Love, Loss & Life: Real Stories From The AIDS Pandemic

Love, Loss & Life: Real Stories from the AIDS Pandemic: Nick Partridge & Janet Green

November 24, 2022 National HIV Story Trust, Anita Dobson, Elexi Walker, Chris Ashman Season 1 Episode 3
Love, Loss & Life: Real Stories From The AIDS Pandemic
Love, Loss & Life: Real Stories from the AIDS Pandemic: Nick Partridge & Janet Green
Show Notes Transcript

This podcast represents just two examples of many stories from the full form Audiobook "Love, Loss & Life" published by the National HIV Story Trust.

 After studying International Relations at Keele University, Sir Nick Partridge was living in Amsterdam when news of an illness affecting gay men in America started to percolate through to Europe. He returned to England, volunteered for Gay Switchboard, and then in 1985 secured a job as office administrator with the Terrence Higgins Trust (THT), the first charity in the UK to be set up in response to the AIDS pandemic. He went on to become its Chief Executive from 1991 to 2013. Honoured with an OBE in 1999 for his services to charity and knighted in 2009, he was named by the Independent in 2010 as one of the top 100 most influential gay and lesbian people in Britain. 

Having graduated with a degree in social sciences and having qualified in social work in 1981, Janet Green was a volunteer on London Lesbian Line before starting at the Terrence Higgins Trust at the same time as Nick Partridge, sharing an office with him as the charity’s first two paid employees. In her role as Counselling Co-ordinator, she was for the next eight years instrumental in setting up many of the charity’s counselling and befriending initiatives. Afterwards, she continued to specialise in HIV as a local authority social worker, later working more generally in disability services, until her retirement in 2007. From their different perspectives, Nick and Janet look back at the early years of the Terrence Higgins Trust and the support it offered to those with HIV and AIDS. 

This podcast series features stories taken from our first book, a collection of essays, reflections, and testimonies also entitled ‘Love, Loss & Life’ which you can buy here.

An audiobook is also available here.

Visit the National HIV Story Trust website

Elexi Walker:

Love, Loss & Life Real Stories from the AIDS Pandemic. This is the Sir Nick Partridge MBE and Janet Green story. Read by Christopher Ashman and Elexi Walker with an introduction by Anita Dobson.

Anita Dobson:

After studying international relations at Keele University, Sir Nick Partridge was living in Amsterdam, when use of an illness affecting gay men in America started to percolate through to Europe. He returned to England, volunteered for gay switchboard, and then in 1985, secured a job as an office administrator with the Terrence Higgins Trust, THT, the first charity in the UK to be set up in response to the AIDS pandemic. He went on to become its chief executive from 1991 to 2013. Honoured with an OBE in 1999 for his services to charity and knighted in 2009, he was named by the Independent in 2010 as one of the top 100 most influential gay and lesbian people in Britain. Having graduated with a degree in social sciences, and having qualified in social work in 1981, Janet Green was a volunteer on London Lesbian Line before starting at the Terrence Higgins Trust, at the same time as Nick Partridge sharing an office with him as the charity's first two paid employees. In her role as counselling coordinator, she was for the next eight years instrumental in setting up many of the charities counselling and befriending initiatives. Afterwards, she continued to specialise in HIV as a local authority social worker, later working more generally in disability services until her retirement in 2007. From their different perspectives, Nick and Janet look back at the early years of the Terrence Higgins Trust and the support it offered to those with HIV and AIDS.

Christopher Ashman:

My father told me it would be a mistake to apply for a job with the Terrence Higgins Trust as once it was on my CV, it would blight my future career. I went ahead anyway. By then there was a clear sense of foreboding among gay men in Europe. The number of people diagnosed in the US was doubling every six months and to use Larry Kramer's words, the body count was rising. There was controversy still about how HIV was transmitted. Could you catch it through kissing? Through oral sex? Through mosquito bites? Through a simple touch? We were quite rightly fearful of a new infectious disease and outraged that governments around the world were ignoring it. Society split between those who saw the need for care and compassion, and those who wanted to distance themselves and ostracise people with HIV. I knew which camp I wanted to be in. At the start, the Terrence Higgins Trust like gay switchboard was wholly volunteer run. Terry Higgins was one of the first men in the UK to die with AIDS, and it had been founded in his name by his lover and friends. Footnote Rupert Whitaker here later in the book, Tony Calvert, Martin Butler, Len Robinson and Chris Peele, later joined by Tony Whitehead, who became the first chair of its steering committee. Most of the people involved were volunteers in their 20s and 30s, and had scant understanding of how to work with health services, social services, local and central government, how to raise money, how to apply for grants or even how to become a charity. It was a steep learning curve. When gay switchboard had applied for charitable status a few years earlier, the Charity Commission has rejected their application on the basis that in their view, the provision of support and information to homosexuals was not an appropriate charitable activity. THT learned from that and when it applied for charitable status in 1983, instead of emphasising the gay community, it hinged the application on its support for people with AIDS.

Elexi Walker:

Until the 1980s gay men and lesbians rarely mixed. They had their bars. We had ours. We even had separate Pride marches. I remember a colleague on the London Lesbian Line saying to me, why on earth would you want to go and work with gay men? But there had been a time in my life when gay men had been very kind to me. And although what I knew about the scientific side of HIV and AIDS would barely have covered the back of a postage stamp, I was becoming increasingly concerned and angry about the media coverage. Young men were getting ill and dying and being reviled by the tabloids. One newspaper campaign suggested everyone with HIV should be dumped on the Isle of Wight in a kind of leper colony. I wanted to do something. During the job interview, I asked how many other women were involved in the Trust. There was a long pause, and some shifty looks. 'About 10', someone said. There were actually two, and that included me. But it soon changed. That first day, there was Nick Partridge sitting across the desk from me. We smiled at each other. And I think he was as bewildered and unprepared as I was, but we made it up as we went along. If it worked, great. If not, we tried something else. The offices were in Clerkenwell and it was the most dilapidated, rundown building I'd ever worked in freezing in winter, boiling hot in summer, overcrowded. I was constantly having to shoo volunteers off my desk. I was working 12 or 14 hour days. It was emotionally tough and full on. But I loved it. There was surprisingly a lot of laughter. We all felt we were in it together. There were no sharp dividing lines between volunteers and service users, and I found myself supporting both. I started by developing training for the helpline. There was already a buddy service, but it was in its infancy with referrals, which tended to be done on the back of a cigarette packet. So it needed to be organised and professionalised. Especially as we soon began to gather more and more volunteers. Footnote the buddies close the gap between an HIV test and professional counselling services. Buddies do not offer classic professional advice, but let others share their life experiences.

Christopher Ashman:

We may have lacked experience, but we did have a blueprint. In the US, gay organisations had already pioneered the buddy system to support people abandoned by their families, and that became the living heart of THT. We shamelessly stole from the training manuals our American colleagues had devised and assigned volunteers to local groups, each covering a different area in London. As soon as the call from the hospital came in, a suitable buddy volunteer would be briefed. incredible friendships were created as a result. There was very little money. A Grant had been secured from the Greater London Council, GLC, under Ken Livingstone read Ken, the right wing press called him to fund my post and that of Janet Green. But the conservative run Westminster City Council led by Dame Shirley Porter took the GLC to court to prevent the money being paid. Footnote. Ironically, Westminster was to become one of the London boroughs most affected by AIDS. We were saved by an astounding level of support from drag queens like Lily Savage who put on benefits for us in pubs and clubs and later theatre people and musicians like Elton John. Without them, the charity would not have survived. Soon we had the helpline, buddy group, health promotion group, a counselling group, a welfare rights group, a medical group whose task was to interpret the latest developments in scientific understanding of the virus, a legal group who fought cases of unfair dismissal, and an interfaith group which provided a space for gay men and women of faith to come together. It produced for instance, a leaflet, 'Is The Chalice Safe', setting out the facts of HIV transmission for people worried they might pass on or pick up the virus if they participated in Holy Communion. There will always arguments egos squabbles over funding and priorities and sometimes the steering committee meetings went on long past midnight as people jockey to promote their particular corner. But it was an extraordinary blossoming of community activism. We broke new ground In finding ways to get the message across about safe sex, knowing we would be listened to in a way a government campaign might not be. No gay men used condoms in 1980. But many, many did so by 1985. Our health promotion group provided leaflets promoting condom use and as a side benefit, we saw a dramatic drop in cases of gonorrhoea, syphilis and other sexually transmitted infections. It's something we should always be immensely proud of as a community. Because not only did we change risky sexual behaviours, we also started the country talking about sex in a way it had never done previously. There was a mistaken belief before AIDS that sex had become safe for the first time in human history, with the pill to prevent pregnancy and antibiotics to cure most STIs. But now, sex was dangerous again. And the only way to eliminate the danger was to talk about what goes on in the bedroom, gay or straight. At that point, we began to realise how little we knew about the sex lives of gay men. If you are going to deliver effective health campaigns around sex, or indeed drug use, you have to route those in evidence and prioritise the greatest risks. It caused huge and often hilarious rows in our meetings. Because each thought his own sex life represented what the majority of gay men did. So we carried out surveys and asked people to keep diaries to gain a better understanding of the wonderful diversity of gay men sexual behaviour. How many were in long term couples? How many serially monogamous, and how many partied wildly with lots and lots of different partners? Not nearly as many as you might imagine, from press reports. I've always loved the fact that THTnever lost its sense of humour, and was never anti-sex.

Elexi Walker:

In the wider community, there was a lot of fear. We were getting sacked loads of letters from worried people who needed help. Unfortunately, there were also quite a few letters from bigots written in green ink and capital letters, which went straight in the bin, but were nonetheless upsetting. We heard of patients in hospital whose meals were left outside the door of their room of hospices that wouldn't take them, of undertaker's who refuse to bury them. One day, we were having new office furniture delivered. And when the delivery men realised who we were, they refused to come in and left our new chairs on the pavement in the rain. Insurance companies wouldn't insure anyone who took a test for HIV, even if they tested negative. Simply getting tested regardless of the result was considered a verdict on your lifestyle and damned you. People with AIDS were excluded from some benefits such as disability living allowance, or attendance allowance. Even though they would be dead soon, iIt was felt they weren't ill enough. One man I knew cunningly dropped a tab of acid just before his assessment and behaved so bizarrely, it was concluded he had dementia, and therefore qualified for a benefit. At first, we were only seeing gay and bisexual men. Though later, there were some women, usually injecting drug users. In 1985, there was no treatment for the virus. And people understood that a diagnosis meant they were going to die. Some seem to lose the will to live and died quite quickly after being diagnosed. Others said stuff this, I'm fighting back. A volunteer, Jim Wilson was one such. When people called for help, I would sometimes say, 'Would you like to meet someone who's already been diagnosed'?, and Jim would travel right across London at the drop of a hat. He identified the need to do something for men with HIV in prison and set up a prison visiting service. He was into his leathers, had the moustache, a clone, as many gay men were at the time. Tall, thin, dark and incredibly handsome. But he was also funny and feisty, and had a strong sensitive side. I heard about one meeting of volunteers, where there was a woman in the room. Some of the gay men didn't like it and were being bitchy. But Jim said, 'Are you completely stupid? Because when we get ill, who's going to be left to look after us? It's going to be our women friends'. Much as I tried to keep a professional distance, some people I met there did touch me emotionally. And Jim, he became a close friend, was one of them. I was devastated when he died.

Christopher Ashman:

AIDS brought together gay and lesbian communities in a way not seen previously. You have to remember that gay men and women had very different histories. And there had been few places where their interests were seen to coincide. Indeed, there was an element of traditional misogyny among some older gay men. But so great was this crisis that lesbians saw gay men needed help, as did many sympathetic straight people, and came forward. All of us I think we're afraid AIDS might be used as an excuse to roll back the small advances in equality we'd gained, which helped forge the alliance between lesbians and gay men. Footnote a fear crystallised later in 1988 by Section 28 of the Local Government Act, which sought to prevent the promotion of homosexuality by local authorities and in schools. As a result, we were able to build on what had been learned from the feminist health movement in the 1970s, which aimed to de medicalize services like maternity care and gynaecology and make them more responsive to women's needs. The best of the doctors and nurses we dealt with understood immediately that without listening to what people with AIDS were saying, it would be much harder to come up with treatments or care that worked. We were also fortunate that although the Department of Health was determined not to be seen as kowtowing to a bunch of gay men, the Chief Medical Officer at the time, Donald Acheson was an epidemiologist, and sympathetic. He gave me his private telephone number and told me to call him at home. So civil servants in the department couldn't listen in. We also had a sympathetic response from the Secretary of State of Health, Norman Fowler, who set up a separate Cabinet Committee on HIV to take decision making away from the cabinet as a whole and the baleful influence of Margaret Thatcher. Footnote. Lord Fowler went on to become a patron of the Terrence Higgins Trust and has also contributed an essay to this book. There were those in the gay community who thought we'd lost our radical edge and shouldn't be cozying up to the establishment, but to be effective bringing about change, you can't remain on the outside lobbing hand grenades in. If you are to have a long term determined and effective response, you have to occupy some of the central ground to win the respect of decision makers in government and the professions.

Elexi Walker:

I felt so sorry for the younger gay men who were angry and despondent and wanted their mums, though they couldn't always call on their mothers for support. Though some were cared for lovingly by parents and siblings, others were completely abandoned by friends as well as family. Many faced the dilemma of coming out to their families as a gay man. At the same time, they had to reveal they had HIV or AIDS. And though that was always heart wrenching, sometimes it could be humorous. One lad went home to his parents for the weekend to break the news. There was a sharp intake of breath until his father, obviously completely flummoxed came out with, 'Son, the world has just fallen out of your mother's bottom'. Whether his parents managed to laugh when they realised how dad had heard the words, I have no idea, but we howled about it in the office.

Christopher Ashman:

As we grew as an organisation, and became more professional, some of that initial improvisatory spirit had to fall by the wayside. There were clashes. It's heartbreaking to have to agree a policy on the number of funerals staff can attend in paid time, or deal with disgruntled volunteers, when unions quite sensibly insisted we institute a no smoking policy in our new building. "We're giving you our time, and now you say we can't smoke. It's AIDS killing us, not the odd cigarette in the office." But the commitment of both staff and volunteers was extraordinary, a life affirming response to the cruel and hostile circumstances in which we found ourselves. Funerals became celebrations of life, where the instruction was to wear something bright, not black. Funerals with glitter balls, funerals, where the coffins slid through the curtains accompanied by a joyous disco track. I like to think we played a part in changing the way many funerals are now conducted in the UK. The wakes were amazing, though new dilemmas emerged. What's the etiquette of cruising at a funeral?

Elexi Walker:

When I had to leave THT, made redundant as a result of a funding crisis in 1993, ironically, only shortly before Freddie Mercury died and left the charity a large bequest. I was heartbroken. I continued to work in HIV services for a local authority, where I was dealing with many more women now, many of them immigrants from Sub-Saharan Africa, whose plight was desperate.

Christopher Ashman:

The lowest point was for me 1993. As well as funding difficulties, the results of the first international clinical trial into the efficacy of AZT, the main treatment at the time, were really disappointing. The numbers dying, and the numbers diagnosed each year were increasing. You couldn't travel to the US if you had HIV. Jim Wilson was discovered with AZT in his luggage when he flew into Philadelphia, and was put on the next plane back. Everything seemed to be going the wrong way. Yet still we soldiered on. Little did I know that less than three years away was a real breakthrough in terms of treatment, one that would completely reverse the curve. The only sadness was that it would come too late for so many. Now, I know that we helped bring that about. Between 1983 and the late 1990s. Close to 300, charities were set up in the UK with HIV and AIDS as the core of their work offering a real diversity of service provision. Together, we managed to change the public understanding of what it means to be gay, and build the case for equality. And if you told me in 1985, that one day, I'd be able to marry my long term partner Simon, I'd have thought you were lunatic. We should be immensely proud of all that we achieved.

Elexi Walker:

Looking back at the legacy of that time, it was the beginning of a different sort of gay community. Gay men have always had women friends, but we came together in a different way. With more and more lesbians becoming buddies at THT, or volunteering on the helpline. There was a feeling that these were our people, and we were all in it together. Such strong friendships were forged in those years, resulting in men and women standing shoulder to shoulder at Pride marches, and the widening of the movement to include all variations of sex and gender. I'm so grateful I was there and played a part. Thank you for listening to this story from Love, Loss & Life, a collection of stories reflecting on 40 years of the AIDS pandemic in the 80s and 90s. To find out more about the National HIV Story Trust, visit NHST.org.uk. The moral rights of the author has been asserted. Text copyright, NHST 2021. Production copyright, NHST 2022.