Jahnabi Goswami is the first woman in the northeast to declare her HIV status. She has lived with HIV -- and the accompanying discrimination -- for ten years. In 2002 she set up the Assam Network of Positive People to build the capacities of people living with the virus. "Until my last breath, I will continue my awareness campaign," she tells Nava Thakuria
Jahnabi Goswami, 29, is the first woman in the Northeast to declare her HIV+ status. In 1996, when Goswami came to know that she had been infected by her husband, who died of AIDS, it shattered her completely. However, unlike many people who opt for a life of anonymity after they are diagnosed as HIV+, Goswami decided to create awareness on HIV/AIDS and help many AIDS patients.
Born in Nagaon village, Assam , Goswami married a young businessman at the age of 18, in 1994. After two years, her husband died of a `mysterious' disease. Soft-spoken Goswami says her parents had arranged her marriage to the Guwahati businessman without bothering to check anything about him. Her husband had AIDS before marriage and her in-laws concealed this fact from them.
Today Goswami insists, "Go for a blood test before marriage. It is more important than matching the kundalis (horoscopes) for the bride and groom."
After her husband's death, Goswami's in-laws threw her out of their house and she was forced to go back to her parents' home in Nagaon. Her in-laws did not even let her take her daughter, Kastorika, or her belongings. During her stay in Nagaon, Goswami came to know that the mystery disease her husband had was AIDS. She was devastated when she learned that she too had been infected. "I was totally blank about HIV/AIDS and feared that I too would die within a short period of time."
Meanwhile, after the intervention of the police and the court, her in-laws returned all her belongings and Kastorika. But by 1998 Kastorika died as she too had been infected.
After her daughter's death, Goswami decided to make HIV/AIDS awareness her mission. She joined the government-run Assam State AIDS Control Society (ASACS). This meant she had to now leave Nagaon and settle down in Guwahati. But in Guwahati, houseowners (of her rented accommodation) would ask her to leave the house as soon as they came to know she was HIV+. "One houseowner did not allow me to stay for a single day," narrates Goswami, who was forced to change her residence often.
However, after some time, Goswami was allotted a room by ASACS inside the Health and Family Welfare Training Centre. In 2003, reading media reports about the harrowing time Goswami had had in finding a place in the city, Assam Chief Minister Tarun Gogoi alloted a government flat to her.
Goswami says women with HIV/AIDS get a raw deal in Assam . "Most of the infected women are very young. The married women don't get support from their in-laws and are even rejected by their parents. They face a lot of discrimination in society. Many people still believe that any woman who is HIV+ is of loose character," says Goswami.
There are about 100,000 HIV+ patients living in the Northeast. Statistics reveal that 155 AIDS cases and 404 HIV+ cases have been reported from Assam since. Out of the 155 cases, 10 people have already died.
In 2002, Goswami formed her own organisation, the Assam Network of Positive People (ANPP) with the aim of building the capacity and skills of people living with the virus and also creating an enabling environment for them in society. "We formed ANPP with the help of Manipur Network of Positive People. Our primary objective is to provide support to all people living with HIV/AIDS in Assam. And to remove discrimination against HIV+ people," says Goswami.
The network now has over 50 members working in different parts of the state. Most of the members are housewives and widows and are not literate. They promote a sense of belonging and offer care and support to people living with HIV/AIDS in Assam . They have also started a drop-in-centre where they provide free counselling and medicinal support to the patients. ANPP also provides referral services and free medical check-ups.
Goswami today visits different parts of the country, talking to people, attending seminars and participating in demonstrations demanding a better life for people with HIV/AIDS. She says she inspires others through her example.
"Until my last breath, I will continue my awareness campaign. As I am living with the virus for the past 10 years, I know how cruel society is to people like us. But I declared my HIV+ status with an aim to help hundreds of others come forward and fight the menace, and also to make the general public more aware. However, I want to live a life with dignity and want the same for all those victimised."
Women’s Feature Service, March 2005