Living with HIV

From testing HIV positive to enduring the subsequent stigma and depression, it has been an arduous long trek towards empowerment for Salam Udita, 40, and many other women like her, who suffer from HIV/AIDS.

In 1989, when she was in her second year of graduate studies, Udita married her boyfriend, a drug user, much against the wishes of her family. Her parents and relatives were concerned about her well-being - after all they were part of the many people in Manipur who were awakening to the evils of drugs dependency in the state. Drug users as well as peddlers were publicly humiliated by civil society and women's groups. In fact, some were put behind bars or even shot down by unidentified gunmen.

Six months later, Udita's husband suffered a relapse and the young bride was back at her parental home. The separation stretched over two years during which she completed her graduation and a diploma course in special education in Bhubaneswar, Orissa. It was only in 1991, did she return to her husband's house - after abandoning her B.Ed (Bachelor of Education) course mid-way.

Between 1995 and 1997, Udita bore a daughter and a son. Unfortunately, the boy was a sickly child and diagnosed with bronchial pneumonia in his fourth month. He also tested HIV positive. "Initially, my husband hid the news from me. I thought my son was going to get well. But he died soon after being discharged from hospital. I've lost my child. I have come out in the open so that others don't lose their children," says Udita, currently the joint secretary and board member of the Manipur Network of Positive People (MNP+)

"I never thought HIV would enter our own house. It was only in 1998 that I also checked my status and tested positive," she recalls. A period of anger, depression and denial followed the HIV/AIDS results. "I didn't tell anyone, initially. I think my family suspected but couldn't muster the courage to ask me. Somehow that awkward silence was as hard as the discrimination. I think my family found it more difficult to accept my status than my in-laws did. After I started working actively for MNP+. I simply wasn't bothered about whether or not people knew. I stopped hiding," says Udita. She revealed her positive status to her friends and family only after she began working full-time with MNP+ in 2002.

Being a woman living with HIV/AIDS has its own set of problems, which Udita knows first hand. Patriarchal traditions and social outlook compound such problems. Often when the husband dies, a woman is denied her share of property. AIDS widows more often that not find no shelter - either at the husband's house or in their own home. When they fall ill, many have no caregivers. And if a woman's status is detected after the death of her husband, aspersions are cast on her morality. Similarly, if she dresses up, she is accused of have an affair. However, if unkempt, society does not accord her respect.

Udita elaborates, "I am on anti retroviral treatment (ART) like my husband. I, too, need good nutrition. Unfortunately, many women aren't able to buy food for themselves. Then again, even if they have ample food, women often want to give more to their husband and child. This is something inherent in us. Since I am not bedridden and look hale and hearty, my in-laws sometimes forget I'm ill. They forget that it is their son's fault that I am HIV positive. They expect me to fulfill the traditional roles of a Meitei married woman - caring for them, fetching water, doing the household chores, and so on."

Talking about women living with HIV/AIDS in Manipur, she says, "There are many women who are the sole family breadwinners. In fact, the husband is, instead, an economic burden, demanding money for his drug doses. The wife has to ensure that there is food on the table for the children. Many women, unable to meet this economic burden, take to walking the streets, earning a living as sex workers. In such a situation, the risk of transmission increases. Therefore, to reduce HIV, we need to increase the economic power of women and focus on income-generation programmes. To save Manipur from extinction because of HIV/AIDS, we need to focus on women."

Unlike many other women, Udita has been lucky. Meeting up with the right people encouraged her to come to terms with her infection. She resolved to do something for those suffering from this deadly disease. "In 1998, Ashok Pillai and Geetha Venugopal of the Indian Network of Positive People (INP+) came to Imphal. We got a chance to share our stories with them. There were many of us at the meeting, but very few had come out in the open about their HIV status, though amongst ourselves we knew. After that, whenever MNP+ called us for a programme, we (her husband, she and some other women) would go," she recalls and adds, "What helped me most in accepting my HIV positive status and empowering me was the peer counseling."

The INP+ exposure encouraged Udita to do more. She became a member of MNP+ in 1999. Three years later, she started working actively as a peer educator on a United Nations Office on Drugs and Crime (UNODC) project; and as a field worker for an Action Aid project. In 2003, Udita became a board member of MNP+, the sole network formed and run by people living with HIV/AIDS in the state. (The MNP+ was established in 1997 by five injecting drug users, as a self-help group. Today it has over 1,600 members.)

Udita who was one of three women board members of INP+ - she became one in 2005 - and served in the capacity of national representative of the Asia Pacific Network of Positive People's (APN+) steering committee - she helped establish APN+ during her tenure at INP+ - relinquished her positions this year. Citing her reasons, Udita, who along with others had initiated the formation of APN+ and the women's wing of INP+, says, "I wanted to focus on state-level work. I was also getting weaker. Furthermore, it is important to empower the second line of leaders."

Udita believes that the existing networks haven't completely addressed the issues of women. "It wasn't that the issues were neglected, yet, somehow, things were incomplete. Only women themselves can understand and explore the issue wholly. But to work effectively you need to work in tandem with the men and others. If we are together, we can work better. This is the main belief behind the establishment of the women's forum of the INP+," she explains. (The Women's Asia Pacific Network of People Living with HIV/AIDS (WAPN+) was set up in September 2006 in Bangkok.)

The state-level women forum of MNP+ is in the process of formation. Informs Udita, "We will be working in  coordination with MNP+. Membership is open solely for women infected. Affected women and children are beneficiaries."

According to an epidemiological survey by the Manipur AIDS Control Society (MSACS), October 2007, there are 27,961 HIV + people in the state. Of these, 7,106 are women and 1,362 are children in the age group of 0-10 years.


More by :  Anjulika Thingnam

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