Freedom from Fear: New book documents survival stories of AIDS orphans

March 5th, 2009 - 10:30 am ICT by IANS  

New Delhi, March 5 (IANS) Nine-year-old Ganesh has no recolletion of his parents. He lost them to AIDS even before his first birthday. Ganesh, who lives in the fishing village of Chilakapeta in Visakhapatnam district, Andhra Pradesh, is HIV positive. His 60-year-old grandmother, Parvathyamma, looks after him.
Parvathyamma, a fishmonger, is illiterate. And her meagre income is barely enough to support the child. Ganesh is on anti-retroviral drugs and requires care. The 60-year-old woman has left it to Lord Jesus, who hangs from a calendar on the wall, to lead the way.

“When Ganesh’s parents died, it became clear that there was no one to look after him except me,” Parvathyamma sighs.

“The most vulnerable in the HIV epidemic are the children - there is nobody to speak for them. For instance, Ganesh in Andhra Pradesh. I travelled to many states to gather stories of survival. Manipur was the most alarming. I came across grandmothers and grandchildren - but no parents. The second generation had been wiped out by AIDS in Manipur. What happens after the grandparents die - who takes care of the children?” asks Patralekha Chatterjee, who wrote the stories that have gone into the book “Hopes Alive: Surviving Hopes and Despair”.

The book has been published by FXB India Suraksha, part of a global non-profit organisation. FXB India Suraksha works to empower AIDS orphans by providing them with skills so that they can earn a living themselves. The book was released in the capital by Vice President M.H. Ansari Monday.

A rough estimate puts the number of AIDS orphans in the country at 45,000. Nearly 20 million children worldwide have been orphaned by AIDS.

Eighty-five year-old Ibemhal is the caretaker of a streetside shrine in the Singjamei area of Manipur. She supports five grandchildren from the money she collects every day. Her son, a drug addict, died of AIDS in 2003. The following year, Ibemphal’s daughter-in-law succumbed to the disease, leaving behind five children in the care of the widowed grandmother.

One of the five children has been diagnosed HIV positive.

Manipur is also beginning to see a generation of young widows - between 20 and 35 - whose husbands have died of AIDS.

“Similarly, we are seeing a generation of orphans. Many families of drug abusers believe that if their sons get married, they will settle down. There is social pressure on addicts living with HIV to marry and settle down. The context is complex,” says Khoi Dinesh of FXB India Suraksha, who was interviewed for the book.

The statistics in Manipur are staggering. With 0.2 percent of India’s population, it has eight percent of the country’s HIV positive people.

“I have tried to find out the ways they cope with the despair. The best survival tales come from the most marginalised children. They live without electricity, roads and have to battle terrorism. They are the real heroes and heroines,” Chatterjee said.

“Some of my friends live with AIDS. There is always something to live for - the book tells you that,” she said.

“HIV/AIDS still has stigmas attached to it,” Countess Albina Du Boisrouvray, president and founder of FXB International, told IANS, explaining the circumstances under which the disease spreads in the country.

“I was in Andhra Pradesh recently, and I found that it was difficult to coax the affected to come out and go to the hospital for tests. Consequently, many cases are not reported.

It is this stigma that we are battling.”

(Madhushree Chatterjee can be contacted at

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