I first met Kousalya in 1999. She was just back from a hospital and looked extremely thin, tired and weak. But her strength shone through in a joke she cracked.
Visits to hospitals had become a part of her life, she quipped, like visits to cinema halls and supermarkets are to other people.
Six years and many meetings have passed since then. Kousalya is now the face of India’s battle against the dreaded Human Immunodeficiency Virus that causes the Acquired Immunodeficiency Syndrome, or AIDS.
Yes, Kousalya is HIV positive. And she has not let the virus drag her down to negativity. She has fought it every way she can — not only inside her body or in Namakkal, her hometown in Tamil Nadu, but all over the world.
Ten years ago, Kousalya was the ordinary young bride of a truck driver. Within a month of her marriage, her husband fell ill. His doctors wanted a test to be done on her too. The results said she was HIV positive.
She didn’t even know what it meant, then.
Seven months later, AIDS, the new word in her vocabulary, killed her husband. Some of the doctors gave her two months to live.
She proved them wrong.
The thin, tired Kousalya has now added a few kilos, and a lot of self-belief. From a timid girl hesitant to speak even in Tamil, she has transformed into a woman who radiates confidence and is quite fluent in English.
As the president of PWN Plus — Positive Women Network Plus — she is the brave face of HIV positive women in India.
“When I first started taking the ART [anti-retroviral therapy] drug in 1999, it cost Rs 7,000, now I need to pay only Rs1,600 for it. I need one dose a month. Now, the government gives it free also. But since I can afford it, I buy my dose,” Kousalya says, outlining probably the most positive development for AIDS patients so far.
One aspect of Kousalya has not changed, though. She still wears a smile, always, though it hides a volcano of pent-up anger. Her husband knew he was HIV positive when he married Kousalya.
“I couldn’t bear the thought of being cheated. More than sad, I was very, very angry,” she says. “Even today, the thought of having been cheated is extremely painful to me. I still can’t get over it.”
Unlike many HIV positive people in India, Kousalya’s family and friends stood by her, which gave her “the courage to face the reality.”
“Though there is stigma and discrimination attached to HIV and AIDS, I did not face it. When I came to know that there were other victims also like me, I wanted to put an end to such injustices. I decided no other woman should go through what I went through.”
Kousalya decided to speak to the media about how she was cheated and what precautions young girls should take before getting married. It was a brave step at a time when AIDS patients had as hard a time fighting the society as the disease. As Kousalya recalls, “In those days, nobody openly admitted to being HIV positive.”
Kousalya even let herself be photographed.
What changed her life was a meeting she had with Ashok Pillai, an HIV positive person who made no bones about his ailment, in 1997. Pillai and Kousalya were both in Madurai as speakers at a public function.
Remembering Ashok Pillai
“It was from him that I got the strength and confidence to face the world, and speak aloud,” says Kousalya.
When Pillai modelled for a poster on HIV positive people, it was the first of its kind. “He was the first one to come out. But today, there are so many such faces in the open,” says Kousalya.
She moved from Namakkal to Chennai with her uncle, and joined Pillai in his initiative called INP Plus (Indian Network for Positive People Plus).
When INP Plus decided on a separate wing for women and children, they started PWN Plus. And who better to head it than Kousalya? From 60 members, the number of women members of PWN Plus has grown to 5,000.
The first international conference Kousalya attended was in Malaysia, in 1999. “I didn’t know anything about conferences then. I didn’t know to speak or express myself in English. I was also very scared. I asked for an interpreter and spoke in Tamil on what we ‘positive’ women faced,” says Kousalya.
“I also had to make a presentation at the conference; Ashok helped me. It was Ashok who gave me a lot of confidence and allayed my fears. We also fought a lot. Ashok said I should not talk ill of my husband but I could never forgive him [her husband] for what he did to me. Ashok also pointed out that I had a lot of pent-up anger in me which I should learn to channelise.”
The anger is still there, but she has harnessed it. “My anger gives me a lot of energy, and I use it to do better things. But when I feel terribly angry, I give vent to my feelings by painting. Painting to me is like shouting or crying aloud.”
Times have changed, Kousalya says. There was a time when people would not even go near an HIV positive person. “Now the general public, at least in Tamil Nadu, do not show any discrimination.
“It’s all because of the networks we have even at the district and sub-district levels. To remove stigma from this disease, even the government is taking us to various platforms and making us speak. That is not there in other states, except Andhra Pradesh.”
Kousalya says till recently, the National Aids Control Organisation used to draft policies on its own. Now, because of protests from various networks, NACO is involving HIV positive people in its committees.
Similarly, NACO did not even have programmes for women, except for commercial sex workers.
“Who will know us and our problems better than ourselves,” asks Kousalya. “Things are changing now, with gender committees and gender desks in place.”
Now, new projects and travels take up most of Kousalya’s time. Her life revolves around PWN Plus. “I don’t think of myself as a separate identity from PWN Plus. When I look back, I cannot believe how far PWN Plus has progressed and how much we have achieved.”
She is also doing her thesis as a population health Fellow with a fellowship from the Population Council.
Does she miss being married, having a family, having children? Kousalya’s answer is a firm ‘no.’ “Because I have not seen any man who is different. I find them still the same. As for children, I see a lot of children all around me. I told Dr Manorama of CHES [a Chennai organisation that works with AIDS orphans] that I wanted to go there on Sundays to take care of the AIDS orphans but soon I found I have no time for that,” Kousalya says.
“I look at it this way: There are so many women and children who are suffering; why not spend my life for all of them?”
She does indulge in life’s simple pleasures — like riding a two-wheeler to office. “I wanted to own a vehicle for a long time. Now that I have one, I feel so liberated and free — like a bird.”
Dreams? She chuckles. “I have spoken in the Indian Parliament to our MPs about the problems HIV positive people face. I also was fortunate enough to address the UK Parliament. I have had interactions with our President Dr APJ Abdul Kalam, with UN Secretary General Kofi Annan and also with Congress President Sonia Gandhi,” Kousalya says with evident pride.
“I could achieve all this because I was an HIV positive woman. I consider these some of the advantages of being a ‘positive’ woman! If I were not HIV positive, I would have lived like an ordinary woman in Namakkal!”
The extraordinary woman from Namakkal has given the phrase ‘positive thinking’ a whole new meaning.
December 1 is World AIDS Day.
