You are an elderly woman living on a meager sustenance, on the outskirts of a town called Vijayawada. Your name is Durgamma. Your home is a tiny two-room concrete block, approximately 200 square feet, in a slum known as the Vambay Colony.
You share this small home with your nine and twelve year-old grandsons. You never expected to be raising and providing for children again at this age, but your grandchildren are living with you because their parents died of AIDS first their father, who brought the infection home, in 2001; then their mother your daughter followed in 2004. There was no one left to take care of the young brothers except you.
Soon you learn that your youngest grandson 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, you can barely walk and cannot physically work; even if you could, someone has to care for the sick boy. There is no one to provide an income for this new family that has formed. So your oldest grandson must go to work. He leaves home for weeks at a time to travel for migrant construction or agricultural jobs, paid 30 to 50 rupees per day on a good day.
You know this twelve-year-old child should be in school. Both of your grandchildren should have better childhoods than this, but they have been traded in far too soon for adult work and worries, for hardships that no children should ever have to face. But what can you do? There is no one else. There is no other way.
This is your new normal.
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 anti-retroviral 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 this 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 minuscule 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 Durgamma'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 the youngest grandchild, Venugopal, laid curled up in a tight ball. His older brother, Yesu, was away at work.
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.
* * *
In spite of their hardships, Venugopal and Yesu are among the more fortunate children living with HIV because they have family homes, however meager. Those without kinship ties or whose families refuse to take them in often end up in institutions, forming child-headed households, or simply on the streets. They are the missing face of AIDS, these children left behind.
Before Abraham and I drove out to Vambay Colony I spent a couple of hours at the VMM office in Vijayawada, speaking with Dr. Deeksha Pillarisetty, Medical Director of VMM. The organization focuses primarily on women and children through home-based medical care, support groups, mentoring programs and study/recreation centers.
"They are missing their entire childhoods," Dr. Pillarisetty said of these young orphans. "They go immediately into adulthood at a very young age." Becoming orphaned or sick themselves are not the only ways children are harmed by the epidemic. The impact on their emotional and psychological wellbeing is devastating. "The child-headed households are a particular concern," she continued, estimating that one-fourth of children affected by AIDS live in homes with no adult guardians present. Her eyes and voice filled with intensity, she leaned across the desk and described the trauma these children face alone.
"They are the most common caregivers for sick parents, which impedes their education. Eventually they watch those parents die. And even then, because of the stigma, no one wants to touch them or take care of them." All too often these children must then step into adult roles as guardians of younger siblings or wage-earners to support the remaining family. They may be denied their property and inheritance rights, face discrimination from neighbors, and deal with fears for their own health.
Alarming new evidence by UNAIDS found that orphans and children living outside family settings have a higher risk of exposure to HIV infection due to limited information about prevention, lack of role models and adult supervision, vulnerability to abuse and increased poverty. Girls are especially susceptible because they are more likely to be removed from school to care for sick parents or other family members, and are often the last in the family to receive medical care. Less access to education, sexual abuse and child marriage all place girls at a higher possibility of becoming infected. Loss of family income can push them into the sex trade and lack of control over safe sex, even within marriage, puts them at a disadvantage. Many families marry daughters off at increasingly young ages so the girls will have someone to care for them after parental deaths. Parents also fear the risk of HIV will render their daughters unmarriageable, a finding corroborated by Human Rights Watch.
This disturbing trend has the added effect of creating a lot of very young widows. "I see many girls widowed by the age of eighteen," said Dr. Pillarisetty, relating the story of one girl who was married at the age of thirteen, widowed at fourteen, and is now fifteen years old and living with HIV. Often these widows are blamed for the husband's infection and death, and outcast by his family.
India's crisis is acute in part because the government has done little to protect children affected by HIV/AIDS, and has no provisions for the orphaned. "The national and global response to the HIV/AIDS crisis in India has virtually ignored children," Dr. Pillarisetty said. "The strategy has focused primarily on high-risk target groups: the sex trade, truckers who spread the infection from town to town, and drug users." Eighty percent of AIDS funding goes toward prevention in the high-risk populations, and only twenty percent to caring for those living with HIV.
But the epidemic has been spreading so rapidly and for so many years that it has long since moved from these high-risk groups into the general population. Married women contract the disease from their husbands, who often bring it home from sex workers or other men. The strong cultural taboo against homosexuality means that gay men typically marry and have families but continue sexual activity with other men outside of marriage. One out of every three people infected with HIV is a woman, and eighty percent of these women are housewives. Mother to child transmission is the most common source of infection in children, at a rate of thirty thousand per year.
* * *
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 situationbut 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.
Durgamma and her grandson 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.