The brave new face of AIDS

Lucy Khumlo, 32, symbolises the brave new face of HIV-AIDS in Manipur. Spouse of an Intravenous Drug User (IDU) and HIV positive herself, Lucy and many of her ilk have decided to go public about their status and create awareness on how married women in monogamous relationships are the new visage of the epidemic.

Providing succour to each other/ Photo credit: Tehelka

She still recalls the day when she decided that she had had enough. Attired in her Sunday best, she had gone to the village church with her three kids. It was the first time she had come out after her husband died of AIDS in 2003.

It was a revolting experience for her when she heard her neighbours pass snide remarks and was left to sit all alone on the bench in her village church.

Life was difficult for the young HIV-positive widow from Manipur’s remote Chandel district. Lucy had acquired the virus from her spouse, who was an IDU. She had already been going through the taunts of her in-laws after her husband died.

It only became worse after she disclosed her HIV status. They blamed her for infecting their son.

Lucy was a student of class ten and only 18 when she got married. It was a love marriage. Only later did she get to know that her husband was an IDU.

Her 11-year-old daughter, HIV-positive and shunned by her friends when she went out to play with them added to her agony.

A brave front

It was then Lucy came in touch with the women’s wing of the Imphal-based Manipur Network of Positive People (MNP+). She started working for MNP+ as a peer educator and is now the Vice-President of Chandel Network of Positive People.

“I decided to go public about my status and educate other women like me. I am very happy now as I feel I am doing something meaningful,” she says putting up a brave front.

This increasing ‘feminisation of the epidemic’ was also highlighted at a series of collaborative meetings between representatives of Kenya, Mexico and India organised by International Women’s Media Foundation (IWMF), the Centre for Development and Population Activities (CEDPA) and The Center for Women Policy Studies (CWPS) held in Washington DC in June this year.

Lucy is now an active member of MNP+, set up in 1997 by five IDUs and initiated as a self-help group where they can share their problems.

High risk zone

The main source of AIDS in Manipur had been the IDUs and their ‘needle-sharing’ practice. This is due to the easy availability of drugs as Manipur happens to be the transit route for narcotic drugs like heroin and marijuana because of its close proximity to the “Golden Triangle”, that is, Thailand, Laos and Myanmar.

IDUs kicked off a fashion among the unemployed youths in this insurgency-ravaged state.

In fact, out of the 8 million IDUs in the world, as many as 20,000 are in Manipur and these drug users transmit the virus to their partners through sexual intercourse.

The NACO’s sentient surveillance data, which is considered more scientific, estimates that HIV infection in antenatal women (placed in Group 1, the highest risk category of HIV prevalence) crossed 3% in Manipur.

According to the latest epidemiological survey by the Manipur State AIDS Control Society (September 1986 to April 2003), 15,166 out of a total of 95,734 blood samples screened were HIV-positive.

In a state which has an area of 22,327 sq km and a population of around 2.3 million (2001 census), this is the highest concentration of HIV/AIDS infection in India.

And the new face of HIV/AIDS in Manipur are the spouses of IDUs, most of them widows. They have taken up advocacy roles to generate awareness about the stigma and discrimination which confronts HIV-AIDS today.

Spouse discrimination

Udita Salam, general secretary of MNP+, also an IDU spouse argues, “Women are always at the receiving end. Being an IDU spouse adds to the stigma.”

Udita explains that it invariably happens that men, when they are sick get all the attention, care and nutrition. And after the husband dies, the wife is blamed for the husband’s HIV status.

She is driven out by her in-laws, forfeiting her property rights in the process. And if he happens to fall sick, there’s nobody to take care of her.

The spouses of IDUs, HIV positive themselves and left with nothing, have been empowered by MNP+. Most of them are young widows in the age group of 16 to 25 years.

Since the first HIV case, which was reported in Manipur in 1992, most husbands have died and later widows have tested positive. Of the 1600 members of MNP+, over 700 are women. Nearly 98 percent of them got it from their husbands.

“Most of the time these women are ignorant of the husband’s IDU status. It invariably happens that these spoilt men are married off by their family members so that they become responsible householders. The women later end up being homeless as they do not get property rights. There are no caregivers for women,” adds Udita.

Udita, 40, a graduate from Imphal got married to an IDU in 1989. “He was very handsome. I thought I could change his behaviour and his life but post marriage, this seemed a tall order.

"When my son died in 1997 at three and half months, my positive status was confirmed. It was then that my husband told me that he was HIV positive,” she says.

She then got in touch with MNP+. “My husband was already a member. I worked as field worker, counselor and an executive board member. I am good at counseling and negotiating. I do not face discrimination because my husband is still alive,” she quips.

Facing stigma

But it was not all that easy for Pramo Ningombam, 42, from Thoubal district of Manipur. Also an IDU spouse, her husband died in 1998. She was confirmed HIV positive in 1995 when her six year-old son died after testing positive.

“I was pregnant at that time. There was no counseling. I knew I would die soon. The doctor advised me to go for hospital delivery. The nurses did not want to draw blood or provide nursing care,” she remembers.

During the delivery of her child, the nurses did not want to touch her. She had to wash herself clean all on her own.

As a widow, she had to face the same stigma and discrimination.

She came in contact with MNP+ in 2004, first worked as a peer educator in Thoubal district by setting up a self-help group in 2006, worked as a counselor for a drop-in centre for care and support of PLHA (People Living With HIV /AIDS) and is now working as a project coordinator with MNP+.

Her only dream remains to carve out a good life for her school-going 13-year-old daughter, fortunately untouched by the virus.

This group of bold women at MNP+ has set an example of endurance. Sitting quietly in a corner is 32-year-old Roshni Nongmeithem, busy making red ribbon badges. She seems resigned to her fate. Also an IDU spouse, her husband died in 2006. But fortunately, she has an understanding mother-in-law who has accepted her despite being infected with the virus.

Perhaps, the most inspiring of the whole lot of valiant women is Anita Sougaijam, also an IDU spouse but HIV negative herself.

She says, “I was associated with MNP+ since the very beginning when my husband was alive. We encourage the women to come out. Though I am negative, I think I am positive as I have a positive outlook.”