The Children Left Behind

Imagine you are a 12-year-old boy. You live in India, on the outskirts of a town called Vijayawada. Your name is Yesu Babu.

Your home is a tiny two-room concrete block, approximately 200 square feet, in a slum known as the Vambay Colony. Imagine that you share this small home with your grandmother, Durgamma, and your 9-year-old brother. You live with your grandmother because your parents 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, who never expected to be raising two more children at this age.

Soon you learn that although you are HIV-negative, your young brother is HIV-positive. He begins to grow ill. He battles many infections. He cries in the night when he’s sick and calls for his mother.

Almost crippled with severe joint pain, your grandmother can barely walk and cannot physically work; even if she could, someone has to care for your brother. There is no one else to provide an income for this new family that has formed. So you let your brother go to school, although for what future is painfully unclear, while you go to work. You leave home for a week at a time to travel for migrant construction or agricultural jobs. You are paid 30 to 50 rupees per 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.

This is your new normal. Imagine.

I met Yesu’s family when I travelled to the state of Andhra Pradesh in March 2007, on my third trip to India. Abraham Mutluri, Programme Coordinator with the women’s and children’s development organization Vasavya Mahila Mandali (VMM), explained how Vambay Colony sprung up two and a half years ago, almost overnight, as thousands of people from the surrounding rural villages migrated to Vijayawada for work and began setting up camps along the canals. 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.

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 dirty ball, two or three jacks. The homes were dark and poorly ventilated, no more than concrete lockers, each an arm’s length from the next. In front of each doorway ran an open sewer which one must step over to enter the house. The flies were incredible, swarms of them everywhere, an incessant presence. Bowls of food and open bags of grain sat around, with no refrigeration and very little storage space. I thought of the flies and how they must land on both the sewers and the food.

Sitting together in her small house, Grandmother Durgamma spoke to me about her life. “It is very hard taking care of my two grandchildren. I have leg pains, I cannot run with them. I want to take care of them but it is hard. I am only one. I am always thinking about their futures. If something happens to me, when I die, what will happen to them? I don’t need anything for myself. I am living only for my grandsons.”

Her plight is an all-too-common legacy of India’s exploding AIDS epidemic and a familiar story in Andhra Pradesh, the epicentre of the crisis with the highest infection rates in the country. The pandemic has created a secondary human rights crisis – the orphaning of children on a massive scale. UNAIDS reports, “Orphaning remains the most visible, extensive, and measurable impact of AIDS on children.” The leading cause of death worldwide for people ages 15 to 49 – the very ages at which many people are raising families – AIDS is an epidemic that wipes out the middle-aged population, leaving the very old to take care of the very young – as well as the other way around.  As it devastates this generation, it leaves hundreds of thousands of children in its wake.

The trend of grandparents raising grandchildren has become so prevalent – as many as 40% of these orphans live with their grandparents – that VMM and similar organizations have started what they call “Granny 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 10 to 15 members who meet once a month, with social time and education about various topics. At one meeting, they might learn about HIV medications and treatment; at another, the subject might be nutrition. The time is also used to make friendships, share problems, and offer solutions.

“Sometimes we play games or sing,” Durgamma told me about her club. “We have become friends, like sisters, and we support each other. We are older people who have watched our children die. We share our joys and our sorrows.”

Ramulamma is another active granny club member in Vambay Colony. She lives with her granddaughter and great-grandson Krishna, who is HIV-positive. Krishna was so tiny I would have guessed him to be a boy of four or five years old; when I inquired I was told that he is nine. Krishna’s mother, the breadwinner of the family, was at her job as a hotel maid in Vijayawada the day I visited. She earns 40 rupees per day – less than one U.S. dollar – although it costs her 10 rupees to travel into town and back. They are a family with three generations affected by HIV: Krishna’s father died two years ago, and his grandfather died just the month before my visit, both from AIDS. Krishna and his grandmother gazed at me listlessly as we spoke, both of them with the same vacant, hopeless eyes. In Vambay, it seemed death was not a feared stranger but a constant, familiar companion. Tears were an indulgence these elders had neither the time nor the luxury for. In their daily scrabble for existence they could not afford to keep accounts of regret.

Krishna sat cross-legged on the floor facing me in his khaki shorts and sleeveless red sweater. The boy was so tiny I would have guessed him to be four or five years old; when I inquired I was told that he was nine. His eyes seemed too big for his face and he did not smile, watching me write down his medical history with little interest.

VMM provides doctor care and medicine every month for Krishna, as well as a local physician who is available for immediate needs, but he is not on ART therapy currently because he is not deemed sick enough. In India, CD4 blood count levels must be 200 or below to qualify for ART drugs – the level at which HIV is medically considered to have become full-blown AIDS. Only 7% of HIV-positive people were receiving any Anti-Retroviral Treatment in 2005.  In the United States, ART is started well before this time to prevent AIDS, generally at CD4 levels of 300 to 350.  Krishna continued to have regular blood tests so that ART drug treatment could be started as soon as his condition qualified. His small body was a battleground in which a war was being waged and AIDS was making its slow, inexorable victory.

In spite of their plight Krishna and Yesu are among the lucky children because they have family to live with. For every child fortunate enough to live in a family home there are a thousand more who have nowhere to turn. Those without any kinship ties – or whose families who refuse to take them in because of the stigma of AIDS – often end up in institutional homes, forming child-headed households, or simply on the streets. They are the missing face of AIDS, these children left behind.

Krishna and his grandmother gazed at me listlessly as we spoke, both with the same vacant eyes. In those two pairs of eyes laid a world of despair, devoid of any hopes or dreams. They waited patiently for my next inquiry. Abraham looked at me expectantly. I knew I was supposed to ask more questions, but I could think of no other words. Silence seemed to demand all the space between us. Everything I wanted to know was there in those eyes that stared back at me. The wrecked lives left in the wake of AIDS’ destructive path had faces and stories, and their suffering knew my name. Those eyes will stay with me forever, I suspect.