In the light of the setting sun, the hilltop house looks diffident, almost hiding in its shadows. At Kottiyoor village in Kerala’s Kannur district, nobody would say that about its occupants, Rema, 42, and her children.
Thirteen years ago, two of Rema’s three children, Akshara S Kumar, then 8, and her younger brother Ananthu, 6, had emerged as the face of the battle against stigma and social discrimination that HIV-positive patients often face. Their story was painfully similar to that of Bency and Benson, two HIV-positive orphans who had been thrown out of their school in Kollam in 2003. Together, the two cases had shaken the conscience of a state that realised that it had very little to offer HIV and AIDS patients by way of social and emotional support.
Now, Rema says she is proud her children have “survived the trauma of these years and made their father proud”: Akshara is now a second-year BA student and Ananthu is a first-year BCom student. Rema says she doesn’t want her eldest child, who is doing her post-graduation, to be identified. Ananthu isn’t home today — “he is visiting relatives”, says Rema.
On October 5, the Union Cabinet approved the amended HIV and AIDS (Prevention and Control) Bill, 2014. Once it becomes a law, discriminating against people with HIV or AIDS will lead to a jail term of up to two years, and a maximum penalty of Rs 1 lakh.
Rema says it all began in April 2003, when Shaji, a wall painter, was diagnosed as HIV-positive. “When the doctor informed my husband about the results of his blood test, he collapsed. A nurse from the Pariyaram medical college in Kannur, where he was tested, is from our village. She broke the news and it spread like wildfire,’’ recalls Rema.
“Everyone, including close family members, wanted us to leave the village. Our children were not allowed to play with others. We were not allowed to use the public road. Nobody visited us. Shaji and I would hug our little children and cry all day,” says Rema.
After Shaji’s diagnosis, Rema and her three children were tested for HIV and their worst fears came true: Akshara and Ananthu tested positive.
As the entire village turned against the family, Shaji’s brothers sent him to a destitute home in Kannur. “Seeing his plight at the destitute home, I brought him back to Kottiyoor,’’ says Rema.
But barely three months after the diagnosis, Shaji died. “If society had been kinder, maybe if people had given us emotional and financial help when we really needed it, my husband could have lived for a few more years. He was shattered by the neglect we had to face. During his last days, he kept crying, saying, ‘The lives of my children have been ruined for ever’.”
Soon after Shaji’s death, the focus turned to Akshara and Ananthu. “Villagers wanted us to move out. What pained me was that even the educated spread lies.’’
There was worse to follow. A week after Shaji’s death, Akshara, then a Class 2 student, went to her Kottiyoor lower primary school and Ananthu to his anganwadi, only to face more hostility. “Parents of other children had gathered at Akshara’s school and were angrily shouting that they did not want an HIV-positive girl to sit with their children.’’
Rema says she pleaded with the school authorities and parents to let Akshara in. “I told them that she wouldn’t speak or mingle with anyone. Please let her sit on the back bench. But the parents were adamant.’’
At Ananthu’s anganwadi, too, parents pulled out their children. “For six months, Ananthu was the only child in the anganawadi. He was not allowed to play with any of the toys there.’’
Left with few options, Rema went to Thiruvananthapuram to hold a sit-in in front of the secretariat. Though she got an assurance from then chief minister A K Antony that the children would be allowed to sit in class, when she came back to Kottiyoor, she was greeted with more protests. “Parents said that if the school took in my daughter, their children would quit.’’
After long negotiations, the school agreed to construct a separate classroom and a toilet for Akshara and brought in a teacher from outside the school.
As rights activists and NGOs protested against the discrimination, the government took a tough stand and by the end of 2004, ordered that the children should be allowed to attend regular classes. The parents of other children finally came around and Akshara and Ananthu completed school.
Through all these years, Rema kept the house running with help from NGOs and philanthropists — she continues to get Rs 5,000 a month from a Kochi-based company. There have been other welcome changes these last 13 years: their house, then a small shanty atop the hill, is now a three-room concrete structure; and Shaji’s brothers and their families, who had distanced themselves from Rema and her children, are “now on speaking terms” with them.
Akshara, now a second-year student of BA Psychology at the Wadihuda Institute of Research and Advanced Studies, Kannur, says, “I have learnt to live with discrimination. I told myself that people treated me the way they did because of their ignorance. The government tries its best to educate people about HIV and AIDS. Yet, discrimination persists.’’
Last year, two girls who stayed in the college hostel left when they got to know of Akshara’s HIV-positive status. The institute then asked her to stay out of the hostel and Akshara had no option but to skip classes since the college is eight hours from Kannur.
Akshara, however, decided to fight it out. She posted a video on Facebook, explaining her predicament. The district administration intervened and asked the college authorities to take her back into the hostel. “They allotted me a single room, with an attached bathroom, at the hostel. But I have no complaints. Many of my friends come to my room and use my bathroom. They understand the disease and so, they are not afraid.’’
She is sceptical about the proposed HIV law against discrimination. “We have a strong rape law. But has that brought down sexual assault cases?’’ she asks.
Akshara says her disease has made her “extra-alert to discrimination”. “When I go for a routine blood test and reveal my HIV status, the nurse immediately looks for gloves and wears them,” she says, laughing.
But these are “small troubles”. “I feel blessed. The disease has given me a lot of friends who understand me and my brother.”