the virus to the fore at a time when they faced a very real possibility of contracting it themselves.

We Are Voice:

Mr Butler says It's A Sin brought back lots of memories, that he thought he'd 'filed away neatly in a cupboard'

“There were a few times where I thought I might have it," he said. "I once had glandular fever and was bed-ridden for two weeks. Swollen glands were one of the major symptoms.

“I went to St Mary’s Hospital in Paddington – and I was told to go home and get my affairs in order. I hadn’t even had a test.

“Every time you were seriously ill people jumped to the conclusion it was HIV.”

There was relief – but also immense guilt – now known as survivor’s guilt, and often linked to people who lived and lost loved ones during that time.

“I never quite got over that. It still crops up when I speak about it.”

He fears the coronavirus pandemic could have the same impact.

“I stayed on my own for Christmas because I saw too many people die. And I couldn’t watch others suffer, and then be left with that guilt.

“As sad as it for those who die, there is a hell of a lot of pain for those left behind if they are not treated with compassion and dignity.

“Our consultants, senior nurses, all NHS staff, families of those who have died – they all need help now.

“If they don’t get that help – the help we didn’t get – they will be left to bear the brunt of that pain for the rest of their lives.”

He “absolutely adored” It’s A Sin and its “brilliant representation” of life at the time.

We Are Voice: Martyn with another HIV expert former Lord Speaker Norman Fowler

Martyn Butler with another HIV expert, Lord Speaker Norman Fowler

“It was genius – which is no surprise because Russell is a genius.”

He thinks the screenwriter – widely criticised for saying he believes straight actors can’t play gay parts – got it “spot on with this cast”.

“I don’t agree that straight actors can’t play gay parts. But the way that cast came together really took that show to another dimension.

“It could have been the best straight actors in the world giving the performance of their lives, and I’m not sure I’d have really believed it in the way I did with that cast.”

This week he called out journalists for hypocrisy over headlines calling the show’s sex scenes “shocking” compared to “hot” scenes in Netflix series Bridgerton.

“Doesn’t it annoy you too? We should call out this hypocrisy whenever we see it. I can’t let those things go by – I never have done and won’t start doing so now.

“You can take the activist out of London, but you can’t take the activism out of the boy.”