The National Community of Women Living with HIV/AIDS (NACWOLA) in Uganda was founded in 1992 to be of service to women and children infected or affected by HIV and AIDS.
Over the years NACWOLA grew from just a drama group, drawing more and more women, reaching more and more families. Florence Baluba the director of NACWOLA and group members Justine, Gertrude and Janifa let me spend a day with them in Kampala listen to their stories so I could pass them along. Because as Florence told me, “To let people know we are human beings too.”
Stigmatization of persons with HIV in Uganda is still prevalent. Janifa, Gertrude and Justine have been shunned by both their family and their husbands’ families. Each woman comes to the center regularly. First they came seeking refuge, love and support – now they are each giving back; supporting others, the newly diagnosed, struggling women and their families.
I also met three young people at the center. Each teen has a parent or other close family member who is HIV positive. I do not show their faces because they are running – essentially – an underground condom distribution ring.
I asked them when they became activists. All three laughed – and told me they didn’t even think of themselves as activists – they just do what they need to do. Which is true for NACWOLA as well – they simply do what they need to do because in Uganda stigma against those with HIV is alive and well.
Janifa has three teenage children all HIV negative. She only got tested after hearing a “testing mandate” on the radio in 1998. She burst into tears when she found out she was positive. She was scared to get treatment because of what people will think – how will they treat her children knowing she is positive. She buried her husband in 2004 – he had been the source of the infection. He spent the last days on his “death bed” repenting. Janifa forgave him.
Gertrude’s husband had three wives. She has six children ranging from 27 to 15-years-old. Her youngest is HIV positive; they found out after her husband died of the disease. Gertrude was inconsolable. She isolated and cried. She wasn’t able to work and then her in-laws “suggested she vacate” the family home with her children. The family she said wanted her husband’s land. The family beat her until she finally left. She came to NACWOLA through a social service referral program. NACWOLA gave her capital to start a small craft business. She has been living a productive life with HIV for over 15 years
Florence sits behind her desk infrequently as she is constantly working in the community or traveling to get the word out about NACWOLA and the continuing crisis of HIV/AIDS among women in Uganda. Not just because these women are infected but because they are treated as second class citizens especially after diagnosis. Even though most women contract the virus in the marriage bed from a polygamous or cheating husband.
Keith, Sharifah and Eve don’t consider themselves activists when they help distribute condoms to sexually active peers. They just do “what has to be done.” Each teen has a mother or other close female relative who are members of the NACWOLA community. The three are all part of a NACWOLA Youth Group.
Justine found out she was HIV positive in 2008. She started feeling feverish and within days she was in the hospital. She has a 10-year-old son who is HIV negative. Justine cries when she talks about her son’s father. He infected her, left her and then tried to get custody of her boy. NACWOLA helps her fight back against the custody battle. As we spoke she got down on her knees in front of Gertrude and Janifa – she tells me they saved her life.
Justine attributes her life to Janifa and Gertrude by bringing her into NACWOLA through the drama group. When I asked for a portrait of the three women together, Justine knelt down – just as she had during our interview – out of deep love and gratitude to the two women at her side.
Andy Kopsa is a freelance investigative reporter based in New York City. Her work has appeared in numerous places including Ms, The Atlantic, Village Voice Media, Mississippi Public Broadcasting and Al Jazeera. She is a 2013 recipient of The Knights Grant for Reporting on Religion in American Public Life through USC Annenberg.
Photo Credit: Andy Kopsa
The post was cross-posted with permission from “Impatient Optimists” Blog of Bill and Melinda Gates Foundation