POSITIVE LIVES

Far from seeing themselves as victims, they radiate the confidence of winners in the battle against the AIDS virus. Each of these members of the Positive Women Network (PWN+) has an inspiring tale to tell. Neelam Sharma catches up with 10 courageous young women, who share their experiences of living with the much-dreaded HIV. There is no self-pity or blame game. Rather than being stricken with trauma, they have chosen to overcome the handicap.

Premarital info

With no support and virtually no information in hand, she vowed to fight for the rights of HIV-infected women in India. She started working with merely 18 members in Tamil Nadu in 1998. The numbers have swelled to 5,000 now and PWN+ has emerged as the frontier platform for the HIV-positive women to express themselves.

"At the age of 21, within three months of marriage, I was tested positive in 1995. Everyone told me HIV meant immediate death. No one had information, not even the doctors, nor did anyone want to talk about it. I felt miserable as the infection had been passed on to me by my husband, a lorry driver by profession. I had no clue what life would offer me. My anger was directed at my husband since he knew about his condition prior to marriage but out of fear did not let his parents know."

She separated from her husband, who later committed suicide in 1996.

She now advocates premarital counselling, which is absent in India. "The young girls should know what HIV means and how it is acquired. They have to know about sexually transmitted diseases. Only then can they safeguard themselves from getting infected. Information on HIV should be a part of every school’s curriculum,’’ she asserts.

She believes: Only information about HIV can check its spread; premarital counselling on HIV/AIDS should be mandatory.

Just claims

This 29-year-old teacher by profession is truly doing justice to her vocation. For, today, she is busy teaching the public at large that the lives of HIV-positive persons are no different from others’ and stigma should be the last word on one’s mind while dealing with infected persons. She came to know about her own positive status during her pregnancy five years ago. Her husband, too, was tested positive and he later died. "Initially, it was traumatic to learn about the infection. But I received a lot of support from my parents and a few NGOs who infused confidence in me to openly tell the world about my status. It is always cathartic when I share my experience with others," she discloses, even as she manages her four-year-old son, who is HIV-negative.

She believes: Keeping HIV under wraps leads to more suffering; be open about your status and fight for your rights.

Support groups

It was a love marriage for 37-year-old Udita, who started her domestic life with the same verve as most women in India do. A doting wife and a caring mother, Udita came face to face with reality when her three-year-old son died due to AIDS in 1998. She, along with her husband, an intravenous drug user, went in for tests, which confirmed their HIV-positive status. "I was angry and blamed him initially for ruining my life. But, since none of us had any correct information about HIV, it was pointless blaming each other. We decided to be pillars of strength for each other,’’ she says. The couple became founder-members of the group of positive people in Manipur. They work extensively for HIV-affected and high-risk groups. "We want to spread information about the infection to every corner of the state, where the government machinery cannot reach," adds Udita, still waiting for the right moment to disclose her status to her eight-year-old daughter, who is HIV-negative.

She believes: Positive people need to come together to fight for their rights and spread information about HIV and its spread.

There’s hope

Living life to the fullest is her mantra. This Class XII passout from Karnataka thought life was a bed of roses when she married in 1996. Reality struck when she tested HIV-positive within a few months of marriage subsequent to her husband being diagnosed with the same infection. Within months, she lost her husband and had to shoulder the blame for his death. Her in-laws threw her out of the house.

She did not lose hope, though, and found solace in working for an NGO for HIV-hit persons. She met her second husband, who is HIV-positive, and got married to him in 2000. "I have a three-and-a-half-year-old son from my second marriage, who is HIV-negative. I wanted to have a baby and had to follow the medication prescribed by doctors at the time of delivery so that the newborn did not run the risk of being HIV-positive. My husband and I are satisfied with our lives now," reveals Asha. She joined the PWN+ in 1999 and quickly rose to be its vice-president. She learnt to converse in English and Hindi and has already made numerous trips abroad to spread the message of positive living. "If one stays optimistic, time heals everything," she adds.

She believes: HIV does not mean the end of the road. It is the beginning of another journey.

Be proactive

As the daughter of a police inspector in Chennai, Shanti wanted to join the police force. But her parents had more conventional ideas for their only daughter. As soon as Shanti was through with her BA and turned 19, her marriage was arranged in 1996. She had been married for a short while when her husband fell sick and soon died of AIDS. She too was asked to go in for a test, which confirmed her positive status. "I saw my husband dying, which was extremely painful. Many people ask me if I blame him for giving me the infection. All I know is that I never questioned him on this issue. I am sure if he had more information about HIV and its spread, he would have never done this to me. I have no regrets. My husband loved me and I loved him."

Aware of the need for counselling, Shanti joined various NGOs to spread the word about HIV. "Now, I stay with my parents and help my mother in all household chores, besides working for the Network. Everyone in my family, except my younger brother, knows about my status."

She believes: The blame game takes one nowhere; forget the past and help others.

Reach out

She was 22 and pregnant in 2000 when the tests reports confirmed her HIV-positive status. Her husband was called for the mandatory test and he, too, was detected with the infection. Their lives fell apart since Nayana was the first to know about her status. She was blamed by her husband for infecting him. Her in-laws refused to support her and she took shelter in her parent’s home. "I was furious when my husband and in-laws blamed me for the infection. I separated from my husband and decided to begin life afresh. I gave birth to my son and got immersed in counselling others who are caught unawares by HIV," she says. She picked up the threads of her life post HIV and learnt to live life fully. "My aim is to reach larger sections of society and seek a better status for women infected with HIV. I am planning to enrol for a Master’s degree in social work. I have already been pursuing studies through correspondence courses," adds Pune-based Nayana.

She believes: Women need to be aware and empowered as they suffer more due to the stigma associated with HIV.

Resist bias

The high literacy rate in Kerala is of no help to the HIV-infected persons, she says, quoting instances of how children of HIV-positive parents are denied admission in schools there. The instances of HIV-positive persons getting lower salary worries her, too. "There is so much misconception about HIV that I am trying hard to convince people that it is not infectious," she adds. Infected in 1996, when her husband fell sick within a few months of marriage, the couple faced the ire of both sets of parents. , my parents as also my husband’s refused to accept us. Slowly, they got information and accepted us," says Bindu, who started working for the Network in 2000.

She believes: Information alone is the strongest tool to stop discrimination meted out to HIV- positive people.

Uphill task

For this 30-year-old science graduate, nothing is more satisfying than sharing her experience with others in a similar situation. Life became tough for her when her husband, a food technologist, was tested HIV-positive in 1999. She, too, acquired the infection, but her eight-year-old daughter was mercifully spared. Till the time her husband was alive, she spent lakhs of rupees on his treatment. "Despite being educated, I went to quacks in search of a cure for HIV, which, the doctors had told me, was incurable. We even disposed of our property but my husband succumbed to the disease in 2003. I realised how futile the whole exercise had been. Even today, there are people who spend blindly in the hope of a cure. I want to tell them that leading a purposeful life is better than running blindly and wasting time,’’ she says. Her life now centres around her daughter. She counsels people about the disease.

She believes: Do not run after quacks who promise a cure for every ailment; live life to the fullest each day, with no worries about tomorrow.

Fight for change

This 27-year-old’s radiant face and sparkling eyes can captivate anyone. Yet, it is her sense of purpose that sets her apart. She believes that though women living with HIV in the lower strata of society have begun to come out in the open, those from the upper echelons of society still prefer to keep mum on the issue. "When I lost my husband to AIDS in 2002 and had to return to my parent’s home, I had no choice but to speak up for my rights. I was denied property rights and was facing a financial crisis. I had lost my father early in life and started living with my mother and younger brother after my in-laws shut the doors of their house for me. I regained confidence and now manage the centre for positive people in Vadodara. At every step, we have to fight a closed mindset but I am sure we will bring about a change," she says confidently. After being forced to vacate her previous office, she has recently moved to a new place. "Let’s see how long people will let us work here," she chuckles.

She believes: HIV infects both rich and poor; high-society women should also come out in the open and fight for their rights.

Heal thyself

She was merely 16 when she got married and just 20 when she lost her husband to AIDS and discovered she herself was HIV-positive. "I came to know about my status in 1998. Since then, I have tried to work in a close-knit group with other infected persons in Mumbai. Coming out in the open was initially difficult, but with the support of a few NGOs, I could heal myself and begin working for others," she divulges. She joined the Network in 2001 after her in-laws refused to shelter her. "I am not in touch with my in-laws now," comes her matter-of-fact reply. Post HIV, she wants to fulfil her childhood dream of studying further. "I had left my studies when I got married. Now, I am doing BA and my final year exams have just finished," she says.

She believes: Lack of information leads to stigma and discrimination; positive people should live healthy and fulfil their dreams.

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