Gopichand, Kousalya, and Manoj are HIV positive. Speaking openly about their status and unafraid of stigma, they walk that extra mile to make a positive contribution to society and strive to lead a dignified life.
Gopichand
Three years ago, on Valentine’s Day, Gopichand from Manipur hoped to turn a new leaf in his life. He had finally quit drugs and was set to make a new beginning.
As an intravenous drug user for close to three decades, Gopichand had regularly shared syringes with his friends from school in Manipur, right through his years at college in Chandigarh. “I stopped sharing syringes only when 2-3 friends tested HIV positive,” he recalls. And then, one day, in the early ’90s, his world came crashing down. “I had gone to donate blood for a relative when I too tested positive.” There was no turning back the clock.
“I was a happy-go-lucky person and never bothered about anything. Since my childhood I was a spoilt and pampered child. My parents knew about my habits but never stopped me,” he reminisces.
Even the results of the HIV test failed to change him … until he underwent rehab at a center in Delhi. His sister was his only source of strength. The others had simply abandoned him, changing his perspective on life forever. He finally kicked the habit on 14 February, 2004. But his trauma was far from over. Three year’s on, Gopichand still finds himself jobless and makes do with whatever comes his way, suffering severe bouts of depression from time to time.
With no job, no family, and no friends, Gopichand is a lonely man. “But I try and keep a positive attitude,” he says. His mental strength stems from this attitude.
“I never let it take me over,” he says. “That way I’ll never be able to live.”
Today Gopichand’s CD4 count is below 200, and he is on regular medication. And Hope!
Kousalya Periasamy
Kousalya Periasamy, 32, vividly recalls the day she came to know that her husband was HIV positive. That was within weeks of their marriage in 1995. Kousalya’s husband knew he was carrying the virus before their marriage but kept it a secret from his bride-to-be.
“At that time, I did not know what HIV was, even though I had done a nursing course. All I knew was AIDS meant death. Our teachers used to shy away from talking about sex and we had barely been introduced to the concept of reproductive health,” she remembers.
Angry and hurt by her husband’s ‘betrayal’, Kousalya returned to her maternal grandmother’s home. She saw her husband only once again, when he came to inform that he would be marrying again. But that marriage never took place. Seven months later, he was dead.
Kousalya began sharing her experience and educating other girls in her hometown of Namakkal, in the state of Tamil Nadu, where HIV prevalence is a severe problem. A study among 460 HIV women of Namakkal by Kousalya (through a fellowship) showed that more than 75 per cent of widows had HIV positive husbands, and 98 per cent of them had been infected by their husbands. Kousalya visited some of these HIV positive women, but most were unwilling to reveal their status and join her campaign to raise HIV/AIDS awareness. She then moved to Chennai, where she started the Positive Women Network of South India (PWN+), the first support organization for women living with HIV in south India.
Many of the women in PWN+ have similar histories. They were married to HIV positive men who, often knowingly, infected them with the dreaded virus. Now, many of them are widows.
Today, the network offers counseling, education on issues affecting women living with HIV, income-generation training, and referral services. It focuses on motivating members with positive messages, because, as Kousalya explains, "a positive individual can live with hope if she meets another HIV positive person." Today, PWN+ has nearly 5000 members. Providing information on prevention is an important part of PWN+’s role in the community.
"Most women believe their husbands...at the same time, the government is sending out the message that after you are married, you will not get HIV if you are ‘true’ to your husband,” Kousalya explains. "Income generation does help a lot, but the condom issue is still a big problem for women."
PWN+ also has a program that trains women participants to visit local colleges, where they speak to students about HIV/AIDS and share their perspective on "positive living." In addition to providing essential information, this outreach helps dispel the stigma and discrimination that affect many people living with HIV/AIDS.
Today, Kousalya is a strong and independent person. She is not only running the network but is at the forefront of several programs where she negotiates on behalf of HIV positive women.
Manoj Pardesi
Manoj Pardesi, 37, came to know he was HIV positive in 1997. “I had enrolled for the Osho Meditation Camp where HIV test is compulsory. That’s when I found out,” he says.
For the first six months or so, he was a shattered man. He had little knowledge of HIV/AIDS. “All I knew was I would die and nobody would marry my sisters.”
During that period Manoj even tried committing suicide twice. “Then a doctor counseled me on the difference between HIV and AIDS,” he adds. Soon Manoj left his job at a resort near Pune and joined the local branch of Positive People’s Network. “That boosted my confidence. Meeting positive people and sharing our problems, encouraging each other helped me a lot. I also saw others who were living healthy even after 10-15 years of having contracted the virus.”
Even today, his 62-year old mother does not know that he is infected. “Even if she does, we have never discussed it directly. In fact, what we HIV positive people need to do is to actually deal with this fear and self-stigma that we impose upon ourselves. If I am not comfortable with myself, I will feel every action of others to be directed against me. That adds to the problem and forces HIV positive persons into isolation. At other times, it is the attitude that defines one’s behavior. We have to learn to deal with all this,” Manoj says.
In his bid to overcome the stigma, Manoj began going public. “More than 85 per cent of transmission is through sex. I can proudly say that by declaring my status, I am limiting this virus within myself, and helping prevent the virus from spreading. A lot of preventive work can be done if all HIV positive people come out in the open,” Manoj suggests.
Today, Manoj works to help others as a consultant UNDP’s HIV/AIDS workplace program for UN staff and their families.
RSS