Patient zero: legacy of an AIDS warrior
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On 14 May, Gay Bombay, a queer collective based in Mumbai, held an event in honour of Dominic D’Souza, the first Goan detected with the human immunodeficiency virus (HIV).
D’Souza died on 27 May 1992, at age 32, of AIDS-related complications. At a time when AIDS was seen as a gay man’s scourge in the West and a sex-worker’s affliction in India, D’Souza was open about his positive status. He started a non-governmental organization called Positive People—the first in the state. In his will, he wrote that the newspaper announcement of his death should boldly say “I died of AIDS”. On his deathbed, he extracted a promise from a young lawyer to fight cases on the human rights abuses faced by HIV-positive people in India.
It was that promise which eventually led to the drafting of an HIV/AIDS Bill that saw several iterations before being finally passed last month as the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017—the first national HIV law in South Asia, which promised to tackle discrimination against HIV-positive persons. The new Act also says blood cannot be tested without the consent of the person—an indignity D’Souza was subjected to and thousands of positive people have had to undergo.
The Mumbai event brought together several D’Souza supporters, including film-maker Sopan Muller, who screened his documentary film Dominic’s Dream, on the work that Positive People continues to do today; Bollywood film-maker Onir (he uses one name), whose 2005 movie My Brother…Nikhil was based on D’Souza’s remarkable life; and Anand Grover—the young lawyer who made that promise to D’Souza in 1992—whose NGO Lawyers Collective not only drafted the above-mentioned Bill in 2007, but is also fighting a legal battle against Section 377 of the Indian Penal Code, which criminalizes adult consensual same-sex relations.
Onir’s film, which was also screened at the event, has a scene in which Sanjay Suri, who plays the titular Nikhil—swimming champion, beloved brother and son (and partner of Nigel, played by Purab Kohli)—is sitting shirtless on a hospital bench. Around him, nurses and doctors talk within earshot—“Careful! Gloves pehenke haath lagana (Careful! Wear gloves before touching him). Isse jaldi se Bombay bhej dena chahiye, Iss ki wajeh se hum bhi marein kya (We should send him to a Mumbaihospital as soon as possible. Why should we be at risk because of him)?”
This is what actually transpired.
On 14 February 1989, D’Souza, who worked at the World Wildlife Fund, was summoned to the neighbourhood police station of Mapusa. D’Souza, who lived with his mother, Lucy, a retired nurse, and three siblings in Parra, a village in north Goa, left immediately. He didn’t leave a note saying where he was going—he couldn’t have known what was about to happen; no one, not even the policeman who came to summon him, gave him an inkling. At the station, he was handcuffed and taken to Asilo Hospital in Mapusa, where doctors gathered around him. They didn’t touch him but asked him several questions: Did he have sex with prostitutes, was he a homosexual, did he inject drugs? It was only when he saw a nurse pass by holding a file with the words “AIDS” printed on its cover that D’Souza realized that he was HIV-positive.
He was then transferred to an unused tuberculosis sanatorium, a short distance away. There, he would stay for over two months against his will. Indeed, it was because of D’Souza’s incarceration that the Human Immuno Virus, which causes Acquired Immuno Deficiency Syndrome, or AIDS, was written into India’s court records.
Lucy, a friend named Isabel de Santa Rita Vaz, and a few other supporters filed a case in March 1989 with the Goa bench of the Bombay high court challenging his forced hospitalization, though D’Souza’s incarceration was not illegal. In 1987, the Goa Public Health (Amendment) Act had been amended to stipulate that all cases of HIV-positive persons in Goa should be isolated and deported. The presumption was that anyone carrying the virus was a foreigner. The law was wholly unprepared for D’Souza, who was Goan, and thus couldn’t be deported. Lucy’s case—the first legal battle on HIV to be fought in India—attempted to overturn this law.
Around the world, in the 1980s, AIDS became a human rights battleground that often saw governments pitted against patients. After the first deaths in the US were reported in the early years of that decade, the virus spread across the globe. According to World Health Organization (WHO) estimates, over 12 million people had contracted HIV by 1991, and 2.5 million had died. Health officials in countries, including India, sought to counteract the epidemic through punitive measures, even as the then head of WHO’s global programme on AIDS, Jonathan Mann, and health activists pushed for measures that would respect the human rights of patients.
“We knew very little about AIDS then,” says Vaz over the phone from Goa. She knew D’Souza through an amateur theatre group called the Mustard Seed Art Company—she was its director and D’Souza, an enthusiastic member. “We were not really activists, we were Dominic’s friends. Because of Dominic’s problem, we made it our business to know about this. We wrote to friends in other parts of the world, and they sent us legal papers of cases that had gone to court in Canada and the US. These we would give to our lawyers. This was before Anand took up the case.”
Grover took on D’Souza’s case pro bono. On 18 April 1987, the court granted D’Souza interim relief—he was allowed to go home—and in 1989, the state amended the Public Health Act, to make isolation of patients a discretionary act by the state. But for Grover, who went on to become a UN special rapporteur on the right to health from 2008-14, the fight had just begun.
“I was first told about Dominic by Dr (Ishwar Prasad) Gilada, who was one of the first people to warn about India’s impending HIV disaster,” says Grover, in his New Delhi office (Gilada is the founder and secretary of the Mumbai-based People’s Health Organization, which was one of the first NGOs in the country to build an HIV/AIDS awareness and prevention outreach programme). “Before Dominic died, he asked me to promise that I will continue to work on HIV cases. Over the next few years, it was as if Dominic’s ghost had taken me over. I became obsessed with HIV cases,” he adds.
Grover went on to fight several seminal cases for positive persons, including MX v. ZY, in which the court held that a person’s HIV-positive status could not be grounds to deny them a job in a public sector company—provided they are fit for the work and do not pose a substantial risk to their co-workers.
In 2002, an advisory working group set up by the National Aids Control Organization (Naco) approached the Lawyers Collective to draft a Bill. After nationwide consultations with stakeholders and meetings with the Union ministry of health and family welfare, as well as the AIDS control societies of various states, a draft Bill was submitted to Naco in 2006. The Bill was finally tabled in the Rajya Sabha in 2014.
It is not clear, nor is it important, how D’Souza got infected. However, the significance of his activism is this: In the face of tremendous societal prejudice and panic about the epidemic, the young man, his mother and friends, shone the light on the human face of AIDS. Together, they drew attention to why a punitive approach by the law was not only inhuman but also counterproductive, since it only stigmatized the patient further and drove the disease underground—a fact that is now recognized around the world.
By fighting to free her son from incarceration in a sanatorium, Lucy D’Souza made the AIDS battle into one for humaneness, as much as human rights.
India’s first brush with AIDS
While the first few cases of AIDS in the US were detected in San Francisco and New York in 1981, India had its first brush with AIDS in 1986.
Five sex workers, including a 23-year-old woman called Selvi, were arrested for prostitution in Madras (now Chennai). They were taken to the Madras Vigilance Home, a government-run reformatory for women, where blood samples were taken. When these tested positive for HIV, the women were kept illegally in the reformatory, instead of being produced in court for soliciting sex. It was only when journalist Shyamala Nataraj filed a public interest litigation against their imprisonment some years later that they were finally released, in 1990.
In India, HIV came to be associated with sex workers. According to the National Aids Control Organization, the country had more than 2.1 million people with AIDS by 2015. Two-fifths of the total infections were among women, including sex workers and wives who have little negotiating power with husbands who refuse to practise safe sex.