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HIV+ Children: ‘Don’t Separate Us from Our Parents’

HIV+ Children: ‘Don’t Separate Us from Our Parents’

Photo: Girls’ drawings adorn the walls of their home (Vítor da Silva for StoriesAsia)

A family that parents neglected and abused HIV+ children says they might lose their private shelter for not paying a bribe to officials

A few meters away from the shelter home in the central state of Chhattisgarh, voices of playful children can be heard. The cackles of laughter and joy of camaraderie spoke of a home with free and happy children.

As I reached the doorstep, a 15-year-old girl called out, “Mummy, koi aaya hai!” (Mummy, someone is here!) Rita Thakkar, whom the girls call mother, came and welcomed me inside. On the porch, seven or eight girls sat together, quilling. Every now and then, one of them would run up to Rita and show off the artwork that they had created.

Rita and her husband Sanjeev took me on a tour of their home. Two empty dormitories indicated that all the children were out playing. In the dining hall, a TV was on for a couple of girls. On seeing Sanjeev, they ran to him, screaming, “Papa!” It did not matter that Sanjeev and Rita were not the girls’ birth parents. The children had found their family, their home and a place of love, which every child needs to grow healthy.   

Battling nervousness and anxiety to recall past experiences with stigma associated with HIV (Vítor da Silva for StoriesAsia)

“We really like it here.” *Unnati, a 17-year-old, explained, “My sister, my late younger brother and I used to live with my maasi (mother’s sister). She was mean towards me. She would hit me a lot. When my mother was alive, they would keep us separately in a room. After she passed away, the beatings from my relatives came down harder. My older sister, brother and I were tied up and locked in a toilet by our relatives after our mother passed away.”

Unnati’s relatives had discovered that they were HIV positive and wanted to keep the girls away from themselves. “They would pass food to us through the gap between the toilet door and the floor. They kept saying that since we have HIV, they would get it too,” she said.

The family of the girls rejected them for being HIV positive, and when her brother passed away, Unnati and her sister were sent into a government-run shelter in Raipur. “At the shelter we were also discriminated against and not given proper food after they realised that we were HIV positive,” Unnati continued. “The people there felt that they would get HIV even if they talked to us, so they never spoke to us,” she lamented. Despite being socially excluded because of the fear of HIV in the government shelter, they were still physically abused until the official in-charge of the shelter sent them to where they live now.

Barbed wire on the walls of the balcony provides added protection for the children (Vítor da Silva for StoriesAsia)

The State is supposed to provide shelter to every human being under their protection, which includes the vulnerable sections of society. The government-run shelter refused to take appropriate care of the two girls and sent them to this private facility.

This home now is where children like Unnati have found a family. “We have found what we did not have at our own homes,” one of the children said when I asked them how life had been different for them since they moved to this shelter.

Persistent Stigma

Outside the home, though, they still face the stigma attached to being HIV positive every now and then. For instance, Rita told me, “We took one of the girls to the hospital since she had a high fever. The doctor came, saw the ART (Antiretroviral Therapy) card and refused to check her temperature. He prescribed medicines without checking the temperature.” In another instance, one of the children was kept in the TB ward in the hospital. Sanjeev had to fight with the hospital authorities to get her shifted to a general ward.

“Doctors refused to give the children injections, so one of our staff members had to learn how to give injections,” Sanjeev said.

This endeavour is not free of risks. “A couple of times, our staff member pricked herself with a used needle because of the rudimentary training and had to be taken to the hospital.” For six months until she recovered, this staff member had to make trips to the hospital with her own ART card.

Despite the many challenges, Sanjeev and Rita have been able to care for the children and provide them with a healthy atmosphere for their childhood.

Children look on as a girl explains how to make an origami rose (Vítor da Silva for StoriesAsia)

Sanjeev’s Childhood

But, who is Sanjeev and how did he get to manage a home for HIV positive children?

Sanjeev has had to shift the shelter from one house to another because when neighbours got to know that the girls living there were HIV positive, they asked him to leave, saying that the girls could no longer stay in that neighbourhood. Sanjeev, who is no stranger to a troubled childhood, has managed to maneuver all these hurdles.

After his parents’ divorce, Sanjeev was raised by his father in poverty. He grew up a neglected child. When he was a teenager, his father managed to get a house, but their neighbours looked down upon them because they couldn’t afford furniture for that house.

“In that young age, I concluded that money was everything. By the time I was 17, I had a house of my own since I did not want to live with either my mother or my father,” Sanjeev shared.

On his 18th birthday, he realised that life had no meaning as he was alone. “As I sat by the road a few days later, still pondering over my purpose in life, I saw a child picking up bits of plastic to sell,” he said. “The clothes on that child and his lack of cleanliness reminded me of myself when I was younger.” That’s when Sanjeev decided that he wanted to help underprivileged and neglected children. All of this led him and Rita to start a shelter home for HIV positive girls who were either orphans, or had been abandoned by their families and the government.

Funding for this home came from abroad. International organisations and individuals supported the shelter. With these funds, Sanjeev and Rita are able to send the children to private schools for education, while ensuring that they get the diet and nutrition they need.

Every morning and evening, each child is given a glass of milk with almonds to improve their immune system. There are two cupboards in the office that are dedicated to medicines for the children and basic first aid facilities. With the adequate health care, attention and respect they receive in this shelter home, the girls’ future seems brighter.

A skipping rope is one of the many things that the HIV positive children use for play (Vítor da Silva for StoriesAsia)

‘Not Without a Bribe’

All of this would have been for a happy ending if not for dying of international funds.

In 2018, Sanjeev had been informed that the people who provided for a big part of their budget would not be able to continue funding the shelter beyond 2019. Sanjeev and Rita started running around to find other sources to raise the money.

The couple approached the Ministry of Women and Child Development and the Child Welfare Committee in Chhattisgarh. The government agreed to help them, but they had a condition. “They asked for bribes of 30% of our budget,” said Sanjeev. Out of this, 20% was supposed to go to the district administration and 10% to the state administration.

Based on the calculations that Sanjeev did, if they were to fulfil the payment of this bribe, each child would be left with 2,200 rupees a month after paying the staff’s salary. This amount is not near enough to pay for children’s essential medicines, food, school fee and other needs.

Sanjeev Thakkar looks at the official letters that he has recieved (Vítor da Silva for StoriesAsia)

StoriesAsia could not verify the couple’s allegation that officials asked for a bribe.

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Visits from authorities further stigmatized the children, making them uncomfortable. “In front of the kids, the authorities have asked whether they would contract HIV if they drank the water in our home,” said Sanjeev. The stigma that the children thought they had successfully escaped came rushing back. “Not once did the authorities sit down with the children to get to know their stories or find out how they were doing here. Instead, they asked the children what the full form of AIDS was,” he said.

Sanjeev said he tried to compromise with the government. “I asked them to reduce the bribe amount to 7% of the budget but they refused,” he told me. The many visits that were conducted resulted in a cancellation of the license of this shelter. One of the reasons cited in a letter was:

“There is no oven.”

My visit to the shelter revealed that there was a microwave in the kitchen which the kids used, besides all other commodities that, in my estimation, exceeded the basic requirements of a shelter, such as arts and crafts materials, a TV and space for them to play.

“We have been raising the children just as we raise our own daughters,” he explained. As parents, Sanjeev and Rita try to fulfill their basic needs as best as possible. They also celebrate birthdays together.

These children demand things from the couple just as they would in a healthy family. How would they fulfill all the needs of a child within 2,200 rupees?

With the threat of closure looming large over this shelter, the children could lose all that they have been getting in this home.

If the shelter does close down, the children will be sent to government homes – the same places that they came from. They will encounter the very same discrimination and disgust they experienced before moving to this home. Even if they were sent to their relatives, they will be met with the same beatings that they thought they had left behind for good.

The girls have only one thing to say, “We have learnt so many good things here. Please don’t send us away from our parents. We have found the love of so many sisters, all these are things we didn’t have before.”

As I left the center, the children along with their parents came rushing to the gate, happily waving to say goodbye, just as any family would do for a guest.

A girl shows shows off an origami rose made by her (Vítor da Silva for StoriesAsia)

*Names have been changed to protect identity.

StoriesAsia, a collective of independent journalists from 16 South Asian and Southeast Asian countries, seeks to replace the present-day parade of faceless numbers with humanising narrative nonfiction – a largely ignored journalistic genre in the region.

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