Married, with AIDS
|Aug 13, 2007|
Radhika, 26, and her boyfriend Mohan, 32, are excited about their October marriage in the Mumbai suburb of Thane. They have booked a banquet hall, invited 500 guests, lined up the best florist in town and a couturier to do their wedding ensembles.
Everything is as it would be for any young couple getting married in India, except for one thing – Radhika and Mohan are HIV-positive and facing considerably social opprobrium in India’s strait-laced society. They met last year at Jeevansathi, India’s only marriage bureau for HIV-positive people — one run by HIV-infected people themselves — in Thane. They consider the organization a godsend.
Although acceptance has begun to percolate up in western societies, HIV and AIDS still spell deep humiliation and ignominy in India, where the number of sufferers is rapidly growing. As many as 2 million to 3 million people are living with HIV in India, according to the National AIDS Control Organization. As late as 2005, according to a study by researchers Pallava Bagla and Subhandra Menon, the country had only about 600,000 people in need of anti-retroviral drugs. With 39.5 million AIDS-afflicted worldwide, India now has about eight percent of the afflicted population.
HIV emerged later in India than many other Asian countries, but this has not limited its impact. The crisis continues to deepen, as it starts to come clear that the epidemic affects all sectors of Indian society, not just high-risk groups such as sex workers and truck drivers, the disease’s original vector. In a country where poverty, illiteracy and poor health already present a daunting demographic challenge, the rapid spread of HIV makes the scenario even more worrisome.
Jeevansathi, which means “life companion” in Hindi, has been running since 2006 to help HIV-infected people find like-minded spouses. Part of a larger community-based outfit called NTP+ – Network in Thane by People Living with HIV/AIDS – its goal is to enhance the quality of life for HIV sufferers and to provide them with a sense of security and belonging. NTP+’s membership is open to all HIV-infected people living in Thane, irrespective of gender, caste and religion. Confidentiality is assured to all members.
“Jeevansathi is a forum for HIV-positive people to mingle, interact and find like-minded life partners,” said Shabana Patel, 29, the president of NTP+, herself HIV-positive and a widow. NTP+ currently has about 800 registered members, of which 60 percent are women. Apart from the marriage bureau, the group also promotes social acceptance of people living with HIV and their families by reducing stigma and discrimination. It also provides networking opportunities for HIV-affected people and sensitizes society about the disease.
The government, through its National Aids Control Organization, has been pushing an ambitious plan for free anti-retroviral drugs in selected cities across the country, a plan, according to the study by Bagla and Menon, that is “fraught with challenges – of fair access to the needy, infrastructural issues, immature management of medication and trying to keep pace with an ever-growing need. It is also a plan made difficult in its implementation by sheer numbers.”
The idea for the marriage bureau was born out of monthly support group meetings where at the modest NTP+ office. “Nobody appreciates the value of a life partner more than people like us, simply because we value each moment of our life so intensely,” explains Diksha (name changed), a volunteer who got married through the bureau last year. “The social alienation for an HIV-infected person can be scary. So marriage brings an element of security into our miserable lives.
Four counselors advise bureau members about marriage- and sex-related issues. “Often HIV-infected people have serious misgivings about their bodies, about how they ought to conduct their married life, about having children etc,” explains a counselor. “So we sit with them and clarify their doubts. We advise both potential life partners to attend our counseling sessions together so that issues can be thrashed out better.”
The youngest registered member of the network is an 18-year-old girl. “There’s no pressure from my parents to marry,” she says nonchalantly, “but I’m sure my life will improve once I find an understanding husband. After all, I won’t have parents to take care of me all my life.”
“I don’t have the heart to tell my mom about my disease. Besides, she won’t understand,” says Ashok Dhokle, 32, a registered Jeevansathi member, who was diagnosed with HIV five years ago. He prefers to keep his aging parents in the dark about his secret while he searches for a partner, factoring into his savings the medical cost for his prospective wife and himself.
There are many poignant cases at the marriage bureau. Mohan Ganguly, 36, for instance, says he was disinherited once his father learned that he had contracted the disease through a blood transfusion. When he was ill with AIDS, his parents and siblings crowded around his hospital bed, he says, finalizing plans to shift his daughter from an earlier marriage to an orphanage on what they thought would be his inevitable death. But Mohan says his daughter held out hope for him, encouraging him to start thinking positively and to live life afresh. He regained his strength and now he’s here at NTP+ to seek a mother for his only child.
But though the marriage bureau symbolizes progressive thinking in a traditional society, there are still ossified beliefs. It is still tough, Shabana says, for widows with kids to find a suitable match. Family pressures often complicate matters. Also, counselors say, parents insist on finding daughters-in-law in their same castes even if their sons are open to other options. And there is the skewed sex ratio. Of the 40-odd registered members, only 12 are males.
But regardless of the bottlenecks, forums like the marriage bureau hold out hope for the HIV-afflicted, who are struggling for normalcy. Small wonder that despite being a widow Shabana hopes to find another suitable mate. Above all, her aspirations are pretty normal – she wants a man who will be “understanding, empathetic and sweep me off my feet”.
“For us,” Shabana concludes, “it’s not so much about the years in our life that matter but the life in our years.”