“I enjoy being the messenger for God in terms of letting people know about HIV and AIDS.”
Having lost her mother at the age of two, Kousalya spent her childhood shuttling between the homes of her grandmother and stepmother, in the small town of Namakkal in South India. She aspired to be a nurse, but her family did not allow her to study beyond 12th standard .She was married off to a cousin soon after completing secondary school. Forty-five days later, her husband committed suicide, and the cause of his death was kept a secret from the young bride. She was subsequently driven out of her marital home. When she herself fell ill, she went to a clinic, where a staff nurse made the shocking revelation that her husband had tested HIV positive. It had also been transmitted to Koushlaya through her husband.
“The doctors had warned me that I won’t live beyond a few months, so whatever needed to be done must be done quickly,” laughs Kousalya. Filled with anger and outrage at how her family had treated her, Kousalya took the brave step of filing a case with the local police. Ignorant of the stigma attached to HIV and AIDS or the seriousness of the illness, she went public with her story in 1995, becoming the first woman in the country to come out openly with her status. The media approached her for her story. “They told me my story would be useful for other women, so I said okay because I had heard about other people who were infected and had similar problems to mine,” she said. She says she became an activist by accident.
Her story made national headlines, which Kousalya considers a blessing in disguise, and she came in contact with several citizen organizations working on the disease. This interaction opened up an entirely new world for Kousalya. Armed with information on the disease, she started work in a private hospital as a counselor and began to put together the elements of a model that could break through personal and institutional roadblocks. She moved from Namakkal to the state capital of Chennai with her uncle in 1997. Here, she joined an initiative called INP Plus (Indian Network for Positive People Plus) which disseminated information about HIV/AIDS. When INP Plus opened a separate wing for women and children – PWN (Positive Women’s Network) Plus – Kousalya was chosen to head it. Along the way, the Tamil-speaking young woman taught herself English in order to connect with national and international players and policy makers.
Many in Kousalya’s place would have wallowed in self-pity and blamed their fate for all the misfortunes that had befallen them. But not this brave heart, who shook off the disappointments and the tragedies that beset her life, and extended a comforting hand to hundreds of other HIV positive women, giving them emotional support and the encouragement to face life’s challenges. Those were hard days for HIV patients. People then believed that AIDS virus would spread through air and even doctors were scared of treating HIV patients. “There were many myths about the disease, but the situation has improved much now,” says Kousalya, whose organization works with around 30,000 HIV positive women in 13 States.
There are about 2.5 million HIV positive people in India now. “About 40 percent of them are women. It is estimated that nearly 86 percent of the women got the virus from a single partner, in most cases their husband,” she discloses. She goes on to dispel certain false beliefs about the disease and says 92 percent of children born to HIV mothers are not born with the disease. Fifteen years ago the cost of anti-retroviral drugs used in treatment of HIV/AIDS – which can only be controlled and not cured – was very expensive. In 2000, when Kousalya began her treatment, she used to spend Rs.7500 every month on her medicine. Now the drugs are available free of cost in government hospitals. PWN along with other agencies fought for free treatment of HIV patients.
She finds that the biggest problem for women in India now is that while there is information on HIV available to sex workers and truckers, there is not enough of it for housewives. But her greatest hope for women in India is that they will shrug off the stigma the virus carries. “I’ve been living with HIV for 15 years. HIV is a label. Like any disease, people are creating the label so if they themselves remove the label, they can lead a normal life.”PWN has also started working among HIV positive children and adolescents.
PWN Plus’ pan-India membership has ratcheted up from four to 7,000 plus, making it the only national-level lobby group to have a separate focus for HIV positive women. “One of PWN’s newer projects, Social Light Communications – supported by UNDP – has established a designing and printing unit for positive women in Chennai, Tamil Nadu. Through this initiative, positive women design banners, posters, gift articles, jewelry and greeting cards to sell them to large corporations .The profit from this designing unit is being ploughed back into providing jobs for positive women. A textile shop at a district called Villupuram in Tamil Nadu– which sells saris – is also supported with the funds, and provides work to about 50 positive women on a regular basis. These saris are bought from whole sale merchants and sold by positive women to corporates and walk in customers.
Since 2013 PWN has also started working among HIV positive children and adolescents. “We conducted two programs and connected with about 150 children. “We want to find ways to stop discrimination of HIV children in schools and work for setting up of youth resource centres for HIV children, who could then come together and be a support for each other,” says Kousalya. Today, PWN+ helps some 10,000 women with HIV, and has member networks in other parts of India. It has also spun off social enterprises, including Social Light Communications, a business providing design and print services. Similarly, the network’s WE (Women Empowerment) shops – launched in 2007 – are providing livelihood to women across five states. “These mobile shops display and sell products like craft items, savories’ and honey made by positive women,” informs Kousalya.
“Today,” elaborates Kousalya, “we have 14 state networks in Tamil Nadu, Kerala, Andhra Pradesh, Delhi, Rajasthan, Manipur, Pondicherry, Karnataka, Maharashtra, Mizoram, Madhya Pradesh, Haryana, Uttar Pradesh and Orissa. Our networks in five states like Maharashtra, Mizoram, Manipur, Pondicherry and Haryana are operating without any external support or funding. “While focusing so much on kids, does the crusader regret not having any of her own? “Life is too short for regrets,” she says. “I’ve made a name for myself because I am HIV positive. I consider this an advantage. Else, I may well have died unsung in Namakkal!”
As president of PWN Plus, Kousalya frequently travels in India and abroad playing multifarious roles – of activist, counselor and speaker on HIV and AIDS issues. She speaks fluent English and adroitly handles journalistic enquiries. “I have addressed the Indian Parliament (2000) about the problems of HIV-positive people, spoken at the British Parliament (2004), had interactions with erstwhile president Dr A.P.J. Abdul Kalam (2006), U.N. Secretary General Kofi Annan (2006) and with Congress President Sonia Gandhi (2006),” she says with pride.