a glacier

I spent a recent afternoon in Kawempe. It is a neighborhood located on Mulago Hill - in the heart of Kampala and on the doorstop of the city’s main hospital. Community members call the area a “slum” - this is not a word you hear often in Kampala. After an afternoon in Kawempe, I would agree that the area is worthy of the term.

Our first stop in Kawempe was the home of a woman by the name of Tina*. Among other things Tina is a drama group member, a community counselor and a multi-purpose trainer. In the simplest terms, she is a very active member of the community. Tina does not live more comfortably nor has she been spared any of the suffering that fills the neighborhood. She is simply determined, like many others, to do what she can amidst the hardships.

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While I stood on the mud pile that constituted a “doorstep” Tina slipped into a neighboring house through the cloth that hung in the form a door. As she did this I glimpsed a woman lying inside on the cement floor. I worried if something was wrong - was this woman ill, did she need to be taken to the hospital?

A moment later I was warmly welcomed into Elysia’s home - a dark, damp room. There was a cushion-less sofa in the “sitting room;” the rest of the room/house lay hidden behind a sheet hung from the ceiling. Boxes, jerry cans and stray objects covered the floor and filled much of room’s perimeter. Elysia was not ill but she was suffering.

As we chatted Elysia sat on the floor, her five children huddled close by. The oldest looked to be about seven and the youngest still young enough to suckle on Elysia’s limp breast. Tina explained to me that Elysia and her husband are a discordant couple – Elysia is HIV negative and her husband is HIV positive. The fact that Elysia struggles to feed and clothe her five children was visible. One of the boys sat naked as we spoke. I was told that none of the children are able to attend school. Elysia has no way to support herself and her children, aside from the little that her husband occasionally provides. Her husband comes and goes – he will often leave for 2 weeks, 3 weeks, even 4 weeks at a time. When he returns he throws 1,000 shillings at Elysia to feed the children with. He is often violent. He quarrels with Elysia all night long now. “Quarrelling all night” is another way of saying that he asks for sex and when she refuses he insists. He refuses to use a condom despite the fact that he knows that he is HIV positive and she is negative. Elysia tested negative one year ago – there is no guarantee that she is still HIV negative.

As desperate as this situation seems, I was told that it is an improvement. Initially the husband insisted that Elysia and the children leave his home. He asserted something along the lines of: “I am a waste. I cannot take care of you.” With counseling from community members, he was eventually convinced to stay with his family. However, according to Tina, his strategy now is to starve Elysia and the children. He provides very little and insists that it is enough.

As we spoke, a man entered the home. Without hesitation he sat amongst us. This was Elysia’s husband. He looked healthy and well dressed – he even wore a gold watch. As his wife struggles and his children go hungry, he is clearly well taken care of.

I left the house wondering: what would tonight be like in this home? Is Elysia’s heart heavy with dread every time her husband walks through the door? Does she hope that maybe this time will be different? How can it be that it is best for Elysia to stay with her husband despite the little that he gives her and the constant risk of HIV infection? What does this man need? What would convince him that he is not a waste; that he can live; that he must not only live but also give his wife and children a life? I slipped out past the curtain with a heavy heart.

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Back at home that evening, my friend asked me: if people in Kawempe could have anything, what is it that they need? I had no response for him. I was reminded of the analogy I often hear – HIV/AIDS is like a glacier; the disease’s causes and effects extend far beyond what is initially apparent. Remarkably, it is not illness that the people I met are suffering from. Although many are infected with and all are undeniably affected by HIV/AIDS it is not better health services that they need. (This may be because they live within meters of one of the largest HIV/AIDS service providers in the country).
If not health services, what is it that would make their life better? The opportunity to not live in impoverished conditions, the means to feed their children, the possibility to send their children to school; the freedom to control if and how they are infected with HIV; the luxury to live free of the economic and the emotional devastation of HIV/AIDS.

*I changed all names.