Bhoogaon (Maharashtra): In a smart blue tunic and red ribbons in her hair, 12-year-old Komal’s laughing eyes hide a fear of death that stalks every student in her village school.
Within months or years she could be dead, but while she lives she is fulfilling a dream—of going to school again after she was expelled from her previous one because she was infected with HIV.
“They used to throw water on me and tear up my books,” Komal said as she reminisced about her days at a regular school. “Still, I wanted to go to school, but one day my teacher said don’t come back.”
At Gokul, a school for HIV-infected children in this dusty village north of Mumbai, each student has a heart-wrenching tale of discrimination and suffering.
Common fate: HIV infected children eat lunch at a school for them in Bhoogaon, some 130km from Mumbai. Stigmas and discrimination continue to hound people infected with HIV/AIDS in India, with hospitals turning away patients and regular schools throwing out the affected children.
The disease orphaned all of them, some were thrown out of school for their HIV status or abandoned by families. All got the virus from their mothers.
The school is among only a few across the country run by voluntary groups, where infected children expelled by “normal” schools receive education.
Rights groups and HIV/AIDS workers say conservative India’s fight against the disease is being undermined by ignorance and prejudice. Sufferers are often denied treatment by hospitals, thrown out by families, evicted by landlords or fired.
Children remain the hidden face of this suffering. When a parent is infected, children drop out of school to care for them, or go to work to replace the lost income, until they become orphans, health workers say.
Prejudice is so deep-rooted that the state of Kerala failed to persuade schools to take in two infected children and was forced to bear the cost of their education at home.
Children do not figure on India’s estimate of 2.5 million people infected with HIV, but the government says about 50,000 children below 15 years are infected by the virus every year.
Among the students in Bhoogaon is Ramesh, whose father, his care-giver says, infected his mother because he wanted her to suffer his deadly fate.
All the students are aware of the fatal nature of their ailment. Seven children have died at the school in the past few years.
All of the school’s 53 pupils are HIV positive, but none has AIDS yet and they are receiving expensive antiretroviral treatment.
“When one of us falls sick and is taken to hospital we keep wondering if he or she is going to come back,” says Ramesh.
Some of them remember cremating their parents and then being subjected to torture by their relatives and finally fleeing home.
“Gokul was born out of the social rejection of these children,” says Ujwala Lawate, the school’s managing trustee.
“Some of them were sent from government remand homes, some we picked up from villages and some were brought in by their families.”
The residential school, the size of half a football field, has students ranging from two to 16 years.
“Villagers threatened us. They said our children were a risk,” says Lawate. “In fact they said if our children bit their children they could get AIDS.”
The locals relented after government health workers intervened and promised to keep the children within the confines of the school’s high walls.
Lawate says her school is an effort to provide dignity and purpose to the lives of HIV-infected children, but she has critics as well.
“Instead of separate schools we should fight for equal rights of an HIV/AIDS child,” says Meena Sheshu, whose state-based anti-AIDS group Sangram opposes Lawate’s efforts.
“No child should be thrown out of a school. But a separate school only institutionalizes the stigma and discrimination.”
The government’s stand is ambiguous. It provides financial aid to schools such as Gokul and says no school should turn away any student, but at the same time the government has yet to ban discrimination against those with HIV/AIDS.
Lawate says her critics are ignoring the “practical problems”.
“While we debate what is right and wrong, children are being discriminated against,” she says as groups of smiling students jostle around her, their kaki or aunt.
“What would happen if these 53 children were not here? Maybe they would just be lying sick somewhere by the streets and waiting to die.”