“Apart from medicines, we need dignity.” For A. Thamil, director of Network for Positive People in Trichy (NPT+), the fight against discrimination has been a relentless one. Being HIV-positive, Thamil has seen personally how Acquired Immuno-Deficiency Syndrome (AIDS) can upend a life.
“You could probably make a TV series out of my story,” laughs Thamil as she recounts the dramatic twists and turns that ultimately showed her the way to activism. The petite and perky Maths graduate fell in love with a farmer, whom she used to meet on her vacations to her native Maanthurai village near Lalgudi. Thamil had lost her mother earlier on, and her professor father was unwilling to accept the couple’s relationship. Undeterred, the lovebirds decided to marry anyway.
Thamil was in her late teens, the mother of a girl and expecting her second child (she miscarried shortly after), when she came to know that her husband had infected her with the human immuno-deficiency virus (HIV).
“We wanted to commit suicide,” she recalls. “We had planned to poison our daughter first and then take it ourselves.”
But since their daughter was not infected, the couple was forced to give up the idea. “My husband died on December 3, 2001 because we couldn’t afford the medicines,” she says.
Thamil saw the discrimination kick in soon after, as family and community closed ranks. “It got so bad, that I wasn’t allowed to touch even the public water taps,” she says.
She shifted to Tiruchi with her daughter, but becoming a breadwinner was not easy despite her college degree. “I got turned down wherever I applied as soon as they came to know that I was HIV-positive, and my husband had died of Aids,” she says.
Tough start
Difficult though those days were, Thamil is glad of the initial non-acceptance. “It toughened me up for the bigger fight ahead,” she says.
She eventually got employed as a social worker with Anbalayam, Tiruchi, counselling sex workers and creating awareness about HIV. “Even though antiretroviral therapy (ART) drugs are available, few people know how to deal with HIV,” she says.
Rama Pandian of the Tamil Nadu Network of Positive People inspired her to start a branch of the organisation in Tiruchi district, and that is how the largely informal grouping of “48 HIV-positive people here who were able to get treated only in Tambaram, Chennai,” laid the foundation of NPT+ in 2002. Today, the organisation has 2,243 members, 120 of them, children.
In addition to ensuring a dignified and discrimination-free outreach programme for HIV-positive people, NPT+ also provides legal services, medical advice and nutritional food packs to its members. It has arranged 22 marriages for HIV-positive couples.
“There are many myths associated with being HIV-positive,” says Thamil. “For instance, we don’t all look skeletal … and we are not all in the sex trade or are homosexuals. Our members are from a broad base of the region’s population – government school teachers, college kids, and even paramedical staff, some born with it, many accidentally infected. We need to keep focusing on the reality of the disease.”
Among those realities is the difficulty of what she terms as “getting to zero.” She contends that while the government may have made some headway in controlling the spread of the virus in those who have already been infected, new AIDS cases still remain alarmingly high. “We cannot ensure zero infections without the co-operation of the public,” she says.
The strict adherence to the ART drug regime (available free in government-run centres and costing in the range of Rs. 600 to 2,500 outside), is absolutely mandatory, she says.
“As we see the second generation of people living with HIV, it’s becoming common to hear that the kids who took the medicine when young are refusing to do so when they get older. If there was proper follow-up from the ART centre counsellors, would this happen so often?” she wonders.
Targeting teens
The NPT+ will be focusing on HIV-positive adolescents (340 teens are registered at the ART centres) in the year ahead, and will be collaborating with other non-governmental organisations to offer psychiatric counselling and social support services to make young adults maintain their medical intake.
“Over the past 10 years, the dedication among field workers seems to have gone down, and I’m including myself,” says Thamil, when asked about the changing face of the AIDS battle in the country. “We can train people in empathy, but unless they themselves take the effort, field workers can get complacent.”
She also suggests that people who indulge in risky behaviour – injection drug-takers and those who have multiple sexual partners, for example – should voluntarily get tested before marriage. “Most of the infections among young couples are spotted only when the woman is pregnant – we can save the foetus, but the mother is already infected,” she rues.
Getting into advocacy has put Thamil in the public eye, and has also earned her accolades from the state government. But perhaps what she cherishes most is reuniting with her father shortly before his death last year.
“He read about me in a newspaper and became eager to patch up,” she recalls. “I’m glad we got reconciled in the end. I’d have felt guilty all my life if we hadn’t.”
