The Missing Face of AIDS

Imagine you are a 12 year old boy. You live on the outskirts of a town called Vijayawada in the state of Andhra Pradesh, India.

Your home is a tiny two-room concrete block, approximately 200 square feet, in a slum known as the Vambay Colony. Imagine that you live in this small home with your grandmother and your 9 year old brother. You live with your grandmother because your parents both died of AIDS – first your father, who brought the infection home, in 2001; then your mother followed in 2004. There was no one left to take care of you and your brother except your elderly grandmother. Almost crippled with severe leg problems, she can barely walk or take care of herself and never expected to be raising two more children at this age, never knowing how she will feed you and constantly worrying about what will happen to the two of you if she dies before you are grown.

Grandmother Durgamma in front
of the home she shares with grandsons

Your mother did not reveal her HIV status until shortly before her death to your grandmother – her mother. Soon after, you learned that although you are HIV-negative, your young brother is HIV-positive. He grows sick. He battles many infections. He cries in the night when he’s ill and calls for his mother.

There is no one else to provide an income for this new family you have formed, so at 12 years old, imagine that you must go to work. Your grandmother pays 200 rupees per month for the house – about five U.S. dollars – and this is a hardship. She has no income and cannot physically work; even if she could, someone has to care for your brother.

So you let your brother go to school, although for what future is painfully unclear, while you leave home for a week at a time to travel for migrant construction or agricultural work. You are paid 30 to 50 rupees a day on a good day – roughly a dollar or less.

You are 12 years old. You know you should be in school. You should have a childhood; but it has been traded in far too soon for adult work and worries, for hardships that no 12 year old should ever have to face. But what can you do? There is no one else. There is no other way. From a normal life with a mother and father, school, a childhood, possibilities – to this previously unimagined reality that is an all-too-common legacy of India’s exploding AIDS epidemic.

This is your new normal. Imagine.


I met this family on March 20, when I traveled to Vambay Colony with Abraham, a social worker with Vasavya Mahila Mandali (VMM). Vambay sprung up two and a half years ago, almost overnight, as thousands of people from the surrounding rural villages migrated to Vijayawada for work, setting up camps along the river. Soon the government built 8,000 of the small concrete boxes like the one Durgamma and her two grandsons live in, right up next to each other in row after endless row.

The homes are dark and poorly ventilated inside, a concrete locker, an arm’s length from the next one. In front of each home runs the open sewer, which you must step over to enter the home. The flies were incredible, swarms of them everywhere, an incessant presence. Bags of grain and bowls of food sat around, with no refrigeration and very little storage space. I thought of the flies and how they must land on both the open sewers and on the food. There seemed no such thing as sanitation, or hygiene, in Vambay. Children squatted by the side of the road to defecate. Other children played with simple things on the front stoops or in the small lanes – a small dirty ball, two or three jacks. I passed one little girl of about 4 or 5, in a yellow dress all by herself, twirling a piece of string around.

Vambay Colony

Keerthi Bollineni of VMM, which focuses on women and children, told me that the national and global response to the HIV/AIDS crisis in India has virtually ignored its impact on children. It is a sentiment which I have heard over and over from every single AIDS organization and activist I talked to. Keerthi explained that the government and international response to AIDS in India has primarily focused on high-risk target groups: the sex trade, the truckers who carry and spread the infection from town to town, drug users. But the epidemic has been spreading so rapidly, and for so long already in India, that the NGOs have known for years that it has long since moved from the high risk groups into the general population. 80% of women who are HIV-positive here are housewives. The ones who are bearing the brunt of what is widely considered the greatest humanitarian crisis of our time are the families and children.

The plight of Durgamma and her 9 and 12 year old grandsons has, distressingly, become an increasingly familiar story in Andhra Pradesh, the epicenter of the Indian AIDS crisis with the country’s highest infection rates. AIDS is an epidemic that wipes out the middle-aged generation, leaving the very old to take care of the very young – as well as the other way around. As AIDS devastates the 16-to-49 year old population, the very ages at which most people are raising families, it leaves hundreds of thousands of children in its wake.

The huge resulting trend of grandparents raising grandchildren has become so prevalent that VMM and other organizations like it have started what they call “Granny’s Clubs.” These are social and educational networks of women (and some men) like Durgamma who are caring for orphaned grandchildren. The granny clubs generally have around 10 members, who meet formally once a month. Each meeting includes education and information on a different topic – at one meeting, it might be about HIV medications and ART (Anti-Retroviral Treatment); at another, the topic might be nutrition and how to cook healthy meals inexpensively. The time is also used to make friendships, share problems, and offer solutions.

Durgamma told me, as Abraham translated, “Sometimes we play games or sing. We are older people who have watched our children die. We share our joys and our sorrows.”

I talk to Durgamma in her home

In spite of their plight, Durgamma’s two grandsons are some of the luckier children, for they have a grandmother to live with. Others without any extended family – or families who refuse to take them in because of the stigma of AIDS – end up in institutional homes or simply on the streets.

They are the missing face of AIDS, these children left behind.

About Shelley Seale

Shelley is a wanderer and student of the world, yoga chick, voracious reader and dog lover. She pounds the keyboard as a freelance writer, author and publication designer, based in Austin, Texas when she isn't traipsing around the globe. Shelley has written for National Geographic, USA Today, The Guardian, The Week, Fodor's, The Telegraph and Texas Monthly, among others. Shelley has performed a catch on the flying trapeze, boarded down a live volcano, and was once robbed by a monkey in India. But she doesn’t know how to whistle.

Posted on March 26, 2007, in AIDS, children, India, orphans, shelley seale and tagged , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. incredible story, Shelley. I love India and will be going back at the end of this year, and while I study yoga there, I feel myself being drawn down the path of seva, selfless service, as you.

    wishing you a peaceful heart….shanti…..

  1. Pingback: Cherlopalem: Face of the Future « The Weight of Silence

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