Power of Positive stories

“Every day — since I got to know that I had been infected by my husband — has been a mental struggle. But I have learnt to live with it and move on,” says Kirenjit Kaur, Malaysia.

“When my husband died (of AIDS) I felt that I was weak, but within a few months I became strong again. People working in the HIV sector think we have low education. So I wanted to show them that we can be informed and strong,” says Pharozin from Cambodia.

These are women’s voices that were rare even a few years ago, more particularly in the Asia-Pacific region. It has been well-recorded that women suffer more from stigma and discrimination than men who are HIV Positive.

Women’s poor negotiating power in sexual relationships due to social norms, combined with their low economic status, is one of the contributing factors to the increase in the number of  women getting infected, experts observe, resulting in the ‘feminisation of AIDS’.

Of the 30 million people living with the disease (UNAIDS & WHO, 2007), half of them are women. UNAIDS says that an estimated 50 million women in Asia are at risk of  becoming  infected with HIV from their intimate partners — either spouses or long-term live-in partners — who indulge in high-risk behaviour.

Hear us out

However, on a positive note, at this year’s 9th International Congress on AIDS in Asia and the Pacific (ICAAP9) in Bali, there were multiple voices — from HIV Positive women, activists, community leaders — who focused on the place of women in the HIV map and their problems.

What is more encouraging is that more HIV Positive women are coming out and taking a lead in this campaign.

Kirenjit Kaur is now administrative officer, APCASO (Asia Pacific Council of AIDS Service Organisations). Her story, as well as Pharozin’s, is among 11 stories compiled in a publication, Diamonds, a joint effort by UNIFEM and APN+ (Asia Pacific Network of People living with HIV/AIDS) which was launched at the Bali conference.

“I have a purpose in life now. It makes my life worth living,” says Kirenjit, who works with fellow Positive women going beyond her official job.

From an innocent 17-year-old  whose marriage was arranged by parents (her family is originally from Punjab) and who got thrown out from her marital home when her husband died of AIDS-related complications, she has become an activist.

She questions why in her country PLHIV (People Living with HIV) do not have access to health insurance or accident insurance. “We need to make noise, tell positive stories, not sad ones. It’s time we do not project ourselves as victims,” she asserts.

Stories that heal

Coming out of victimhood can inspire others too. This helps ensure better access to healthcare. The catalyst can even be creative writing or singing and writing songs. One such effort is a “writing project” in Indonesia. Shanti of the Ikatan Perempuan Positif Indonesia (IPPI) talks about this innovative programme in her country facilitated by UNAIDS.

Thirty Positive women from 10 provinces took part in  a workshop on creative writing. It was mentored by some of Indonesia’s leading women writers like Dewi Lestari, Oka Rusmini, Djenar Maesa Ayu, Ayu Utami and Nukila Amal. The women could write anything that concerned their lives.

The mentors then helped them to edit their copies. Eleven best stories by 10 writers were chosen  and compiled into a book Aku Kartini Bernwaya Sembilan, which translates into I am Karini with Nine Lives, with a print run of  1,000 copies. These were  sold in popular bookstalls. All the writers received royalty.

 “HIV is not a barrier to be productive and creative,” Shanti feels. The project’s other aim was to make other people feel encouraged enough to express themselves as they emerged from a state of denial and silence. “Lack of information on the disease is a big problem in our country. A fictionalised account by Positive women may break the barrier for many,” Shanti says.  

Perhaps their stories would be translated one day into English and reach a wider readership, she hopes.

Songs in the Blood is another creative effort but as a radio play. A Women’s Health Statewide of Australia project, it tells the stories of 14 women, both infected and affected as a family member of a Positive person, and highlights the problems women face.

Writer Mansutti  has woven together the stories aired by Radio Adelaide into a powerful plea for understanding the impact of HIV on women in diverse ways. One of the voices in the play: “I was astounded at the impact of our words to educate and demystify the stereotypical image of who is living with HIV in Australia. We women are now visible.”

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