The queer community is abound with stigma against HIV-positive individuals

From bullying to shaming to even extortion, for queer folks battling HIV, the battle starts within the queer community

Reena can still smell the corridor of the testing centre in Ranchi when she received the results in July 2018. It was well after sunset and she remembers the government hospital morphing into a mortuary–akin to something damp and desolate in the air. The attendant nurse plopped the report on her lap like it was her child; it didn’t help that she was alone. 

“It felt like I’d been assigned a death sentence,” says the 29-year-old who works as a marketing manager in Ranchi. “I had zero clue about the way forward, and then wave after wave of shame took over me until I couldn’t breathe, culminating in a panic attack in front of a family of four in that corridor.” 

It has been four years since that gruelling experience and Reena still cannot figure out the source. She had done everything by the book–been careful of the razor blades, stayed away from needles all her life, and always used protection. She doesn’t remember making out with women with bleeding gums, either.

But the real challenge wasn’t how the HIV virus made her feel. It didn’t push her into a dark and lonely place. For the longest time, she doesn’t even remember crying. The hate was from within the community itself, when she thought she should share what she was going through. Instead of being a safe space, she was kept away from the pets of her queer friends, who were worried she’d pass on the virus to them. Furthermore, her partner of five years broke up with her because she did not have the mental bandwidth to process it all. 

The hate within 

In Experiences of HIV stigma among HIV-positive men who have sex with men in Chennai, India, the authors explored the experiences of men-having-sex-with men (MSM) living with HIV in Chennai with HIV stigma. The study found that HIV stigma led to internalised shame, social isolation, and fear of disclosing one's HIV status, thereby impacting their mental health and access to healthcare services.

Another study titled HIV stigma, coping, and psychological distress among transgender women living with HIV in North India explored the relationship between HIV stigma, coping strategies, and psychological distress among transgender women living with HIV in north India. The study found that HIV stigma was associated with higher levels of psychological distress and poor coping strategies among this population. 

In Reena’s case, treatment provided by a New Delhi-based NGO has helped slow down the effects of the virus, making it undetectable but still present. She lives on her own in the Cantonment area of the capital city, away from the claustrophobia of Ranchi. 

According to Rudrani Chhetri, who runs the government-backed Mitr Trust in New Delhi, the stigma within the community for HIV-positive people takes many forms, even resulting in some of them internalising guilt and hate. “Back in the day, there were kothis (those who haven’t had the gender confirmation surgery) who would let the blood flow from their genitals during the gender confirmation surgery, assuming that the virus would flow out of their bodies that way. Many of them died because of excessive blood loss.” 

Chhetri adds that the HIV stigma within the trans community is so severe that it prevents HIV-positive people from accessing care, fearing that they will be seen in such hospitals and care centres. “Usually, all the trans people in a neighbourhood will know each other. They track each other’s movements because it’s a small community. Now, if the HIV-positive person goes to an Antiretroviral therapy (ART) centre, it sets all the tongues wagging in that neighbourhood.”

Acting on a court order in  July 2022, the National AIDS Control Organisation (NACO) initiated the process of eight more ART centres. According to a factsheet released by NACO in August last year, currently, there are more than 2 million people with HIV in the country. The report confirms that testing has increased, too, with a 20-minute self-testing HIV kit to be made available in India by 2030. 

This is so because the sexual element in HIV is hard to get rid of. There is a hierarchy even within the trans community—the ones who go to weddings (seen as demigods), sex workers, and beggars, and all are interconnected. “When someone comes out as HIV-positive, they are seen as sexual beings bringing shame to the community, because of the popular notion that only those who have sex contract HIV.” 

Navigating the stigma 

The first cases of HIV were reported in India in the early 1980s, primarily among commercial sex workers and intravenous drug users. However, as the epidemic spread, it began to affect a broader range of people, including the queer community. Despite the fact that homosexuality was criminalised in India until 2018, the queer community has been active in advocating for HIV prevention, treatment, and care. In the year of 1986, the Government of India established the National AIDS Committee within the Ministry of Health and Family Welfare to address the epidemic in a multi-pronged manner. However, none of these policies took into account the silent discrimination faced by HIV-positive queer individuals within the community, or rather any stigma at all, until September 2018.

The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017, came into force on September 10, 2018, and criminalised discrimination of any form against HIV-positive folks. Apart from prohibiting discrimination while accessing health and civic services or holding office, it also prohibits the isolation or segregation of an HIV-positive person and adds that every HIV-positive person has the right to reside in a shared household and use facilities in a non-discriminatory manner.

Tinesh Chopade, associate advocacy director at Humsafar Trust, tells The Established that it has indeed been a long journey fighting the stigma within and outside the queer community when it comes to those who are HIV-positive. 

“The work started in 1999 when the union government consulted us to design HIV prevention programmes for homosexuals and that is when we developed a gender identity circle to include gay men in HIV prevention models,” he says. “Before that, the HIV programmes were focussed only on female sex workers and those who took drugs. Our model included free HIV testing and condom distribution for gay men. Next, our focus was on-ground interventions at cruising sites as well on online dating platforms where the stigma is the highest.” 

Chopade says that the bullying and stigma on queer dating apps towards HIV-positive people have never been more toxic. Only recently, Humsafar Trust had a case where a closeted, HIV-positive man was blackmailed by a hookup who lulled him into believing that he was a safe space. It didn’t end at just bullying, he even demanded a huge sum of money if the man wanted to keep his HIV status a secret. 

“In such cases, we make them aware of all the legal options and connect them with our queer-friendly lawyers,” says Chopade. “Now, whether they want to file a case is totally up to them but many don’t, fearing victimisation by the cops. This is the reason why we run sensitisation programmes with law enforcement authorities, too.”

An illusion of safety 

The romanticisation of HIV in popular culture and the misrepresentation of queer folks with HIV in our movies troubled Aslam, a 34-year-old software engineer based in Dehradun, the most. In many ways, such representations acted as roadblocks for him to fully understand the many dimensions of the condition and what it does to one’s mind. 

“In Philadelphia (1993), the movie portrays a gay man with AIDS as a victim who is unjustly fired from his job and faces discrimination from his colleagues. While the movie was groundbreaking at the time for addressing issues of homophobia and AIDS, it also reinforces the stereotype of queer folks with HIV as tragic victims,” he says. Meanwhile, in And the Band Played On (1993), queer folks with HIV are portrayed as sexual deviants who spread the disease through their reckless behaviour. It also places blame on the queer community for the spread of the disease, rather than addressing systemic issues that contribute to its spread.

However, the first Indian film to deal with the issue of AIDS, My Brother… Nikhil (2005), directed by Onir, was set in a time when there was hardly any awareness about HIV. As opposed to showcasing its characters as sad and lonely, the film ends on a redeeming note. Onir has gone on record to state that the film is based on real events. 

“It wasn’t written anywhere that the queer community was your safe space,” says Deepak Kashyap, a queer-friendly psychologist. “When COVID-19 first hit, have we forgotten how we treated each other? The stigma around HIV within the queer community has to do with the fear of dying and death and the ignorance around dying. It drastically and dramatically changes your life. Now that we’ve relaxed our understanding of COVID-19, I would hope that’s where we are headed with HIV too.”

Kashyap, a queer man himself, says that when HIV-positive patients come up to him to talk about the discrimination they face within the queer community, the first thing he tells them is to manage their expectations. “They don’t have to feel helpless. When they came out, they slowly found their tribe–connecting with other positives. Now with being both HIV-positive and queer, they have to do it again. More often than not, they are racked with fear that someone will find out. I’m not law-bound to not tell someone but I won’t lie. But if there are a few friends who know it, it helps; you shouldn’t suffer in silence. You have to find your own people who are HIV-positive themselves,” shares Kashyap. 

Also Read: How several Indian queers are still isolated from public spaces

Also Read: Joyland’s trans actor Alina Khan is hopeful for the portrayal of queerness in Pakistani cinema

Also Read: For queer Indians in small towns, marriage is the road to survival