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'Diamond' women lead positive lives

Oct 25, 2009

Policymakers, strategists and activists have increasingly acknowledged the role of HIV Positive women in the fight against the dreaded disease. Susan Paxton’s new book, Diamonds, has testimonies of such women from as distant a place as Papua New Guinea, Sri Lanka, India, Vietnam and more. Ranjita Biswas reviews the book.

"I had a hospital appointment and [my mother-in-law] asked me why and I told her that I also had HIV. The moment I told her this, she changed and became very mean. My eldest sister-in-law claimed that I gave HIV to Amarjit [my husband] and I had killed him." – Kirenjit Kaur, Malaysia.

"From the beginning of our marriage my husband was continually sick. He had constant diarrhoea and we could not understand why. We were living with my parents and they began to suspect that he might have HIV. They asked us to do a blood test. The test results [showed] we were both HIV-positive. I was in shock." –  Pheng Pharozin, Cambodia.

These are snippets from the testimonies of 11 HIV+ women, between the ages 13 and 50, that feature in the recently-released book, Diamonds, by Australian Susan Paxton, an HIV+ person, who is also the director of Positive Response, an independent HIV/AIDS consultancy.

The 114-page book has been sponsored by UNIFEM, East Asia, and UNAIDS and it records women's voices from countries like Papua New Guinea, the Philippines, Sri Lanka, Indonesia, Cambodia, India, Thailand, China, Malaysia and Vietnam.

No real fault of theirs

Of course, these women got infected due to no real fault of theirs: Some through their partners, or in the case of 13-year-old Saranya from India through MTCT (Mother To Child Transmission).

Talking about the women in her book, Paxton, whose activism has stemmed from the discovery of her own Positive status some years back, reveals: "I have witnessed many of these women blossom over the last few years. I wanted to document their life stories to challenge discriminatory attitudes... and inspire more women living with HIV to speak out."

By talking frankly about their situation, Kirenjit and Pharozin and others have brought to the fore a problem that is being faced by many women today. "It's important to talk about [being Positive] in public," says Kirenjit.

Coming from a family in Punjab now settled in Malaysia, Kirenjit was married at the age of 17. She contracted the disease from her husband, Amarjit. Once her status was revealed her in-laws threw her out of the house and she had to return to her parents. "I shared my room with my sister and I would cry silently every night, not wanting my family to hear me. I had lots of dreams of Amarjit [my late husband] and I could feel him next to me for years," she recalls.

Positive role

Policymakers, strategists and activists have increasingly acknowledged the role of Positive women in the fight against HIV/AIDS. "As the world witnesses a sharp increase in the number of women and girls living with HIV, women leaders, like those telling their stories in this publication, need to be heard," believes Jean D'Cunha, Regional Programme Director, UNIFEM regional office, Bangkok. D'Cunha observes that these stories "foreground the link between gender-based discrimination, violence and HIV/AIDS."

Take the case of Chengli from China. When she was a child, her mother and she were regularly beaten up by the father. At 16 she met a boy who introduced her to heroin and turned her into an addict. She eventually got married to him.

In a bid to quit Chengli repeatedly went into rehab only to relapse again and again. It was only after her divorce and daughter's marriage that she discovered that she was HIV positive. Not one to give up on life, today, this brave Chinese woman has married once again and is involved in projects looking at care of children affected by AIDS in Kunming.

Infected women in Asia

According to J.V.R. Prasada Rao, Director, UNAIDS Regional Support Team for Asia and the Pacific, there are an estimated 15 million women in Asia infected through their partners and there is an urgent need to give support to these women. Figures show that (Reports of the Commission on AIDS in Asia, 2008) although three-out-of-four adults living in Asia are men, the proportion of women living with HIV has risen steadily - from 19% in 2000 to 24% in 2007.

Moreover, men engaging in paid sex form the biggest population group infected with HIV, with an estimated 50 million women being wives of these high-risk men (AIDS Commission of Asia, 2007). It is in this context that the voices of Positive women, their needs and, importantly, their views form an important dialogue in empowering the women to deal with the disease.

Despite many of the stories being despairing, 'Diamonds' is not a negative or disheartening book. On the contrary, it is very optimistic, as it tracks the journeys of these courageous women moving from despair to hope by fighting back and living a full life today. Kirenjit, who admits to even attempting suicide at one point, is now an activist working as an administrative officer with Asia Pacific Council of AIDS Service Organisations (APCASO).

She lobbies for the rights of Positive women in her country and encourages them to come out, be better informed and take advantage of facilities available for their healthcare. "Every day, since I discovered I had HIV, has been a struggle. But I want to send the right message - 'Look at us! It has been difficult but we are living a healthy life'," she states.

Meaningful involvement

Huynh Nhu Thanh of Vietnam, who contracted the virus because of drug abuse, is one of the first activists in the movement advocating meaningful involvement of People Living with HIV/AIDS (PLHIV) in Vietnam. When her husband died, she was left alone with her undernourished son. Ostracised by neighbours, she brought him up with the help of her mother. Today, she is the Executive Board Member of the Vietnam National Network of PLHIV and Vietnam Positive Women's Network and is happily married. "I am lucky that my peers trust me and help me to continue my work. I am grateful to the Positive community for believing in me and supporting me in my job," she says.

Pharozin, who contacted the disease from her husband, works as the coordinator of the Cambodian Community of Women Living with HIV/AIDS (CCW). "People working in the HIV sector think that [we] have low education. This motivated me to show them that Positive people can be educated," she says. She continued with her higher education and refused to marry a second time. "I do not need another husband. It was a terribly painful period and I live in fear of having to face it again. To live alone with my parents and my daughter is good enough. I am happy once again," she says.

Adds young Saranaya, "I like school and I do well in all my subjects." She remembers meeting the former President of India, Dr A.P.J. Abdul Kalam during a National Consultation for Children living with HIV in Delhi in 2006. "He blessed me," she recalls happily.

The author sums up her subjects best: "Each woman has overcome incredible challenges to become a strong leader, advocate and be a role model for other HIV-Positive women. These women are like diamonds, formed under immense pressure, hewn from the darkness to shine as the strongest and most brilliant of all gems."

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