Bringing Out the Issues

After testing positive for HIV and losing her husband to AIDS, Lilly Arach sat day after day in her home in Northern Uganda waiting for an answer or some direction. She had no income and had four children to feed.

Her only solace came from the frequent visits of community women. They were mostly widows who lost their husbands to the devastating civil war or to AIDS.

This impromptu support group offered Lilly comfort, compassion and solace. And, eventually, through sharing their stories of grief and desperation, they inspired each other to take action.

“We decided, ‘why are we seated here always? Why don’t we do something?’ And then we started a drama group. …We started moving to the nearby villages to perform these dramas, dramas on HIV,” she says.

The women’s drama group touched on issues beyond HIV prevention and treatment, such as property rights for widows. In Uganda, many in-laws pressure widows to marry a brother or another male relative of her husband so ownership remains in his family – a situation Lilly experienced firsthand.

As the drama group’s success and popularity grew, Lilly and her fellow organizers registered it as a community-based organization called Kitgum District Forum for People Living with HIV and convened a board of directors. The local government even provided office space.

Though she was active with the drama group, Lilly still was afraid to make her status known publicly. She feared the stigma she and her family would face. But her silence was doing more damage to her health than the virus was.

“There was a fear within me that if I don’t tell people then I will die silently … and that made me go to my parents and tell them,” Lilly explains. “At first they were saying ‘No, no. We don’t want you to go there to tell people that you are HIV-positive.’ Then I told [my mother] … ‘you have to know you’re going to bury me very soon if I don’t go and tell people that I’m HIV-positive.’”

On World AIDS Day, Dec. 1, 2002, Lilly went on the local radio station and disclosed her status. She received both positive and negative reactions to her disclosure, forcing Lilly and her children to learn to cope. Now, they have adjusted. Her eldest daughter even chairs an HIV awareness club at her school.

Shortly after her public announcement, Lilly was asked to join the Kitgum District HIV/AIDS Committee as a peer mentor for people living with HIV (PLHIV). She began to reach out to her peers to raise awareness about HIV, encourage testing, provide counseling, organize groups of PLHIV and reduce stigma.

In July 2007, Lilly attended the Advancing Women’s Leadership and Advocacy for AIDS Action global workshop in Washington, D.C. The workshop greatly improved Lilly’s communication, advocacy and community mobilization skills and she learned how her appearance and mannerisms can enhance (or detract from) message delivery.

“Before I went for the workshop, if I was going to present an issue at the District AIDS committee, I always did so with a lot of anger,” she says. “Now, I would bring out the issue and … present in a meaningful manner, let the issue be smart. Have a goal for the issue … how to present it clearly and smartly.”

Most of all, Lilly became more self-confident. Before the workshop, she succumbed to cultural norms of women’s status being considered low in society’s hierarchy, expected never to take the stage, literally or figuratively.

“Sometimes [when] my supervisor told me I want you to go and represent me in a workshop … I would say … ‘I’m just a mere woman. How can I go and stand before those big people?’ That was the feeling I had within myself,” she says. But now, “I’m somebody who can stand up and talk about what is wrong and the way I feel. I think that is who I am.”

What boosts her confidence even more is Lilly’s growing knowledge and understanding of the facts about HIV and AIDS. Inspired by the workshop, she now makes it a point of reading background information as well as the latest news. As a result, her self-image has shifted from a beneficiary with a personal story to a decision-maker, and even a leader.

Her supervisor affirms Lilly’s noted improvements in her advocacy, communication and leadership skills. Beyond relying on her as a community leader, he now regularly sends her to represent the organization at conferences.

Now, Lilly focuses much of her outreach on women, who are particularly vulnerable to HIV, representing 59 percent of those infected in Uganda. A female adolescent is nine times more likely to contract HIV than one of her male peers. The situation is even more extreme for girls in Kitgum’s camps for internally displaced people, where close quarters and limited privacy expose children to violence and the risks of sexual behavior at a young age.

Lilly continues to encourage women living with HIV to advocate for their rights at every level of government, and to access services that support healthy living. She wants them to see what they can accomplish once their eyes are open to the possibilities.

  What is RSS?