I was brought up at the centre of Gujarati society in Britain. My parents were immigrants who came in the early ‘60s. It was an exciting time. We were part of the Indian National Theatre, connected to the Quit India movement, set up during the British Raj to perform plays which explored being Indian and being independent from the British. I loved theatre. I loved that we had rehearsals at home. I loved that, when my father directed or acted in plays, I’d be selling programmes. I loved it that the biggest Bollywood stars would be opening my father’s plays. I loved being between Barnet and Bombay and being an extra in Bollywood films. As the only son in an Indian family, there was a lot of expectation on me.

My father was violent and I was sensitive, always asking for stories, always inquisitive. I existed as this Indian being, this Gujarati kid, either in smalltown or big-city India, and the British kid, too. I suffered the anxiety of never really fitting in. Nobody saw me. I was invisible. At the same time you lived with fear that you were going to be called a Paki in the street, or somebody would threaten to beat you up.

I didn’t belong anywhere, and I could see the hypocrisy in everything. When I was 16, my emerging sexuality offered a kind of freedom. I read about the Gay Teenage Group in a copy of Gay News I’d bought from a kiosk on Oxford Street. It was only a bus ride away. I stood outside the little hut for an exorbitant amount of time and bought a Coca-Cola just to give me some Dutch courage. Finally I went in. Making that decision changed my life.

I hadn’t had enough love in my life. I wanted to find somebody who would understand life as I did. Of course, it was going to be impossible, because who’s going to understand all the Indian context, all the violence? But you need spaces where people can find people like themselves. Indian society was smart and focused, aimed at being successful. British society at the time was people getting drunk. And then you come to the gay world. It was chaotic! It was the drugs. It was the sex. It was the drink. I used to go to the Black Cap. Imagine somebody who looked like a 12-year old in there. The drag queens took me under their wing. It was exciting, this little secret life I had. Those days were important.

In the Black Cap I was with a guy I was sleeping with. Another man came in in tears. My guy went out with him. I waited for them to come back. He returned without the crying guy.

I said, ‘What’s happened? Where is he?’

‘Something’s happened. He’s not very well.’

I asked, ‘Is it… is it IT?’

I’d seen the Horizon documentary in 1983, which talked about a gay plague in San Francisco, New York, Los Angeles. I was shocked because they had gay men on television. I didn’t take it seriously, but got excited seeing all these gay men on the telly; I’d never really seen that before.

My guy said, ‘Let’s change the subject.

We left the pub to go to a club in Tottenham Court Road and the other man was still sitting outside the Black Cap in tears. I remember looking back at him. I wanted to go up to him and hug him.

My friends said, ‘No, don’t go near him!’

That image stayed with me. I know in retrospect what it was. I don’t know if he died.

All deaths from AIDS were awful. People from the Teenage Group used to disappear and were not spoken about again. In the Black Cap, people would disappear. Drag queens started getting HIV and dying.

I got thrown out of home. I wasn’t hiding aspects of my life. After the Gay Teenage Group I went to the Under 30s Group at King’s Cross. I went to film school at 19 and I’d go to the Black Cap every night. It was a very homophobic climate so there was a lot to fight against. You found your little crowd. I was hanging out at Boy George’s house every weekend in Hampstead. I got to know George Michael at Bolts. We used to meet Derek Jarman for dinners. He had bonfires on Saturday nights one summer in Hampstead Heath. They were chopping down trees so that gay men wouldn’t cruise. Derek didn’t like that very much, so he decided we were going to have bonfire parties. It was wonderful. You’d be smoking joints and there’d be animated conversations and storytelling. People would go off for a little cruise and then come back. No one asked questions. He created this world in which we could all end our loneliness in this situation.

At 21 I won a major award at film school for a film I made with John Hurt. It won film festivals in Europe and America and drew a lot of attention to me. I graduated with distinction and was in the media spotlight.

Just after, I went to a meeting at the London Lighthouse.  I saw it in people’s eyes – the fear. I will never forget the eyes. Friends had been ill and I wanted to get more involved. There was a meeting about talking about HIV/AIDS in the black and south Asian communities. I was asked to make a film, the first about HIV/AIDS in the black community. We couldn’t find anyone to be in the film, so I booked famous actors, took stories and wrote them; made the documentary. The Department of Health gave us the money, with the Black HIV/Aids Network. In 1989 it was an important film. It sold worldwide, won a British Medical Association award and was used by THT for 15 years.  It felt like a way of helping people in terrible, heart-breaking situations.

In my mid-twenties, I fell in love. I didn’t realise he was sleeping with his best friend, whom I also knew. One day I met his friend at his house. He knocked me out and raped me against the smashed glass table. After, he told me he regularly went to Hampstead Heath and didn’t use a condom. ‘So you’re most probably HIV positive now,’ he laughed.

I left his flat and wrote in my diary, just the word ‘positive’. If I was a stronger person, perhaps I might never put myself in that position. We rarely talk about the connectedness of trauma. Three months later, I went for the test and it was positive.
That was the changing point in my life.

I told some people that I trusted, but word reached my father. I was sent to America. I was told my uncle was ill and I had to go immediately. The flight was booked for the same day. But when I got there I was told, ‘You’re here to see an AIDS doctor – a friend of the family, because you’re HIV positive.’ I was absolutely stunned. I had no idea that everyone knew. My private life had become my public life. All my lives came together. It was a new journey after that. Life is full of endings, but full of beginnings. My world became much bigger. I wrote my first play in that period.

Nigel, my boyfriend, died in 1995. John, who I used to date, died the same year. I lost myself. I could only remember the period of trauma. I found it hard to remember anything before the rape. 

I’ve been very ill for a lot of my life. I’ve got inherited heart conditions. I’ve had open heart surgery. I’ve nearly died three times. The last time was in 2016 when I was found unconscious. I was diagnosed with severe complex depression, post-traumatic stress disorder and dissociative disorder. I had a metal box fitted in my chest and I was ill emotionally. In the middle of heart surgeries, I lost my disability benefits. I got letters from my GP, my therapist and my psychiatrist explaining that I needed money to get well. I took it to tribunal. I asked the main charities for help. I was desperate. I couldn’t cope until a friend took charge but to no avail.

That’s why I do what I do. Because we are still not having the conversations of the effects on AIDS and HIV on the individual in terms of mental health and traumatised self.

I still wanted to find magic in life. I had a vision for an AIDS Memorial borne of  the idea of talking about the collective trauma we’ve all been through over the last forty years. AIDS galvanised all of us when we were all dying. The idea of an AIDS Memorial came out of pain. It came out of a desire to bring people together to have share stories and give voice to people; to remember how we collectively came together to overcome so much. So many of us battled prejudices in this country and overcame them.

The concept of the AIDS Memorial is an extraordinary public art piece in central London (and we’re not very good at doing public art in Britain), that belongs to everyone, to keep AIDS in the limelight. It’s the beginning of a new conversation. What is the narrative that we give to that art in the space? What is the journey we’re going to go on from when it’s delivered, to ending AIDS? I didn’t survive AIDS to stop fighting. That’s what the AIDS Memorial is about. We have to take collective responsibility for the job that is not finished. The job started in 1982. The job is to end AIDS, and the stigma surrounding it. I’m part of an exclusive club; we’re still considered outsiders. There’s so much stigma, so much hatred. Until you take control of your own narrative, understand your own narrative, and feel confident about it, you’re going to be ashamed.

I think, ultimately, HIV is a gift. You see things in a way that is so unique. If life is about going through experiences, to understand the existentialist idea of living, then , we’re privileged.

AIDS was the biggest conversation that we had for many, many years. 35 million people have died. Let’s keep on saying that. It’s such a huge number, we can’t even take it into our minds. And 37.9 million people are living with HIV. Therefore, storytelling is important. I’m a film maker, an artist, a playwright. We talk about life. It’s not only the individual experiences of AIDS and everything that people went through, but something within the history of the world that’s been reframed. AIDS changed the world.