Feature story

Wahidayah shelter shines light on the strength of women living with HIV in Malaysia

28 May 2013

Malaysian AIDS activist Norlela Mokhtar (left) and UNAIDS Deputy Executive Director, Management and Governance, Jan Beagle visiting the Wahidayah shelter. Credit: UNAIDS.

In a quiet street, 40 minutes outside the bustling city centre of Kuala Lumpur, Malaysia, is a house with multi-coloured walls, filled with smiles and laughter. The laughter is coming from the Wahidayah shelter, a refuge for women living with HIV. Established last year by Malaysian AIDS activist Norlela Mokhtar, it provides home—both for short or longer stays—and a network of support for HIV-positive women and their families.

“There was not enough focus on the needs of HIV-positive women in the country, and no means for us to network,” explains Norlela, who has been living with HIV for 13 years. “This shelter gives HIV-positive women a space to rest, recuperate, and get back on our feet. It also allows us to meet other women, learn new skills, and learn about HIV and how we can live better and healthier lives.”

Operating with a small staff of just two volunteers, Norlela and her team welcome women who have tested positive for HIV and who need immediate and more long-term support in accessing treatment, care and support—for themselves as well as for their children. The women arriving to the brightly decorated shelter stay for as little as three days to up to six months. The shelter aims to provide smooth transitions for the women back into their family situations as well as a community network for on-going support.

As in much of Asia, the percentage of women living with HIV in Malaysia is lower than that of men—some 11% in 2012. Nevertheless, the estimated share of women becoming infected compared to men in the country has grown rapidly in the last 10 years—from one in ten in 2000 to one in four in 2011.

We HIV-positive women know best what we need and what to do. Our network and community strength is growing and we need to continue to voice up.

Malaysian AIDS activist Norlela Mokhtar

Norlela believes that women need to be much more informed about the factors that put them at risk. “Many women do not know they are living with HIV until their husbands or partners fall sick, or they fall sick themselves,” she explains. “Women’s knowledge about HIV, and ability to act on that knowledge, is low. At the shelter we try to teach women about our rights, how to negotiate safe sex with husbands and partners and encourage the women to help others to be more aware too.”

Visiting the Shelter, UNAIDS Deputy Executive Director, Management and Governance, Jan Beagle praised the strong community-led ethos of the Wahidayah shelter and its founder. “Norlela is a formidable female force in the country’s AIDS response. Community-led support is absolutely critical for reaching vulnerable and most-at-risk populations, as well as breaking down stigma and discrimination that is still very prevalent,” she said. “The experiences of Norlela and her colleagues also show how in Malaysia—and elsewhere in Asia where epidemics are more concentrated among men—the needs and realities of women and girls must not be forgotten and that there is a real need for more comprehensive sexual and reproductive health and HIV education for young women and men,” Added Ms Beagle.

During the visit, women living with HIV at the shelter discussed openly with Ms Beagle about their experiences of discovering their status, the challenges they face and how working with the shelter is helping them to move forwards with their lives.

“Here we have a voice and we can share our experience with other people without being judged,” said Maya, one of the women staying at the shelter.

For Norlela, hearing such declarations from the Wahidaya women makes her even more motivated to continue championing the cause of women living with HIV. “We HIV-positive women know best what we need and what to do. Our network and community strength is growing and we need to continue to voice up,” she said.

The work of Norela and the Wahidaya shelter is one of the many initiatives and examples of progress being showcased during the 3rd global Women Deliver Congress that takes place in Kuala Lumpur, Malaysia from 28-30 May 2012. The largest global event of the decade to focus on the health and rights of girls and women, the conference brings together more than 300 leaders, policymakers and advocates representing more than 150 countries. Live webcast and archived video of all plenaries and presidential sessions will be available here