Feature Writing

By Lilly St. Angelo

Published on an IU class website June 29, 2018

KISORO, UGANDA — Lydia Kidandali smiles as she holds a woman’s baby delivered just a day before at St. Francis Mutolere Hospital. Kidandali, an infant caretaker at the hospital in Kisoro, a small town in southwest Uganda, delivered her own two children at the same place but under unique circumstances.

Kidandali is a member of the Batwa tribe, the smallest and oldest tribe in Uganda. She is also living with HIV. Her husband tested positively just before Kidandali began prenatal care and insisted that she be tested too.

After the test was confirmed, she began taking antiretroviral medications (ARVs) and now lives a relatively normal life as a result. ARVs disrupt the reproduction of the virus and dramatically decrease its impact on the immune system.

“After delivering, the baby was followed up, was tested and was negative,” Kidandali said. Her second child was also negative.

Her story is proof of the progress that has been made in providing health care to the Batwa and an example of the lives that have been changed by it.

Over the past several years, the marginalized tribe has made big leaps in access to basic needs and futures for their children. Nevertheless, poverty, social discrimination and vulnerability still threaten the people who called the region home long before anyone else.

The real Batwa

Most foreigners go to Kisoro for the tourist attractions in Bwindi Forest National Park where mountain gorillas roam and people can pay $100 to go on the “Batwa experience.” This walk takes one through what life used to be like for the Batwa people.

What the tourists don’t see is how the Batwa actually live now that they’ve been expelled from their forest homelands.

Twenty-seven years ago, the Batwa tribe was formally evicted from the forests they had lived in for thousands of years by the Uganda Wildlife Authority (UWA). They received no compensation for their land since they had no legal ownership claims. Since then, they have struggled greatly with poverty and discrimination.

The Batwa people, formerly referred to as a pygmie tribe, were hunters and gatherers in the Bwindi, Mgahinga and Echuya forests of Uganda until the government forced them out in 1991. Other tribes viewed them as animal-like and uncivilized because they kept their traditional lifestyles long after other tribes modernized. This sub-human view of the Batwa was perpetuated as they were forced into modern society and immediately thrown into poverty. Negative stereotypes of Batwas now include stealing, laziness, unintelligence and lack of cleanliness.

Henry Neza is the capacity building director at the United Organization for Batwa Development in Uganda (UOBDU), a community-based organization committed to improving the Batwa’s lives. Neza is of the Tutsi tribe, a tribe that also resides in Rwanda which is just a 15 minute drive from Kisoro. He explained how the other tribes in the area, including his own, think the Batwa are below them.

“They are looking down on [the Batwa] to the extent that we don’t even share food, we don’t even socialize,” Neza said. He is an exception.

The root of it all

The 12 other staff members at UOBDU, a mix of Hutus, Tutsis and Batwa, are also exceptions. The organization works to secure land rights for the Batwa (an issue that affects many other aspects of life),  provide aid for children and adults to go to schools that won’t treat them poorly, and help the Batwa access discrimination-free healthcare at hospitals. They also provide startup tools and seeds for Batwa who have the land on which to farm.

Because of their lack of rights to land, Neza said some Batwa have received land rented for them by charities, but most are squatters on other people’s land for whom they usually farm. The small compensation they receive is far from adequate for providing basic needs such as charcoal for cooking food. Because they have no land rights, they cannot cut down trees for firewood either. Many Batwa eat their food raw.

The Mikingo Batwa Community, one of the 43 Batwa communities in Uganda, sits on land owned by the Muhabura Diocese of the Church of Uganda. Children walk around their small, makeshift slum eating raw potatoes and cabbage. They play with small trinkets and old tires.

Their community chairman, Robert Kabeni, said the church lets them live there for free and has given them the seeds for planting the cabbage and potatoes. The community is happy that they can feed their children.

Alice Nakibuuka, a Batwa and the education director for UOBDU, interpreted the Batwa’s answers in this interview. The nature of the interview was unique in that the people assembled seemed to respond more as a group than as individuals. Certain leaders spoke out a bit more than others, but everyone would regularly add their opinion or answer when asked a question. There was a group of around 20 adults who seemed finish each others sentences as they tag teamed on answers.

Kabeni said community members have odd jobs around the village. They may wash clothes for the rich and do other cheap labor, but they also forage things from trash piles to get what they need to survive.

Lack of rights to land has made it almost impossible for the Batwa to progress either physically or socially, Neza said. It is a barrier to a higher quality of life, and especially, a high quality of health.

Health and HIV in Batwa communities

St. Francis Mutolere Hospital was the first hospital in the Kisoro area to welcome the Batwa with open arms. UOBDU coordinated funding for the Batwa to receive care at the private, non-profit hospital because the government-funded Kisoro Hospital refused to treat the Batwa.

“The beginning was difficult because these were people who never used to go (to the hospital),” public health director Sister Justine Katto said. “So we had to do sensitization about the importance of using modern medicines.”

The Batwas’ unique circumstances had made them especially vulnerable to HIV, as well as diseases normally prevented with immunizations. Before their eviction from the forests, they had used herbal remedies, but once forced to mix with modern society, their children began to die from communicable diseases.

“We started going to them,” Katto said. “We opened outreaches so they didn’t have to travel long distances seeking referral health care services.”

At the outreaches, they provide health education and awareness about medicines, immunizations for children, prenatal care and the role of physicians in modern healthcare. The doctors now prescribe medications, test for HIV and provide counseling. Katto said that visits are once a month and because of them, more and more Batwa come to the hospital when they are ill. Two of the most common reasons for the Batwa to go to the hospital are for prenatal care and for birthing their children.

Kidandali received such care before delivering both her children at St. Francis Mutolere Hospital, her second having to be surgically removed by Cesarian section.

“If you deliver at home, the baby may die. But if you deliver at the hospital, when you are there, you get support,” according to Annet Bagiritimwe, a woman leader of the Mikingo Batwa Community, as interpreted by Alice.

HIV testing and treatment for pregnant mothers is also a reason the Batwa are now going to the hospital. The virus is increasingly present in each of the 43 Batwa communities. According Katto, there is a Batwa living with HIV in each of the communities by now.

Some communities, like the Mikingo Batwa Community, have a much higher prevalence than others. Katto said alcohol abuse is one of the main factors that drives community prevalence rates higher than others, but there are many other causes also.

Neza said HIV prevalence has much to do with the poverty the Batwa face. Young girls sleep with wealthier men because they think the men will help them.

“Because these are poor people, they tend to agree, they tend to accept quickly,” Neza said. This in turn, he said, leads to HIV and pregnancy.

Katto said that the Batwa’s mobile lifestyle also is a factor that increases HIV’s capacity to spread. Batwa people travel between their 43 communities and have multiple sex partners. This concurrency of relationships facilitates the spread of the virus. Their mobility also makes delivery of their ARVs difficult.

“When you go to look for them the following month thinking they are still there, they will tell you they have shifted to another place,” Katto. “You go to another place, they will tell you they have gone back.”

Another challenge that comes with the Batwa’s lack of land and resources is malnutrition. Without a proper diet, Katto said, taking ARVs is unpleasant.

The Batwa’s adherence to ARVs is poor, but increasingly better, according to Katto, who has worked at Mutolere for 20 years and has worked with the Batwa for as long as they’ve been coming to the hospital.

“There has been steady progress,” Katto said.

Peer influence has a large part to play in it. Batwa on ARVs have shown other tribe members that they can live healthy lives and have healthy children if they adhere to their medications.

Their children’s health was at the center of the conversation about HIV in the Mikingo Batwa Community.

“It is very important because when you go to the hospital they test you for HIV/AIDS and if they find you have HIV/AIDS, they can see how they can protect that baby,” Bagiritimwe said, referring to Batwa women’s access to prenatal care at Mutolere.

Although they still have progress to make, accessing testing and treatment is something that the Batwa believe is important to their tribe’s survival.

Fear of the future

Mutolere Hospital has become the main health provider for Kisoro’s Batwa. It is where they feel most comfortable and cared for.

“When we have someone who is sick, we normally take him or her to Mutolere hospital,” Kabeni said. “That’s where we have insurance or support.”

When they go to Kisoro Hospital, they do not get treatment unless a particular woman is there who knows them. Without her intervention, the doctors refuse to see the Batwa.

Their healthcare status may change soon, however. CARE International Uganda, the international donor agency that underwrote the Batwa’s access to Mutolere for ten years, is running out of money.

“Mutolere Hospital told us that the funds are over so now we are worried. We don’t know where we are going,” Bagiritimwe said. “Maybe if we can get more support, we can continue going to Mutolere Hospital.”

Annet Kandole, technical director at CARE International Uganda, said their funding for Mutolere Hospital will not continue at this time.

“We are still interested in working with the Batwa, but right now, donors are not focused on them,” Kandole said.

Much of CARE’s focus is now on Northern Uganda and the South Sudanese refugees who are fleeing from their unstable homeland and finding refuge in Uganda.

UOBDU will work to get more funding for the Batwa’s healthcare at Mutolere but dependency on foreign aid is frustrating, according to the Batwa.

Although Kandole said the donors were European, the loss in funding gives insight into the true impact of international aid as a whole.

President Trump has proposed to cut the budget of the President’s Emergency Plan For AIDS Relief (PEPFAR) two years in a row but has been unsuccessful so far. But if the budget cuts were approved this year, funding would be slashed by 17 percent. Currently PEPFAR funding makes up 62 percent of the Ugandan government’s spending on HIV treatment and prevention. It is vitally important given that the Ugandan government’s health budget is shrinking each year according to Uganda’s PEPFAR Country Operational Plan.

When funding is lost, real people are affected. This is evident in the Batwa community as people begin to fear that they will be unable to access the health services they need. Their vulnerability originates from their banishment from the forest, but continues with their reliance on foreign aid. Their will to survive is strong though.

As Neza talks about the work that UOBDU has done, he sits at his desk, putting batteries in about 30 mobile phones the organization will distribute to leaders in the Batwa communities. It’s part of an effort to decrease domestic violence. Neza praised the Batwa for their resilience and progress.

“They have started catching up,” Neza said. “They can go to to the hospital, they can go to school, they can farm, they can have animals; they can advocate for themselves.”