B Sarasu lives a hardscrabble life in a dark shack in Palavanatham village, about 450km south-west of Chennai. She says she is 40, but looks older. She has lived by herself since she was abandoned by her husband Balasamy 15-20 years ago. “I’m taking these medicines, right? My memory is going,” she says, explaining why she cannot remember when her husband left.
About three years ago, Sarasu developed a cough that wouldn’t go, and vomited several times. Doctors at a private hospital in the nearest town, Virudhunagar, diagnosed her with HIV and directed her to the local government hospital for daily antiretroviral drugs, which the government issues free of cost. She is not sure how she contracted the virus. She hasn’t told anyone in her neighbourhood about her condition, but knows there are questions about her recurring fevers. “No one will eat anything that I cook,” she says.
Second life: B. Sarasu, a daily wage earner, is grateful for PWN’s support. Nathan G/Mint
She goes out each day to sell her wares—plastic combs, mirrors, balloons—and when she has sold goods about Rs 50 worth, she returns home, makes a rice porridge, eats it and lies down to rest. Her four brothers and their families living nearby have little to do with her.
Sarasu’s isolation might be even deeper if not for the women of the Positive Women Network (PWN), a non-profit organization that focuses on counselling and treatment referrals for women and children who are HIV-positive, or whose lives have been affected because of the virus.
As is the case with most its members—the non-governmental organization’s (NGO’s) preferred term for people who avail of its services—a PWN outreach worker first met Sarasu at the antiretroviral therapy (ART) clinic three years ago at the Virudhunagar Government Hospital and invited her to the network’s drop-in centre to talk about her situation.
Now, when it is time for Sarasu to refill her medicine each month at the hospital, one of the outreach workers takes a public bus to Sarasu’s home and accompanies her to the hospital, making sure she gets her refill (some members need encouragement to stay on their daily drug regimen with its gruelling side effects, say PWN workers).
Today, more than 20,000 members like Sarasu derive strength from the sisterhood cultivated by the network, established in Chennai in 1998 by four HIV-positive women. PWN operates five drop-in centres in Tamil Nadu mostly with funds from Central and state AIDS-control organizations. The NGO has had a rural focus from the beginning, according to PWN president P. Kousalya. “In rural areas, there’s very little information (about HIV/AIDS) as compared to urban areas,” Kousalya says. “There are fewer health services. There’s more discrimination—hospitals shunt people around.” At the societal level, though there is less open discrimination than in urban areas, according to Kousalya, the internal dynamics in families and communities as a result of HIV could make life very difficult for those infected, making an outlet such as PWN “a very good platform for them to share their problems”, she says.
The workers are always discreet when they visit, Sarasu says, and on the rare occasion when neighbours ask about them, she describes them merely as health workers. During a recent visit, PWN worker Padma Easwari chided Sarasu for neglecting her vitamin supplements, which Sarasu claimed were inconvenient to take while on her itinerant job.
After the monthly hospital visit, Sarasu goes with the PWN worker to the network’s drop-in centre, where she gets a meal and Rs 10-20 for the bus ride. She also gets the occasional packet of cooking oil (the centre tailors its services to the needs of each individual). But above all, she gets from PWN the courage to face her condition. “They told me, ‘We all have it’,” Sarasu says, referring to the fact that most of the women employed by PWN are HIV-positive. “Why are you scared?”
Positive Women Network: www.pwnplus.org