NEW YORK, Oct 20 (Reuters Life) - What better way to give a voice to the 2.7 million people in India living with HIV/AIDS than to enlist the country’s top authors to tell their stories?
Whether it is Salman Rushdie writing about the transgender community of Mumbai, Kiran Desai describing the plight of sex workers in Andhra Pradesh or any of the other 14 writers who contributed to “AIDS Sutra: Untold Stories from India,” each presents a portrait of the groups affected by the illness.
“Besides giving the epidemic a human face, it is giving leaders a chance to look at groups that are being hit hardest, and why, and how they are being affected,” said Negar Akhavi, of the Bill & Melinda Gates Foundation, who edited the anthology.
She spoke to Reuters about the inspiration behind the book and the stigma that still surrounds AIDS in India.
Q: Where did the idea for “AIDS Sutra” originate?
A: “After two years (of working with the Gates Foundation India AIDS initiative) I came to the conclusion that the biggest challenge to doing HIV work in India was the stigma and apathy around the epidemic. So it really came from the idea that if people could understand more fully who is being affected by the epidemic, and how and why, then it would change the understanding of the Indian epidemic.”
Q: How did you choose the format for the book?.
A: “We started with a list of what are all the stories we needed told if you fully want to understand the Indian epidemic because it is so marginalized and it is hidden. What are the issues in the communities you need to be accessing? The fun part was really thinking of who could be the authors that could tell these stories in a way that would fit either stylistically or just seemed natural.”
Q: How did you decide which authors would write about which segment of the population the epidemic is hitting most?
A: “I think that was just basically becoming more familiar with their work and kind of guessing what would appeal to them ... We just pitched ideas to them and said ‘Would you spend a week with this community and write this story? Does this interest you?’ In 15 out of 16 cases they liked the story that was pitched to them.”
Q: Is this a bit of a change for the Bill & Melinda Gates Foundation in terms of highlighting something through a book?
A: “I think the way it is not a change fits with the idea that everyone has a role to play -- that some of the issues facing us shouldn’t be left to just governments, that everyone can do something. So in that sense I think it totally fits with our broader mandate. And with the advocacy it fits because it is providing a window to important issues in a way that is accessible for the general population.”
Q: What, for you, were some of the most poignant stories?
A: ”One that was really interesting to me ... is about a doctor whose HIV status was disclosed to the public without his consent. So he didn’t even know his status when it was disclosed.
”The case was taken to court and it was supposed to deal with consumer protection but then it went all the way to the Supreme Court. It became a case about the right of confidentiality, and then the court ruled in favor of the hospital, not in favor of him on the side of confidentiality.
“The side effect was that it suspended the right to marry for all HIV positive individuals. Instead of saying there should be informed consent, it basically denied a fundamental human right. In 2002 the right to marry was restored ... It just shows the amount of stigma that is, and was around it, and that still is.”
Q: What do you hope to accomplish with the book?
A: “Even beyond HIV, I hope that it allows people the opportunity to explore communities or issues that they would otherwise think ‘Oh, I already know this and it doesn’t affect me.'”
Reporting by Patricia Reaney; editing by Paul Casciato