When Heena, in her early twenties, goes back to her South Indian village, her neighbours stare at her as if seeing an apparition. Heena’s message: Do not spiral down to a life of depression, never even think of suicide. Fight the stigma.

A woman with HIV is doubly burdened
A UNAIDS study of Bangalore and Mumbai, capitals of Karnataka and Maharashtra respectively, two high HIV prevalence Indian states found that issues such as inheritance, housing, and care-giving were particularly fraught with problems for women with HIV & AIDS.

When she came to Bangalore, Heena did not know her HIV status. The news, when it came, shattered her. Its follow up was even worse. The health workers at the hospital where she went for tests bluntly asked: "How did you get it?" 

Heena describes how a government hospital refused to terminate her pregnancy before it reached three months despite complications. "The foetus died in my womb," she said.

Discrimination begins at home
Often people do not know what HIV is. The minute they know it is sexually transmitted and incurable, the persecution starts. "In villages, people do not distinguish between HIV and AIDS, the last stage. They treat us as worse than ‘untouchables’," said Anasuya, a widow in her 20s. "We get scared, feeling very, very bad."

"Even after an AIDS patient’s death, people are often scared to touch the body, making last rites a problem," explained Meghna Girish, co-ordinator of Abhaya, an ActionAid India programme for people living with HIV & AIDS.

Children abandoned by infected couples suffer even more. The issue of Aids orphans has yet to receive attention in India and elsewhere in South Asia. "We do not take such infants as we do not have the support system and other children may not like to live with them," said the regional representative of a children’s charity working in Latur, a district of Maharashtra ravaged by an earthquake in 1993.

Discrimination continues in the work place
Several positive women working in garment units or in homes as domestic helps, say they would rather hide their positive status than risk being stigmatized or losing their jobs. "In many places there are compulsory medical check ups. Or when the entire staff goes for regular medical check ups, they conduct HIV tests without their consent," said Jayna Kothari, a lawyer with the Alternative Law Forum, Bangalore.

At first governments saw HIV & AIDS as a public health menace that warranted the isolation of those infected. And in traditional South Asian cultures, where sex is often a taboo word, an initial high-voltage campaign amounted to scare-mongering and contributed to discrimination against those affected by HIV. "Skull-and-crossbones posters contributed to the dreaded image of the disease," said Ashok Rau, executive trustee of the Freedom Foundation, a voluntary group working with positive people.

But of late there has been a trend to broadly interpret law to uphold people’s rights and in India there are now national efforts to formulate leglislation to protect rights. When this legislation becomes law, the most powerful weapon against stigma may well be HIV positive people demanding their rights. And it is brave women such as Heena, who will be leading the way.