The dimly lit roadside stretching from the Ugandan airport in Entebbe to its capital, Kampala is alive with people. Rundown structures teeming with occupants are fronted by an array of beautifully intricate furniture for sale. Elderly women sit in doorways, two per step. Groups of young men are clustered around outdoor pool tables, people barter over cages of live chickens, wooden coffins sit outside structures advertising their wares – coffins of all sizes. A pair of toddlers enveloped in a cloth rock themselves back and forth on a dimly lit porch. A boy chases alongside a metal wheel, hurrying it on with a stick. In the midst of this oddly enchanting chaos, every few metres there is another reminder of the efforts Uganda is making to tackle HIV/AIDS. Numerous health centres offering testing and condom distribution are illuminated in the headlights of the SUV in which I am travelling. A large billboard depicts parents holding their child’s hand and the words “How is your baby? We are taking ours for regular check ups. What are you doing?”. Thirty minutes into my visit to Uganda to investigate the impact of HIV/AIDS and already the war the country is waging against its biggest killer is fully visible.
With a population of 1.9 million people, Kampala is Uganda’s largest city. The national prevalence of the disease today stands at approximately 7.1 per cent, a considerable improvement from the 1980s, when the rate reached 30 per cent at times.
In the Katwe area of the capital, I meet Robinnah, a grandmother of eight. Arriving into her home reminds me so much of the stereotypical Irish granny – a tray arrives laden with all that she can offer; photographs documenting family achievements adorn the walls, and the conversation is so peppered with religious references that a quiz on the priest’s latest sermon does not seem out of the question. The word ‘matriarch’ comes to mind as she tells me with a no-nonsense approach that people who are HIV positive often stigmatise themselves by removing themselves from the community out of shame. I ask her about her life with HIV, her husband’s death as a result of AIDS, the challenges she faces – “I’ve been able to do so many things that even people who are not positive haven’t done. So I don’t see why I would complain,” she says simply.
This defiance, the refusal to be portrayed as a victim, is something I encounter across Kampala. On another day I meet 22-year-old Herman, he tells me that after his father’s death, his uncles told his grandmother not to care for him – that he was as good as dead. She refused to abandon hope for her grandson and Herman survived. With the support of The Aids Support Organisation (TASO), Herman now works in their nursery, caring for young children as their parents go for treatment. Poignantly, this childcare system sees families kept together in cure, rather than separated in sickness, a stereotypical characteristic of the epidemic.
The spread of the disease is not hindered by boundaries in social status, gender or colour. Everyone I speak to is somehow affected, their lives somehow altered as a result of the disease once synonymous with death in Uganda. The doctor I speak to at TASO speaks of close relatives that are sick as a result of HIV/AIDS. Though he says that it is hard for him to balance caregiving and work, he feels the real burden lands squarely on the shoulders of his aged parents. On an A4 sheet over the desk in his office in Mulago hospital is the universally popular mantra: that people will forget what you said but not how you made them feel. TASO encourages people to “live positively” with HIV/AIDS. Herman tells me he is going to become a counsellor, like the people in TASO. He looks me straight in the eye as he tells me that he will show all those who doubted him, someone who is positive is also capable of achieving their goals.
Living positively was something I felt pervaded Ugandan society as a whole. There was more interest in discussing positive topics than negative, of admiring progress rather than condemning failure. Irish people often have a habit of discussing the negative when they get together. It’s a bonding exercise where we agree on the dire nature of situation and contribute anecdotes further illustrating the horror of events. It’s a cultural crime and I consider myself a prime suspect. The Ugandans I encountered didn’t want to talk about the sad stories I had heard and were more interested in hearing whether I thought that AIDS could be eradicated completely. They told me about their favourite places to hang out and tried to persuade me to go clubbing with them.
This positivity extended beyond life to death. People I spoke to who had lost someone to AIDS frequently spoke of a “good death”. Death is packaged in a particular way at home. Undertakers exist behind dark shop fronts with glazed windows, the occasional departing hearse the only indication of what happens within. In Uganda, death is quite visibly a part of life. Coffins of every size sit outside undertakers, including multiple child-sized coffins. One day, as we travel from one location to the next, a truck appears ahead. In the back, a dozen people sit on the sides of the structure, while those in the middle are perched on top of a coffin. “There is a dead person in that box” my driver says eagerly, watching for my reaction, evidently aware of the difference in western culture’s treatment of death. Everyone I spoke to had lost someone to AIDS. People spoke not as much of the concern over dying but rather of having a “good death”. A good death was one with minimal suffering and was short. A bad one had prolonged suffering and often included the loss of the patient’s mental state.
As I left Kampala, headed for remote Karamoja, I passed more signs targeting HIV/AIDS. The further I travelled from the city the more the signs appeared, in local dialects as well as in English. As I passed more clinics I thought back to one moment during my conversation with Robinnah. “I can tell by looking at you [that] you are positive,” she said. She forgot the “if”. For the briefest of moments, I felt fear. Fear for my relationship, for my health, for my family. For me, by virtue of where I come from and my experiences to date, a moment of fear was all it was. One moment in which I truly considered how awful that situation must be. Not everyone is afforded that same luxury, and for many that fear is their reality.
Jane Fallon Griffin, a graduate of Trinity College Dublin, who is currently pursuing an MA in Journalism at Dublin City University, is a recipient of the 2016 Student Scheme. She travelled to Uganda earlier this year to explore the effects of the AIDS crisis on the young and the elderly. She is mentored by Irish Times Foreign Policy Editor, Paddy Smyth and will shortly have her work published in The Irish Times.