A young man who died 25 years ago was India’s first HIV/AIDS activist; his life and death played a crucial part in the movements for the rights of HIV patients and LGBTQ rights

Mumbai: In May 1992, a young man died in a Bombay hospital. His name was Dominic D’Souza, and he had once lived a reasonably ordinary life in Goa: he had a job with the World Wide Fund for Nature, was part of a theatre group.

Then, in 1989, he was incarcerated. His ‘crime’ was that he had been diagnosed HIV+; he was Goa’s ‘patient zero.’ In the next three years, before he contracted AIDS and succumbed to the disease, Mr. D’Souza touched many lives.

Dominic’s fight

In 1987, amidst the worldwide panic about the Human Immunodeficiency Virus, Goa’s government passed the Goa Public Health (Amendment) Act, which allowed isolation and deportation of HIV+ people. The virus was seen as ‘foreign’, and the government felt the state was vulnerable because of its large number of tourists.

In 1989, Mr. D’Souza, a regular donor, had donated blood. A little later, he heard that the police wanted to contact him. He went in to the police station, where he was handcuffed and taken to a hospital, where he was shown a file with his name and the word AIDS written next to it. That is how he found out he was HIV+. He was confined in a TB sanatorium, under guard.

Mr. D’Souza’s mother, a nurse, filed a case challenging the law on the grounds of basic human rights. The family hired a young Bombay lawyer already making a name for himself with an organisation called Lawyer’s Collective, Anand Grover.

The rights movement

Many of the important advances for the rights of people living with HIV in India can be traced to Mr. Grover’s work: treatment access, his work with the UN AIDS rapporteur, and later as the lead counsel in the case against Section 377 filed by the Naz Foundation.

Mr. Grover says that it all started with meeting Mr. D’Souza. “I was asked by Dr. I.S. Gilada from the Indian Health Organisation, who was very active on HIV and brought the issue on the Indian agenda, to appear in the case which was already filed.” While they lost the case, Mr. D’Souza was eventually released. “Dominic and I not only became good friends but together worked to oppose the adopting of the Goa Public Health Act nationally by the Central government.”

Mr. D’Souza subsequently left his job — he had been ‘encouraged’ to take voluntary retirement — and devoted his time to creating Positive People, a self-help group for people with HIV/AIDS.

In 1992, Mr. Grover remembers, Mr. D’Souza had been admitted to Breach Candy Hospital in Mumbai, and he rushed to visit him. “The handsome, sharp-featured young man was now skin and bones. There was no triple-combination Anti Retroviral Treatment (ART) then; HIV meant a death sentence without any reprieve. It was only a question of time.”

At that meeting, Mr. D’Souza kept asking Mr. Grover what they were doing in terms of legal work and HIV work; he asked whether he would continue to do HIV cases. “Without batting an eyelid and without thinking, I answered in the affirmative. I did not realise the implications of my answer. In fact, Dominic had extracted a promise from me.”

Mr. D’Souza died shortly after that.

“In the next five years I became obsessed with HIV,” Mr. Grover says. “I thought, talked, and walked HIV. People thought I had gone crazy. Until the big victory we won in the MX v ZY case in the Bombay High Court, which put the Lawyers Collective on the map. Gay men got to know that we were active on HIV and started coming to us. That led to the realisation of repealing or striking down Section 377 [the section of the Indian Penal Code, which criminalises homosexuality] and working with other marginalised communities, sex workers and drug users.”

Though Section 377 has extensive media coverage through high profile Supreme Court cases, treatment for HIV+ patients is still a health concern, and one that receives only intermittent visibility.

“We have come a long way from the day Dominic passed away,” Mr. Grover says. “The success has been that HIV is now a treatable ailment with ART triple combination therapy. Most importantly the success in HIV was defined by the involving the affected communities in the response.” He points out, though, that the challenges are not only the complacency that has set in, but also in going back to the old ways, with decisions taken by ‘experts’ without involving the communities affected.

A story that inspired

In the early nineties, the filmmaker Onir (he was born Anirban Dhar, but uses only one name now) was working on a documentary about Mr. D’Souza. The story stayed with him afterwards, and inspired him to write a movie he made more than ten years later, in 2005, My Brother… Nikhil.

The film dealt not just with HIV but also with homosexuality, topics hard to discuss at the time in India. “Many people who are in their twenties now and may want to see the film were ten years old or in their early teens then,” Mr. Onir says. “This a chance for [them] to see it, because some of the issues, the discrimination and the problems that people face, are still relevant. In 2005 the film was considered ahead of its time, so I’m interested to see how people seeing it for the first time receive it, to see how much times have changed.”

A deep legacy

Today, the anniversary of the day Mr. D’Souza died, Gay Bombay, an informal group that aims to create safe spaces for men romantically and sexually attracted to men, will celebrate his legacy with an event at G5a, in Laxmi Mills, near Mahalakshmi station. It will feature Dominic’s Dream, a short film by Sopan Muller about his legacy in Goa, and a screening of My Brother… Nikhil. Anand Grover and Onir will speak about what Dominic’s story meant to them and the movement it led to.

“We are still fighting the battle against Section 377, and the battle against HIV is still far from won,” says a release from Gay Bombay. “We have had progress and big setbacks – the biggest of all in the Supreme Court in 2013. But we are no longer in a world where a young man could be locked up just for being HIV+.”