The South Asian: India: Living Positively despite HIV

December 10, 2006

India: Living Positively despite HIV

An integral part of PWN+ activities is to sensitise communities and mainstream healthcare providers so that women living with HIV/AIDS are not denied treatment or subjected to indignity.

New Delhi, (WFS) - When Thamil, 26, tested HIV positive during her second pregnancy, she made a pact with her husband. If he and their first child - a girl - also tested positive, the three would commit suicide to escape the stigma and fear attached to AIDS in their village in Tamil Nadu's Trichi district.

When their daughter was found negative - and her husband tested positive - they did a quick re-evaluation. "My husband gave me a lot of emotional support in the absence of any medical counselling," recalls Thamil. "He said we would have to live for our daughter, otherwise she would be orphaned." However, her husband died of AIDS in December 2001, six months after being diagnosed, and 11 days after her second daughter was born. Infected with HIV, the infant too died shortly afterwards.

"I felt deserted, like my future and that of my daughter was dark," she says. A chance glance at a public health poster on HIV/AIDS made her visit the NGO referred to. It was here that she first heard of a network of HIV+ women that cut across several Indian states to forge an alliance dedicated to understanding HIV/AIDS and removing the socio-cultural barriers that prevent HIV+ women from living respectable and fruitful lives.

From 18 founder members in 1998, the Positive Women Network (PWN+) today has over 5,000 members, many of whom are leaders and frontline workers in Karnataka, Kerala, Andhra Pradesh (AP), Maharashtra, Gujarat, Manipur, West Bengal, Assam and Orissa.

Significantly, PWN+ grew out of the strength and conviction of a frail young woman - Kousalya of Nammakal district in Tamil Nadu. Kousalya was forced to marry her paternal aunt's son, a truck driver, in order to retain her share of the ancestral property. Barely three months later, she began to fall sick. Her husband too, was ill, and Kousalya was sent to her maternal grandmother's house.

Here, she was shocked to learn that her husband was HIV+ and that she might be infected too. She received another blow when she discovered that her in-laws knew of her husband's HIV status before his marriage. Her final disillusionment came when she discovered that her husband's family was planning to get him remarried.

Pushed to the limits and determined not to let them destroy another woman's life, Kousalya decided to file a case against her husband. But he died before she could take any action. By that time, Kousalya's story had spread and many NGOs came to meet her. "It was then that I realised I was not alone. There were hundreds of women like me, who had been misled and forced to live shattered lives, shunned by society," she says softly. Out of this realisation came the idea to form a women's group to provide support and encouragement to women like herself.

At a unique gathering in Delhi recently, more than 120 HIV+ women from 16 states converged to evolve new strategies and forge new partnerships towards a strengthened response to AIDS. "There are more than 2 million HIV+ women in India. Women face specific vulnerabilities and the AIDS challenge needs a response from every sector," says Kousalya, who is also the PWN+ President.

"We are here to prevail upon different departments to incorporate the concerns of women living with HIV/AIDS in their programmes," she stressed. At the conclusion of the three-day meet, the network released a Draft Declaration. In it, the network demands a representation of HIV+ women in policies and programmes meant for them, access to information on services and treatment of opportunistic infections, and the availability of ARV (anti-retroviral) drugs for positive children. The declaration also calls for a prompt and comprehensive review of laws to include women's rights to inheritance, custody, property and maintenance, and ensuring socio-economic rights of women living with HIV/AIDS at the family and community levels.

Women make up nearly half of the 37.2 million adults (aged 15-49) living with HIV worldwide; and it is being widely recognised now that HIV/AIDS is fuelled by gender discrimination. According to the 'AIDS Epidemic Update 2004' brought out by UNAIDS and WHO, women are more physically susceptible to HIV infection than men. Male-to-female transmission during sex is about twice as likely to occur as female-to-male transmission, it points out.

Poor access to information, poor negotiation skills and the growing incidence of violence against women increases their vulnerability to HIV/AIDS. For instance, Jahnabi, 28, from Assam, contracted the virus from her husband who did not tell her about his HIV+ status before their marriage. Within 15 days of his death due to AIDS, her mother-in-law threw Jahnabi out of the house.

"First she starved me and then she asked me to leave. My in-laws even disowned their own grandchild (Jahnabi's daughter)," she remembers painfully. The death of her daughter when she was only two was a blow that might have emotionally crippled Jahnabi for life, but for the support of her mother and younger siblings.

Getting social acceptance, however, was a tough struggle. As the first woman to go public about her HIV+ status in Assam, Jahnabi became a known media figure. When her landlord learned of her HIV status from news reports, she was asked to vacate the house. But the undaunted Jahnabi continues to spread awareness about positive living. With support from the Assam State AIDS Control Society, she has set up a drop-in center in their new premises. "Today, we are very happy that so many women have come out to discuss various issues about HIV/AIDS under one platform," she says of the Delhi gathering.

"We want to live with respect and dignity," declares Daisy David, 38, of Tamil Nadu. "If we are willing to come out and declare our HIV status, we expect support from the society. We are people living with HIV and not patients."

Daxa Patel of Gujarat, Bindu from Kerala, Shabana in Maharasthra and Renuka from AP are all working actively to make a "positive" difference to the lives of women living with HIV/AIDS. Across India, the network has made considerable impact, helping women exercise their personal rights, access health services and adopt a "positive" lifestyle.

An integral part of PWN+ activities is to sensitise communities and mainstream healthcare providers so that women living with HIV/AIDS are not denied treatment or subjected to indignity. Says Kousalya, "In the journey of life, we have moved on from being "traumatised" individuals to an empowered collective."

- This story by Nitin Jugran Bahuguna was written for Women's Feature Service and first published there. Women's Feature Service (www.wfsnews.org) is the only international women's news/features syndicate producing features and opinions on development from a gender perspective. Phone: 91-11-2435 9886, 91-11-2435 2546; Fax: 91-11-2435 4606, Email: wfsdelhi@vsnl.com

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Posted by collective at December 10, 2006 10:22 PM

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