Kisa: Understanding HIV Through Storytelling

Rural roads in the villages outside Karatu

BY ALEXANDRA BARRAS

Rural roads in the villages outside Karatu
Rural roads in the villages outside Karatu

It is another misty morning in Karatu, a northern speck on the map of Tanzania in East Africa. As an HIV/AIDS outreach officer employed by a non-governmental organization, my client was an entire community, and my duties range from providing medical advice to running education programs . The church where I am stationed this month is home to the unforgettable individual known only as Mama. Mama and I have been working together to deliver ART medications and medical advice to those people known to be infected with HIV along the countryside around Karatu. HIV medication is free in Tanzania, but getting to it often involves an expensive, day-long trip. My first day visiting homes was grueling and I was unprepared for the 8 hours of walking that was required to visit all the individuals who needed their medicine. It was unfathomable that when I left, Mama would continue to deliver the medications by herself. I am sure she was over the age of 60.

The format of each home visit is the same. We take a bus to the end of the line, even further into the middle of nowhere than Karatu. We travel for an hour between dwellings through the countryside. About 10 minutes before we arrive at the house, Mama gives us a brief on the individual. We arrive. We exchange greetings and chai. We talk. I ask questions. They ask questions. Placido translates. Mama gives them their medicine. We leave. While it is guaranteed that this occurs at each house, what differ drastically between each house are the stories. Some are open with their illness. Some live in exile. Some are hiding their status. Truthfully, the only thing they have in common is that they have been infected.

A Maasai village just outside Karatu
A Maasai village just outside Karatu

Today we begin at the home of Petro. Petro and his family of 12 live in the house of Bibi, his grandmother. Immediately, I am given a baby to hold and am being pulled every which way by tiny hands. I am lead inside the two room mud hut by Bibi and given chai. There is barely room for the five of us, let alone the 13 that live there. We converse, but we are careful to avoid the subject of the virus. Petro’s family does not know he has HIV. In the 20 minutes I am there, I feel as if I become part of their family. I wave goodbye to the children and embrace Bibi. Petro sees us off their property and when we reach the gate, we give him his medication. His family believes we have visited him and given him medication for an eye condition. If they ever found out he had HIV, he is certain that he would be segregated and removed from the community and his family.

The next notable stop of the day is a young girl’s home. Her name is Naima, and she lives with her relatives in a home that is in amazing juxtaposition with any of the others I have seen that day. It is very Western and the family owns a car and modern furniture. Naima’s aunt fills us in on her story from the comfort of the plush couches. Her mother passed away and she is so angry about it that she has resolved to try to spread her HIV to as many people as possible. She is doing this to get revenge on the family of the person who infected her mother.

This vendetta is shockingly common in Tanzania. At the tender age of 13, Naima enters the room with the face and body of a girl but the arrogance and swagger of a teenager. She eyes up Placido and it is obvious she is no longer a child. I begin my conversation with her, but I know she is not listening to the white girl who is trying to get to know her. I move to sit next to her and hold her hand. We tell her she is so lucky to be alive, that she is smart and beautiful and could use her gifts to help people. Finally, I look at her and ask her if her mother would be proud. Naima hangs her head and I tell her by spreading the virus she is only increasing the possibility that someone she loves will also contract it. She looks at her aunt with tears in her eyes and I know that no more needs to be said. As Mama gives Naima’s aunt her medication, I hope that something I said has gotten through to her today.

I spent my four months in Tanzania teaching virology, debunking myths and learning about what makes this virus so hard to fight. I have listened to the stories of secondary school students in downtown Dar, Maasai tribeswomen in Lake Manyara, and farmers in Ngorogoro. The biological and social factors surrounding the virus are challenging—this we already know. What I believe is more challenging is the attitude we have towards it. Regardless of whether I was talking about the disease in East Africa or Toronto, stigma and fear was rampant. There is much that the general public does not know about HIV. While education is necessary, it is not sufficient. I never understood why the fear of preventable HIV was so much greater than malaria when the circumstances surrounding contraction of malaria were sometimes inevitable. HIV is an illness that can either be eradicated in a generation, or be a destroyer of one.

I have seen this first hand in Maasailand. I discovered that the key part of my job was to get the conversation going. The stories of people like Naima are so important because they tell us more about the Human Immunodeficiency virus than any education program. I found that the greatest stories and resulting changes in attitude came from open and honest discussion and creating relationships centered on trust. These relationships between public health workers and the community are the catalyst in getting the community to thirst for the truth, to think critically, to ask questions, and ultimately to work to build a better future.

Alexandra is currently a MPH Global Health student at the University of Alberta
Alexandra is currently a MPH Global Health student at the University of Alberta
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