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.

In India, nearly two million children have lost their parents to AIDS, making it the country with the most AIDS orphans in the world; and their numbers are expected to double within five years. Like sub-Saharan Africa in the last decade, India is on the cusp of a burgeoning AIDS pandemic – one that will disproportionately affect its children. The disease is silently spreading and reaching critical proportions. The sheer size of India´s population – more than one billion – makes a widespread AIDS pandemic almost unimaginable.

These statistics are shocking to most of us in the United States, where widely available antiretroviral therapy has slowed the progression of HIV and contributed to a dramatic decline in mortality. It´s easy to forget that every single day, almost three times as many people die of AIDS in developing countries as died in the World Trade Center on 9/11. A common misperception of the western world is that the AIDS epidemic is waning, when nothing could be further from the truth. Every day brings 15,000 new infections – and one in four of those is Indian. Yet no disaster is declared. These people endure a silent disaster every day.

I met Yesu´s family when I traveled to the state of Andhra Pradesh in March 2007. Abraham Mutluri, Programme Coordinator with the non-profit 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.

Dusty, narrow lanes wound between concrete bunkers perhaps ten feet wide that lined the dirt roads without a break. Some of these homes had ladders propped in front of them, evidence that residents were attempting to expand their miniscule living quarters by taking advantage of the flat rooftop space. Overhead electrical wires criss-crossed and hung down haphazardly, trailing the ground in some places. Lines of clothing hung out to dry stretched between buildings, the faded fabrics flapping in the breeze above the weeds. In spots here and there flowers had been planted, small circles of hope where yellow marigolds and orange gladiolas fought for space in the rocky earth.

The car was parked and we got out, Abraham leading me to Yesu´s home. The people were far less interested in this foreign visitor than anywhere else I had been in India, giving me no more than a cursory glance. They seemed too preoccupied with chores and tasks at hand, or simply too tired to care. The place was eerily quiet, no music or chattering, no cars beeping by.

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.

We ducked through a piece of material strung across the front door of a house. It was dark inside, with two small beds pushed together in a T formation. A two-burner electric hotplate provided the only kitchen. Cooking utensils and clothing lined open shelves above one bed. On the other Yesu´s little brother Venugopal laid curled up in a tight ball. Grandmother Durgamma invited me to sit on a red wooden stool with a gesture of her hand, and she crouched down next to me on the floor, her purple sari trailing in the dust that covered the concrete. Her face was deeply lined, the large gold ring in her nose flashing in contrast to the dark skin around it.

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." She held her fingertips to her forehead and silver hair as she spoke. Her hands were like delicate parchment paper, dry and seemingly capable of flaking away at the slightest touch.

"I am always thinking about their futures," she continued. "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." It was the same question in my mind as I glanced at the listless form of Venugopal, who made barely a lump on the bed next to me. Their situation seemed so tenuous, their survival entirely dependent on this hobbling old woman and a twelve-year-old boy.

The family´s plight was an all-too-common legacy of India´s exploding AIDS epidemic and a familiar story in Andhra Pradesh, the epicenter 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. 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. They are the missing face of AIDS, these children left behind.

As I talked with Durgamma and other families in Vambay also destroyed by AIDS, I struggled to make sense of it, because it made no sense. How could this disease be a treatable, manageable illness for some and a death sentence for others? What needed to be done for Yesu and his HIV-positive brother was so simple. In other places of the world treatments were readily available and children did not lay in beds inside concrete lockers, wracked with AIDS. In a world where two different treatment regimens were available depending on wealth and geography, in which AIDS deaths had drastically fallen in western nations at the same time they were exploding in African and Asian countries, these dead parents seemed expendable.

They had not been expendable to Yesu and Venugopal. A simple regimen of medicine and proper nutrition, an incredibly small amount of money, and lives in Vambay could be vastly different. It wouldn´t take much, it was not an impossible or hopeless situation…but for those families, it might as well be, for these things were as out of reach as diamonds. And so they died, one at a time, while their children and elderly were left to take care of one another – including the sons and daughters who had inherited HIV from their parents in a wholly unnecessary legacy of destruction.

Venugopal 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. The wrecked lives left in the wake of AIDS´ destructive path had faces and stories, and their suffering knew my name. Everything I wanted to know was there in those eyes that stared back at me.