When I started work in 1985 for Wandsworth Social Services as an occupational therapist, you couldn’t not hear about HIV if you listened to the news.

My job entailed visiting people in their own homes to make their house suitable for their physical needs which, for people with HIV, tended to be weakness and incontinence. Facilities to support might be having a bed that was the right height, or perhaps the use of a chair to get around. Practical things. Money was ring-fenced for people with HIV and AIDS. It was an expectation that those with the diagnosis would die, so we would prioritise seeing them and aim to visit within a week of a referral. We wanted to make it as good as possible for them. Very often they wanted to die in their own home. I always went to their funerals. When you visit one-to-one, you get to know people at quite a personal level.

The council training went into great detail around how infectious HIV was, but in a climate of stigma and fear, there was a drive to ensure that we had the correct information in order to avoid prejudice. On a social level, contact was fine. We knew it wasn’t a problem to share cups, for example. There wasn’t any reason to be anxious about catching anything – unlike in the case of hepatitis C, which was considered far more infectious. I do feel I was incredibly lucky to find that job. It was a privilege to have a specialist role around people with HIV. I had a day and a half a week that I could devote solely do that work.

I can remember, though, one of the district nurses saying, ‘I don’t know what I would do if my son was gay.’ I knew by then that my own son was gay, and that felt like a great, wet, slap across the face.

Sometimes, when I visited a family, if the parents were there then I might say that my son, Matthew, was gay, and I’d certainly tell some of the men themselves.

Matthew himself had come out to me a few years before, when he returned from his first term at university. He was 19. I said to him, ‘I don’t mind that you’re gay, but please don’t get ill.’ I really thought he wouldn’t live to be 25, because most of the gay men I knew then were those that were sick that I had met through work. On one hand, it was terrifying. But I was struck by how the gay couples I met cared for each other in very beautiful and thoughtful ways.

One couple had a lovely, well-tended garden. It was heart-breaking to see the ill partner wearing padded jeans so that people couldn’t see how thin he was. He’d grown lots of rosemary and he kindly gave me some to plant in my own garden. It was really sad going to his funeral. I shed a lot of tears when people died. But there were lovely, wonderful liturgies. I think that death came out of the closet because of people being so articulate about death, although I’m not the first person to have made that observation.

By the mid-nineties, we learned that one of Matthew’s long-term partners was HIV. My youngest daughter was doing a project on diets for people with HIV as part of her A-level study at the time. It felt as if the whole household was surrounded by HIV. We all had to eat these disgusting root vegetables as part of her project. I found out that Matthew himself was HIV much later, and only by accident.

  After I’d retired from occupational therapy, I did a course for the Church of England in Southwark. Along with three other women, I did a project on homosexuality as part of God’s world. The four areas we explored were fear, prejudice, ignorance and invisibility. Through that project I heard about an organisation, FFLAG (Friends and Families of Lesbian and Gays). Families Together London grew from that, a group of volunteer parents who meet together. Some parents would hate to say they needed ‘support’, while others report feeling isolated by not being able to talk about having a gay child or, increasingly now, a trans child.

Some years ago, a woman who was doing research into the group contacted me and, as she was putting down the telephone, she said, ‘Well, I’ll get back in touch with you if I meet any other parents whose child is HIV.’

  Matthew hadn’t told me.

We were scheduled to go to the theatre that evening, and while we were waiting to go into the show, I told him that I’d found out. Nothing is more upsetting than being shut out. I was angry. He’d kept it quiet for a long time. I was hurt that he hadn’t told me, especially because he knew I worked with parents of children with HIV, and had worked with HIV patients in the past. I was sad that he felt he couldn’t tell me, because I have always tried to be as open as possible with my children. That sadness manifested as anger. I wondered if I’d ever said anything that would somehow make him think I was prejudiced. Afterwards, we talked about HIV a great deal. He’d thought that I would die before he did, so there was no need to tell me. Somebody else said to me that when they were diagnosed, they were advised not to tell their parents. Perhaps Matthew was given the same advice.

Since then, my private crusade has been to find other parents like me, because while the secrecy goes on, so does the stigma. When I think back to first working as an occupational therapist, people used to whisper about cancer. Now nobody whispers about cancer. By and large people are open about what kind of cancer they’ve got and what their prognosis is. Today, HIV is no worse than being diabetic for example. You can live a normal life, thanks to the medication. Yet people are still ignorant. Whenever I discuss Matthew, I say he’s HIV, and make a point of saying that he’s really well. Firstly, because that’s the truth, but also because I want to dismiss the notion that he might die soon. I mean, anybody might die soon. As far as I understand, he’s no more likely to die of HIV than any other kind of illness. He might get run over or have a heart attack. His life is not defined by HIV. But I’m acutely conscious that I don’t know of other parents like me who are happy to say their child is HIV. That’s why I keep on telling everybody. My daughters say, ‘Oh, for goodness’ sake, you know, nobody else wants to know about Matthew’s status’, but it’s a sad fact that families, mothers, often don’t want to talk about it, because they don’t know what the reaction’s going to be from other people towards them.

I’m a lone voice. I don’t know how average I am as a mother. I’m trying to be a visible presence for parents, because within our family other secrets have not been good. I was pregnant before I got married, which carried a huge stigma at that time. But from the word go my baby was told he was conceived before we were married. As a couple we decided we weren’t going to be secretive about that particular fact.
I have had fewer than five parents talk to me in recent years, so that shows what stigma and secrecy remains. I listen. That’s all. Give accurate information. I’m not a therapist. I’m just a parent who’s happy to tell her story, but I can’t give advice.

Parents have all sorts of concerns. Often they are scared about their child’s health, particularly if their child doesn’t lead a very healthy lifestyle. Perhaps there’s much more temptation around chemsex, using drugs as part of your sex life, for example. Or they worry that their child might get HIV, that they won’t have a grandchild, that he or she won’t be as happy as a heterosexual couple might be, or that they won’t find a partner at all. Ordinary things that you’re equally worried about for your straight children as you would be about your gay child. I would hate not to have a gay son, but the majority of the parents that come would prefer their child not to be so exercised about their sexuality, even though coming out is undoubtedly easier for young people now than it once was.

And there are still plenty of places where it doesn’t feel safe to say you’ve got a gay child. Some faith backgrounds continue to deny the existence of gay people. It’s weird that even today that level of ignorance and misinformation survives, even though legislation has changed dramatically, thanks to Stonewall and other organisations.  Today people are supported if they are victims of homophobic crimes, but I remember years ago when Matthew was beaten up in Trafalgar Square. He called for a passing policeman – who did just that: passed by without stopping to help. It’s still not the easiest life.