Society On Universal Children’s Day, Esther Elias speaks to HIV-positive children and their caretakers to get an insight into their lives
When Ram was brought to Assisi Snehalaya, a home for HIV-positive children and adults, he weighed two kilos and was given two weeks to live. Abandoned on the pavement outside Government Hospital, he seemed all but dead. A senior HIV consultant sent him to Assisi for two weeks of dignity before death. Today, Ram is a mischievous Class IV student. He is also one among Coimbatore’s 300 odd children living with HIV/AIDS — a meagre portion of India’s 70,000.
For Ram, and the 35 other children at Assisi, their days are strikingly similar to the average child — wake up in the morning for prayers, get ready and run off to school, and return in the evening for games, study and sleep. Except, their breakfast and dinner are accompanied by a handful of antiretroviral therapy (ART) tablets and every alternate Saturday is ‘Hospital Day’. “We try and mainstream the children as much as possible and Government schools nearby have been supportive. In the near future, if a cure is found for AIDS, these children should be at par with their peers,” says director of Assisi, Fr. Ferdinand Melappilly.
Like all children, not everyone at Assisi is enthusiastic about an education and the boys are more rebellious than the girls. “Some say they’d rather look after the fields and cows instead of study but everyone finishes school,” says Fr. Ferdinand. Ten years ago, medicine predicted that children born with HIV wouldn’t cross pre-school but today 20-year-olds such as Meera and Amrit have completed degrees and are looking for jobs.
“Death of children born with HIV is considerably reduced today because when medication is begun early enough, life expectancy is extended. But, will society accept this young generation without judgement?” asks Kezevino Aram, paediatrician and director of Shanti Ashram, which runs SUDAR, a community-based programme for 63 HIV-positive children and teenagers.
For children like Tulsi, running around with fresh mehandi on one palm, their understanding of the disease limits their psychological reaction to it. Some wear it like a degree: “I’m so-and-so and I’m HIV positive.” Others are like Class 3 student Harshad, who believes he’s taking tablets to keep his grandmother company. The sides-effects of these medicines include mild hyperactivity, anaemia and skin allergies but it’s infectious diseases such as diarrhoea, fever and tuberculosis, preventable through sufficient nutrition and hygiene, that caretakers worry about. “However, our biggest challenge today is of informed disclosure. By Class IX, children have learnt about HIV in school, so they experience immense shock when they discover they’re positive themselves,” says G. Vijayaragavan, Youth Leadership Head at Shanti Ashram.
Coming to terms
Some react by withdrawing from society, others question whether they’re paying for their parents’ sins and resentment develops. “There are adolescents whose parents are near death but they won’t visit them,” says Fr Ferdinand. Many also have to deal with the loss of one or both HIV-positive parents. Forty-six of SUDAR’s beneficiaries, for instance, are from single-parent homes and eight are grandmother-headed. Moreover, their questions aren’t just about life expectancy or the effects of HIV/AIDS, rather about their chances of dating, finding love and getting married. They also fear losing friends who discover they are positive. “We lack trained professionals who can befriend and help these teenagers come to terms with the mental turmoil they are going through,” says the senior HIV consultant.
Change for the better
The last decade, however, has seen considerable progress in the approach to HIV/AIDS. Large-scale funded awareness campaigns have resulted in pregnant mother’s being open to take an HIV/AIDS test. “Of the 40 HIV-positive mothers who’ve delivered here in the last three years, not one child has been born positive because the mother was treated through pregnancy,” says the consultant. “Even so, few gynaecologists will deliver positive mothers, few paediatricians will treat positive children and few psychiatrists will counsel positive teenagers. All their problems are blindly attributed to the virus.”
A possible answer lies in stories such as Ramani’s. Born with HIV, she’s today a nurse who sometimes worries whether her positive status will bar her from the medical community, but she wants to work for HIV-positive children nevertheless.
Another answer comes from society as Dr. Kezevino says: “In Tamil, even when one talks of another’s child, we say ‘ namma kuzhandaigal ’. If only we would extend that in practise to HIV-positive children too.”
(Names of the children have been changed)