I came out in 1969 when there was only one club for women, Gateways. Lesbians were more or less invisible – or to be ridiculed or feared. I was out, but I didn’t shout about it. By 1980 I was a mature student studying towards a social work qualification, and afterwards I chose to work with voluntary organisations. I was a volunteer on London Lesbian Line before I joined the Terence Higgins Trust.

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. The more the media fueled the fire, the more hostility and fear there was in the world. One newspaper campaign suggested everyone with HIV should be dumped on the Isle of Wight in a kind of leper colony. It was deeply unpleasant and upsetting. I wanted to do something.

  In 1985 THT had just received a grant from the GLC and advertised for their first two paid workers – an officer manager and a director of clinical services. I decided to apply because I was so concerned, so angry and upset about what was happening in the news around HIV and AIDS. 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 ten,’ someone said. There were actually two, and that included me.

I got the job. On the one hand, I was delighted to be offered it. On another level, I thought, who on earth is going to employ me after working with HIV and AIDS? The level of stigma and fear in society at that time was enormous.

  The offices were in Clerkenwell and it was the most dilapidated, rundown building I’ve ever worked in: freezing in winter, boiling hot in summer, overcrowded.  There were two rooms: one for the helpline, and an office. I was constantly having to shoo volunteers off my desk. When I started, I’d only been qualified as a social worker for three years. 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. None of us really knew what we were doing, but we made it up as we went along – if it worked, great. If not, we tried something else.I asked if I could change my title to ‘Counselling Co-ordinator’, because I didn’t know what ‘Director of Clinical Services’ did.

I was working 12 or 14-hour days and, of course, a lot of our volunteers also had a diagnosis. It was emotionally tough and the workload was full-on, but I loved it. There was, surprisingly, a lot of laughter. The place was buzzing. 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. It needed to be organised and professionalised, especially as we soon began to gather more and more volunteers. I developed counselling services, and the hardship fund. We did whatever needed to be done, always in collaboration with volunteers.

In 1985 there was no treatment for the virus, and people understood that a diagnosis meant they were going to die. Some seemed 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, who became a close friend, was one of them. I was devastated when he died.

We worked with purpose and passion, but in the wider community, there was a lot of fear. We were getting sackloads of letters from worried people who were at risk and needed help. Unfortunately, there were also quite a few letters from bigots, written in green ink and capital letters. We were the spawn of the devil; terrible, disgusting people. Of course, they went straight in the bin but were, nonetheless, upsetting and unnerving. 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. We heard of patients in hospital whose meals were left outside the door of their room, of hospices that wouldn’t take them, of undertakers who refused to bury them.
I found it astounding and despicable.

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, it 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.

Gradually, the profile of service users began to change. In addition to gay men, we had some injecting drug users, and quite a few African women, particularly from Uganda. Because there had been civil unrest in Uganda, their stories were frequently very similar. Often they’d been raped by soldiers who knew they had HIV. The women had become infected and had also, in some cases, become pregnant. Their children had been born with HIV. Somehow they’d managed to get out of the country. Their stories got to me. There was no treatment beyond pain relief. They knew they would die.

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. It was shameful. 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 the words had been muddled I have no idea, but we howled about it in the office. Even in the darkest days there was always something to laugh about.

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. I finished my career at Lewisham Hospital.

I worry about young gay men today who don’t think that they’re at risk of HIV and AIDS and aren’t practising safe sex. I think I was the first person on Women’s Hour ever to say ‘non-penetrative sex’! We don’t want another battle like we had in the 80s.
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.