Wall Street Journal - July 9, 2004
Joanna Slater, joanna.slater@wsj.com

The reality was more frightening. Mr. Kumar had died of AIDS; and before long, Ms. Krishnan and two of her children would test positive for HIV, the virus that causes AIDS. "I knew the intensity of the stigma," Ms. Krishnan says of her decision to hide the truth. "I was scared for my children."

Those fears were justified. A nurse at the hospital had a relative in the town and slowly the news started to spread. Neighbors stopped visiting. Ms. Krishnan's 9-year-old daughter, Akshara, and 6-year-old son, Anandakrishnan, were shunned by children, including cousins who used to play with them.

More than one person told Ms. Krishnan it would be better for everyone if she moved elsewhere. The final blow came when both her children were denied entry into local schools.

Such treatment isn't uncommon. As India attempts to stem a potentially disastrous AIDS epidemic, the pervasive stigma attached to the disease remains a huge challenge in combating its spread. The discrimination faced by people with HIV is a compelling reason for them to stay silent about their condition, to avoid seeking information or, like Ms. Krishnan, to dissemble.

With more than four million people living with HIV or AIDS, India has the second-largest number of cases of the disease in the world, second only to South Africa. Experts say India is at a critical point in tackling the epidemic and that a huge prevention effort is necessary to contain its spread. At the same time, ignorance about how the disease is spread remains rife.

The tale of HIV-positive children like Akshara and Anandakrishnan is a case in point. Despite living in Kerala, India's most literate and best-educated state, they continue to face a wall of fear from parents and teachers -- and they are the lucky ones, say experts and activists, because their cases have caught the attention of sympathetic nongovernmental organizations. Elsewhere, the situation is much worse. A recent study of people living with HIV in four Indian states sponsored by the International Labor Organization found that as many as 70% had experienced some form of discrimination.

The cases in Kerala demonstrate just how tenacious that stigma can be. Home to approximately 100,000 people living with HIV/AIDS, Kerala ranks highest among all states in terms of awareness of the disease. But awareness isn't necessarily accompanied by accurate knowledge or tolerance.

M.N. Gunavardhanan, the head of the state's AIDS-prevention office, says he was surprised at the attitudes even among elected officials. When a delegation from Kerala went to New Delhi for the first-ever national forum on the disease last year, he recalls, a local politician saw several HIV-positive activists serving themselves lunch from a buffet and refused to eat the same food.

At Anandakrishnan's kindergarten last year, all the other children stopped coming for six months to protest his presence. Eventually, he was kicked out. Ms. Krishnan has tried repeatedly to re-enter Akshara in the government primary school in Kottiyur, only to be told by school officials that it wasn't possible.

"People used to say, 'Why give them education? They're not going to live long,' " says Ms. Krishnan, her voice breaking. "I never wanted to create trouble for others; I just want the chance for my kids to study."

Rejected by her in-laws and facing daily hostility from neighbors, Ms. Krishnan, now 30 years old, says she began to despair and considered suicide. Hope came in the form of a nongovernmental organization called Navajyothi, which heard about her situation, provided her with a livelihood educating people about AIDS and offered to help get her children in school.

But Akshara hasn't been in school for a year. C.P. Girija, the headmistress of the local primary school, pleads helplessness when it comes to getting Akshara back in class, saying other parents have warned they would withdraw their children. Government health experts have come to the school to educate teachers and parents about HIV, to no avail.

The Lawyer's Collective, a group in Bombay providing free legal services to poor clients, is preparing national legislation that would tackle discrimination against people with HIV/AIDS in education, employment, and health care. "We want to bring the disease to the fore, and then we can treat it better," says Vivek Divan, project coordinator at the HIV/AIDS unit of the collective.

For Ms. Krishnan, that can't come too soon. Last month, the parents' association at the local school again refused to approve Akshara's admission. She and Navajyothi are considering legal action. The law is on their side -- Kerala has outlawed discrimination against HIV-positive children in schools -- but the larger battle to change the attitudes of parents and teachers has only just begun.

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