India: Living with HIV/AIDS

It is midmorning in Dindigul, a town in Tamil Nadu, India. There are eight of us with cups of tea, perched on fold-up chairs, crowded around a green metal desk in a sunny room in a cement office building. Outside, cows meander through the yard, prodded by sari-clad women with wispy sticks and strong voices. A battered, angry German Shepard yelps and growls aimlessly as he tugs at his chain. Goats poke nosily into piles of drying chilies, while men doze on charpoys in the yard.

Over three thousand miles away, in Delhi, state ministers and federal government officials are in long, intense meetings. They have come from across the country, sitting with experts and NGO representatives in the muggy, murky air of India's capital city.

At the end of this hot July day, we will all have come to some greater understanding of one of the more significant issues facing India today, one many are loathe to recognize: HIV/AIDS. The minister's meeting in New Delhi is significant because it is one of the first times that the government has officially recognized exactly how significant a problem HIV/AIDS poses to India. According to Nicholas Eberstadt, in 1987, New Delhi announced a National AIDS Control Programme. However, follow-through was uneven, and the government spent more time arguing that outside agencies were overestimating the prevalence of HIV/AIDS in the country. The federal government has granted significant leeway to individual states in dealing with HIV/AIDS, which has resulted in varying levels of interest and ability to deal with the challenge. The severity of the illness, and governmental response, is hardly a revelation to the people around the table with me in Dindrigal. Nor is it likely to shock the many people and agencies across the country who have been involved with HIV/AIDS education and advocacy. In Tamil Nadu, national recognition of the severity of HIV/AIDS, and increased funding to boot, has resulted in a state-level commitment to action.

Since its emergence in the mid-1980s, HIV/AIDS has been a political hot potato. In the US, people who were living with HIV/AIDS were initially stigmatized as the "3 Hs" – homosexuals, hemophiliacs, and Haitians. Over time, stigmas have shifted, labels have been rearranged, but the illness remains bogged down in stigma and misunderstanding, and people living with HIV/AIDS are still more often referred to as "AIDS people" or "AIDS sufferers" than individuals living with a disease.

In India, scientific assessments of the incidence, distribution and control of the disease are limited. Estimates of actual infection rate vary from four million positive Indians to eight million, depending on the source. What we do know, and what my colleagues in Dindrigal say is the case for their clients, are several general trends in transmission. Perhaps most significantly, people across the country are reluctant to discuss the behavior that leads to transmission. As one friend put it, "I won't find out about sex until I'm married. How would I know about transmission for AIDS?".

The association between HIV and homosexuality is no less significant a stigma in India than in North America. As the New Internationalist reported in 2000, police have arrested local HIV/AIDS education and outreach workers in Lucknow who worked with men who have sex with men, accusing them of running "sex dens" while the media spouted the view that "homosexuality is 'alien' to India". The first gay pride celebration in Kolkatta this past August would indicate quite the opposite, but the association is still there: HIV/AIDS is foreign, undesirable, and a punishment for one’s transgressions.

Most transmission in India today appears to be through heterosexual contact, largely through contact with sex workers and commercial truckers. In Dindrigal they add industrial workers and agricultural laborers to their list of high risk groups. This leads to many monogamous women being infected by husbands who have extra-marital sex. Illiteracy and social taboos around discussing sexuality with women leaves them at significant risk for infection, and hard to access by those who would seek to equip them with appropriate information.

In Dindrigal, HIV/AIDS becomes less an "issue" and more a reality as field workers describe what they have witnessed – and continue to witness – in their travels through clients' villages. In one area, a family of four, whose members were all positive, was locked in a cow shed by their extended family. They were found dead several weeks later. While this is a more severe incident, negative stigma associated with an HIV positive status does lead to social neglect, isolation, and occasionally abuse. Some individuals experience self-stigma, or fear of disclosing their status to family, and commit suicide. Marriages can break down and relationships disintegrate if one person is positive and the other isn't. Some run from their community for the sake of survival.

HIV/AIDS also highlights the already difficult circumstances faced by women, particularly in small rural communities. Within the family, if the woman is positive, regardless of who infected whom, she is automatically to blame. When her husband dies, she is often forced from the extended family by her in-laws, often followed by significant property disputes. Her children face discrimination at school, where teachers reject her children for fear they will infect other students through casual contact. Health care institutions won't touch her. When she dies, her children may be left to the streets or orphanages, as the community and family members are often unwilling to adopt them.

Aanganamal lives near Dindrigal, and has been living with AIDS for over seven years. She is supported by my friends in Dindrigal now, but in the past has been reliant solely on her parents. With time and effort, her community has gradually begun to support her, treating her not as untouchable, but one among them. Donations are collected from community members and divided amongst the people living with HIV/AIDS in her area. Aanganamal works in her village at the community toilets, collecting 50 paise per woman, a little income to feed herself and her family.

None of this means she's treated well. "Nobody treats me like a sister," she declares. "Nobody treats me well". Her circumstances present a challenging story. She has three children who are all infected, and no husband. Forced into marriage at a young age, Aanganamal fled from her husband and his family. Marked by the stigma of refusing to live with her husband, she has worked as a prostitute over the years – "I have many illegal connections". She chuckles, shaking the bangles on her skinny arms, "I was infected by the policeman and the doctor in my town. They all know I'm infected, but they still ask to sleep with me. I still get a lot of trouble from the men." That said, she comments, "sometimes, if men come to me and want to be with me, they won't give me money. I have gold chains and rings, I'll give them away to the men if they come with me."

Aanganmal's story isn't easy to handle, nor is she a simple woman: her life has been marked by breaking rigid gender roles, social isolation, economic hardship, and severe health problems. She is sick again, and needs money. She doesn't hesitate to point out my relative wealth, and ask me for help each time we cross paths.

It would be easy to demonize Aanganmal. I must admit, she was not an easy person to meet. The face of HIV/AIDS is not an easy one, as Aanganmal demonstrates. And yet, the impulse towards judgement and moral high-handedness has significantly contributed to the impact of the disease. As Stephen Lewis, UN AIDS Ambassador, cries about AIDS orphans in Africa and the need for cheap anti-retroviral treatments, I think of Aanganmal. For her, and the other clients of my colleagues in Dindrigal, anti-retrovirals are still a long way off. The fight now is for basic care – nutrition, access to basic health care, community support, some source of economic income. And while the image of innocent children in Africa wasting away from a disease for which they carry no blame may draw international attention, I can't help but think this misses the point.

HIV/AIDS affects the individual, but it does not summarize them. Just as cancer doesn't define the essence of the person who is undergoing treatment, HIV/AIDS does not define the infected person. Still, the stigma is significant, and the challenges tremendous. AIDS prevention is continually stymied by gender discrimination, homophobia, cultural barriers and rigid social roles. Discussing fault of the individual removes responsibility from a system – in India and around the world – that has refused to acknowledge the reality of this illness until it reached overwhelming proportions.

Eberstadt, in Foreign Policy magazine, argues that while HIV/AIDS in Africa has reached critical mass now, India, China and Russia are next. While AIDS in Africa has been able to cartwheel out of control while the rest of the world has paid little attention, this will not be the case for Eurasia. "Circumstances”, he writes, “are rather different in the world's other area of rapidly spreading HIV infection. Eurasia is home to the great majority of the world's population; five out of every eight people on the planet live there. It has substantial economic weight – its combined GNP in 2000 of $15 trillion exceeded that of either the United States or Europe. Militarily, it is home to four out of seven declared nuclear states. This, unlike in sub-Saharan Africa, unexpected shocks (in Eurasia) will have major worldwide repercussion".

While the specter of the worldwide impact looms, and the ghosts of those we have forgotten or ignored peek over our shoulder, I think of the crew gathered around the green metal desk in Dindrigul. In the face of an illness that is challenging and perplexing, they maintain hope. They focus on one thing at a time: the first step, though, is recognizing the humanity – the human-ness – of it all.