How free housing for people with HIV segregated them further

Ten years ago, Rashmi M packed up all her belongings and, along with her husband and daughter, left for her new home. She knew it was far from the city, but as the long road stretched further and further on, she grew concerned. When they finally arrived, the area looked deserted. It was like a forest, she recalled. Finally, in the midst of otherwise bare surroundings, she saw a few white buildings jutting out of the ground.

Rashmi, who is now 45 years old, had been allotted a free house under a scheme launched by the Karnataka government to provide housing to people living with HIV. (Rashmi and all the people living with HIV quoted in this story have been identified by pseudonyms.)

She recounted that she had initially expected an independent house, somewhere in Bengaluru. The home she was allotted was a small apartment with only two tiny rooms. But it would do, she thought to herself. Ahead of her was a life devoid of the pressures of paying rent every month. More importantly, it was a place where nobody knew her. No relatives would come knocking and no neighbours would give her contemptuous looks. Her daughter could grow up in a space far away from the taunts of neighbours. It was to be the beginning of a new life.

What she didn’t realise was that her new life would bring with it a host of new troubles, such as difficulty accessing basic facilities, healthcare and work opportunities. Worse, though the new location was supposed to offer reprieve from the discrimination she faced earlier, she soon realised that the colony was dedicated solely to people living with HIV and as a result, it was the target of severe stigma from those who lived around it.

“This area came to be known as the ‘HIV colony,’” she said. “Our problem used to be that we found it difficult to get housing because we were HIV positive. But even after we managed to get housing, we continued to be recognised with that sole identity.”

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The scheme under which Rashmi was allotted a home, known as the Rajiv Gandhi Housing Scheme, was introduced in 2000. The scheme had been launched to provide homes for people from poor socioeconomic backgrounds. In 2009, the government allowed people living with HIV to also apply for homes under the scheme.

This shift in policy was a result of determined and sustained campaigning by several activists and NGOs.

In the mid-2000s, a Bengaluru-based NGO named Milana created a directory of NGOs in the city that were directly or indirectly working with people living with HIV. Over several discussions with these NGOs, the activists of Milana realised that the problem of housing was a crucial one for people with HIV.

“In those days, many women were being thrown out of their homes by their in-laws and accused of infecting their husbands,” said Manjula, a counsellor with Milana, who goes by one name. “Often, after the husband died, the wife and children were homeless. And in some cases, where both parents died, the child was homeless.”

Poornima N, a member of Milana who also has HIV, explained that in some cases, people with HIV “were facing a lot of discrimination from landlords and were struggling to find safe housing”.

The problem was exacerbated by the fact that people with HIV already faced serious financial pressures as a result of their illness. “A person living with HIV has to spend more than the usual amount of money on nutritious food and they also need to spend a lot on hospitals,” Manjula said. She noted that while the anti-retroviral therapy medicines that patients need are provided for free today, up till 2004, patients had to pay for them. “People living with HIV are also prone to other health issues like tuberculosis, pneumonia, herpes, skin diseases, because their immunity is low,” she said. “Who will pay for those treatments?”

She added that “holding a job that pays a meagre amount, and trying to pay rent every month is an unfair expectation from the community”.

To address these and other problems, NGOs working with the community formed the Bangalore HIV AIDS Forum in 2005. The members of the forum agreed that there was a need to help those who were deprived of housing because of the disease. “So we petitioned the government for housing,” Manjula said.

In response, the Karnataka government demanded that the request be submitted by members of the community. Subsequently, people with HIV formed a task force that comprised individuals from different backgrounds and representatives of NGOs.

Around 2009, a member of the community of people with HIV heard about a Dalit group that was planning to place before the government its demands for free housing for members of the Dalit community under the Rajiv Gandhi scheme. “He approached the Dalit leader of the group and explained their own situation,” Poornima N said. “The Dalit leader decided to add in the needs of the HIV community in its demands.”

The government obliged, and along with committing to allocate homes for members of the Dalit community under the scheme, also committed to allocating some homes to people living with HIV.

Three NGOs, Milana, Arunodaya Network of Positive People and Karnataka Network for People Living with HIV, came together to reach out to members of the community and encourage them to apply under the scheme.

In 2009, the government sanctioned 160 homes for the community. Each resident would have to pay Rs 52,000 and would be allowed to stay in their allocated property.

But activists involved in the process and those applying for homes were unaware of how the housing would be allotted to them. “We thought they would all be given homes in different areas across Bengaluru,” Poornima said. “When we found out that all of them were allotted homes together in the same colony, it came as a huge shock to us.”

Further, as the Milana member noted, the community “did not ask for it to be two hours away from the city”.

Jayanthi R, who is in her sixties, broke down in tears as she recalled her initial days at the colony. “I was so angry at my brother for bringing me away from the city to this deserted place,” she said. “There was nobody to talk to and not even a single bus for me to go anywhere if I wanted to.”

On the day of the inauguration of the colony, Rashmi recalled that a senior politician, in a blatant violation of residents’ privacy, announced publicly that the colony was being established for people living with HIV. The announcement was aired on television news channels. “He just told everybody who we were and made us prone to discrimination, all over again,” Rashmi said.

Residents of the colony noted that many HIV-positive patients who were allotted homes had left and were now renting out their houses to people who are not infected.

Those who remain hope that the arrival of people without HIV into the colony will not cost them their privacy. “I don’t know if they know we are HIV positive and choosing to stay here,” said Rashmi. “I hope the word doesn’t spread.”

To reach the colony, you have to travel around 30 km from the centre of Bengaluru, then turn off onto a winding road and follow it for several kilometres, till you reach a statue of BR Ambedkar, at which the tarred road ends. Beyond this lie settlements of Dalit and Muslim communities. Beyond those is the colony of people living with HIV.

The remote location of the colony makes everyday life a struggle for residents. For instance, commuting is a challenge because the nearest bus stop to them is a two-km walk. “There are no street lights,” Pavithra said. “We have to come back home before it gets dark. It is not safe for women to be walking there alone.”

In 2023, for a brief period, the government sanctioned a bus that serviced the area, right up to the colony. “Only for a month or two, and then they stopped it,” said Gowri P, a resident.

When residents have to take an auto to return home, they hesitate because of the stigma attached to the colony. “We will refer to the colony by its official name,” Gowri said. “But the auto driver will say, ‘Call it the HIV colony, only then we will know what you’re talking about.’” She added, “I’ve argued with them about this but they don’t care.” Vasanthi J, another resident, noted that it wasn’t just auto drivers, “even ambulance drivers have said that to me”.

Other basic facilities are also missing. For instance, colony residents have trouble disposing of garbage because garbage collectors refuse to come to their locality. “They asked us for 100 rupees per house for a month,” Rashmi said. “Some people agreed but many people cannot afford that kind of money.”

Further, residents explained that there were no vegetable shops or provision stores close by, nor any government schools or government-run healthcare centres.

Indeed, healthcare was a crucial concern for every resident Scroll spoke to. Those who live with HIV need to take antiretroviral therapy medication once a day – these drugs reduce mortality and morbidity among HIV patients and improve their quality of life. Residents pick up this medicine from the government-run Victoria Hospital, travelling two hours each way to do so every month. The process leaves them drained. “I just come home and collapse,” Rashmi said. “I won’t even be able to move.”

In 2020, during the Covid-19 pandemic, an NGO, with the support of a local Dalit leader, set up a clinic in the colony to serve residents. In 2023, however, funds for the clinic were exhausted, and it was shut – residents have to travel long distances again to seek healthcare.

Rashmi suffers from “buffalo hump”, or the accumulation of fat over the dorso-cervical spine. She underwent surgery in 2022 to remove it, but the condition has recurred, she noted. “I may have to start making frequent trips to the doctor again,” she said, looking worried. Gowri noted that some residents chose to move out of the colony because they needed regular healthcare and wanted to be closer to affordable government facilities.

Even residents who are not HIV-positive struggle because of the remote location of the site, she noted. Her husband, for instance, rides a two-wheeler for two hours every day to reach Bengaluru city, where he sometimes gets painting jobs. He prefers to work in the city because he receives better wages than when he works in localities close to the colony.

These residents, too, suffer for lack of access to healthcare. “A few months ago, he suffered a heart attack and the ambulance took an hour to reach the colony,” Rashmi said.

She added that they had to pay Rs 4,000 for an ambulance from a private hospital because a government ambulance “would not have made it”. Her husband “was admitted for almost two months, but we could not take a break and come back home because it was too far,’ she said. “So we were stuck at the hospital.”

I asked Rashmi if she felt like the government had pushed them to the margins of the city and if she saw this as another attempt to ostracise the community. “There is a possibility that there was no land anywhere else so they gave us this,” she said. “But personally, if you ask me what I feel, then yes. I do believe we’ve been banished here because we are HIV patients.”

On the bright and sunny December morning that I met her, Rashmi was busy giving directions to workers who were renovating her apartment. The apartment opposite hers was vacant and its owners had allowed her to move into it temporarily. “Most of the apartments in this government housing are mostly vacant,” she said. Indeed, the doors of most houses had locks on them.

She explained that many residents had “gone away because it is very difficult to run one’s life when we are so far away from everything”.

Even among the families who stay in the colony, several have sent their children away to live with relatives in the city or stay in hostels because there are no government schools nearby.

Some families also chose to send children away because they worried that they would otherwise grow up with a stigma attached to them. “We cannot spoil our children’s future,” said Gowri. “They need to go to school and get an education and we can’t do that if they lived with us here.”

When I asked the women if they wished they could live with their children, they all said they did. “It is hard for us to be away,” said Gowri. “But we have to ensure they are well educated and don’t suffer like us.”

Residents explained that they sought to safeguard their privacy, even from their own relatives, but that word often got out that people with HIV lived in the colony. “Sometimes we’ll be in an auto with our relatives and the auto driver will announce that it is the ‘HIV colony’ and then end up exposing this to our relatives,” Gowri said. “None of my relatives knew, and after this happened once, they came to know.”

Some residents take significant precautions to ensure their relatives don’t learn of their HIV-positive status. Rashmi explained that even when social workers, NGOs or any other organisations come to the colony to distribute gifts or conduct interactions, she refuses to participate. She fears that photos will be taken and published, and that her relatives will learn of her whereabouts.

Many who were allotted houses in the colony have been forced to shift out because they could not find any jobs nearby. Gowri recounted that when she first moved to the colony, she tried to find work on an agricultural farm close by. “But the minute they found out that we were from the ‘HIV colony’ they stopped us from working there,” she said. “Things have improved slightly since then, but work is still a challenge.”

Working as a domestic worker is not an option either. “Where are the houses that we can work at?” Gowri said. “Nothing is nearby.”

Despite the immense challenges they face, many residents remain grateful for having been provided with homes. “All our people are here, so nobody will talk to us insultingly and we don’t have to be in perpetual fear of not finding a home,” Pavithra said. Before this, Pavithra explained, she lived in a locality known as Beggar’s Colony in Bengaluru, where she faced immense harassment and discrimination.

The importance of housing for people with HIV has been well documented. A 2016 paper that compared variables such as housing status, access to medical care and health outcomes among HIV patients, noted, “Lack of stable, secure, adequate housing is a significant barrier to consistent and appropriate HIV medical care, access and adherence to antiretroviral medications, sustained viral suppression, and risk of forward transmission.”

At the colony, many residents said they drew some comfort from each other’s presence. “We get to share our joys and sorrows,” Pavithra said. “When we lived in the city, we felt lonely and abandoned. Here people have similar lives, so we understand each other.”

They were helped in settling into the colony and forming bonds with each other by regular counselling session conducted by Milana at one of the apartments, which the NGO uses as an office. The sessions focused on several areas, such as physical and mental health, Manjula explained, but their primary aim was to teach residents “self-acceptance”, which eventually helped them take better care of themselves.

At a session on a Tuesday afternoon in December, Manjula reminded the women that people living with HIV needed to ensure that they consumed “double the nutrition” and be “at peace in life” compared to other individuals.

“They may eat nutritious food, and after that they make them walk two-three km to get to the shops and so all their energy is sucked out. So what is the point?” she said.

The proximity to others with HIV also gives residents access to practical information and advice. Rashmi recounted that before she began living at the colony, she knew very little about the disease. “I thought I was going to die,” she said. “Only after I came here did I realise that this disease was not a death sentence. And that people like me can lead long and healthy lives if we take care of our health properly.”

Further, residents noted that living together allowed them to encourage each other to be diligent with their medication. “We check with each other if we’ve eaten and taken our tablets,” Pavithra said. “And if one of us hasn’t, we scold them and urge them to do so.” She added that prior to moving to the colony, some residents “didn’t even know how to take the tablets”, and that interventions from NGOs like Milana were crucial in this regard.

Pavithra pointed out new buildings that were being constructed near the colony, and explained that the government had sanctioned more land for HIV-positive patients in the next site. Though the new colony is also intended exclusively for people living with HIV, the experience of the older colony suggests that with time, it will come to be occupied by others too.

A Milana member noted that in another part of the city, more land had been sanctioned, and that builders had already started constructing houses that would be allotted to people with HIV, as well as to others from poor socioeconomic backgrounds. “For that locality, the government has said this would not be an HIV-positive only area,” she said. “After we alerted the government to the experiences of the people from the colony, they have finally understood the implications of grouping HIV people in the same colony, and are now allowing other eligible families to apply, and not just HIV-positive patients.”

This reporting is made possible with support from Report for the World, an initiative of The GroundTruth Project.