Voices Unheard: Maternal Health Challenges Among Uganda’s Batwa Community

In Kanyamahene village, Rubuguru Town Council, Kisoro District, lives 20-year-old Ampeire Genesta and her husband Guma Deus, 22, at their home. The couple had just welcomed their first child 12 days prior to my visit. Both Batwa, they live in a community about 15 km from Rubuguri HC IV, where their baby was born. To reach the health center, one must pay Shillings 20,000 for a boda boda ride, which are uncommon in their high terrain.

_{^{Deus and his wife Ampeire together with their two weeks old baby at their home in Rubuguri}}

The couple cannot afford such expenses, especially for transportation. When Ampeire went into labor, she and her mother began the trek to the hospital, climbing hills for at least two hours. Her husband was away, working in people’s farms planting potatoes. Should a mother fail to walk, good Samaritans carry her on their backs. Deus earns Shillings 5,000 for a day’s work, from 7:00 am to 7:00 pm, which is insufficient to support his young family.

His wife, Ampeire, recounts not having any baby clothes or even a cloth to wrap the baby in. “The nurse asked me where we would wrap the baby, but we did not have anything. So, I asked my mother for her ‘lesu,’ and that’s where the baby was wrapped. I went for antenatal once, and they said my baby was okay, so the next time I went, it was to give birth,” says Ampeire.

^{_{The Batwa Community in Kanyamahende, where Ampeire and Guma live}}

Nyirabafumbira Josephine, a midwife at Rubuguri Health Centre IV, says they register at least 0-3 Batwa mothers monthly for maternal health services. The facility conducts outreaches, mostly addressing immunization and sometimes family planning, which is still frowned upon in the community.

“The community of Batwa has failed to embrace medicine. We receive three or none every month. These also show up unprepared, without any baby clothes or anything to wrap the baby. They are too poor, and those who can afford, do not seem to care. One came here recently for the first time and gave birth the same day. Antenatal is not a service they seek due to their mindset. In their culture, they don’t believe a woman needs a hospital to give birth as their mothers and grandmothers did not use modern medicine,” says Nyirabafumbira.

_{^{Community members attend a burial ceremony of one of their neighbors and elders}}

During a recent outreach, they met two children, a 5-year-old and a 3-year-old, who had never been immunized. “They heard on the megaphone that nurses were passing by, and the mother stopped us. When we asked for the children’s hospital cards, she said they had never been to a hospital. This is a very risky lifestyle that most of them still live.” Nyirabafumbira also noted that most mothers are HIV positive and do not take medicine, risking their children being born with the virus due to the lack of antenatal services. She calls for NGOs to support more outreaches targeting HIV services and maternal health, which are lacking.

Asked why HIV prevalence is high among Batwa communities, Nyirabafumbira cites a culture of incest and alcohol. “When men and women get drunk, they do not pay attention to where they sleep or with whom. Those who are sick do not seek medical attention, and mothers infect their children by giving birth at home.” She believes targeted outreaches focusing on HIV and maternal health are necessary.

_{The Post Delivery room at Rubuguri HC IV}

Childcare Scare

At Micyingo (Kisoro Hill) Batwa Community, I met Nashaba, a mother living with HIV. At age 15, she was only in Primary six when a Mukiga man showed interest in her and later married her with her mother’s approval. Unbeknownst to them, he was HIV positive. Nashaba recounts, “In our culture, when a girl starts developing breasts, she is forced to get married. A mother tells you that you have to leave home and get a husband the moment you develop breasts.”

By age 16, Nashaba was married and soon pregnant. On April 14th, 2018, a 16-year-old Nashaba arrived at Mutorele Hospital in Kisoro to have her first baby. Despite living in town and having sponsors for medical bills, when the midwives read that she was a Mutwa, their attitude changed. “You Batwa and coming to the hospital before it is time for the baby to come. Why do you panic?” they said. Despite her pain, they ignored her until a kind nurse intervened, but it was too late—the baby had died in her womb.

_{Nashaba uses the knowledge she got from school to help her community through translating and making proposals to better their lives}

The next morning, Nashaba’s mother buried the baby, and the young mother was discharged. “I felt like trash, unworthy of life,” she said. Two months into her marriage, Nashaba’s husband began abusing her. She later discovered he had infected her with HIV. Despite giving birth to two children safely, she struggles with the fear of taking ARVs without food.

Nashaba expressed concern over the prevalence of HIV among Batwa communities, attributing it to rape especially in their community where most houses do not have doors and are easily accessed by people with ill intentions.

Domestic Violence

Just two months into the marriage, Nashaba’s husband began abusing her both physically and psychologically. “Every day, he reminded me how I was a nobody that he had picked and helped give a decent life. He beat me up nearly every night. His friends called me a witch and would ask him to chase me away and marry a fellow Mukiga. By the time my pregnancy was eight months, I could not take the beating and I went back to my mother’s place. It is unclear if the beatings by Nashaba’s violent husband caused the death of their child.

Months after their child was buried, the man picked her up, apologized to her and her mother, and she went back to him. He even bought a goat as a fine for abusing “his wife”. Together, they have two children, but the violence did not stop. She later found out that he had infected her with HIV, but both her children are okay as she was able to give birth at health centers where they were safely delivered. Nashaba left her husbands and takes her medicine as instructed by the health worker.

She says that several women in their community are infected with HIV because they live in houses that have no security. “Some of those houses have no doors or windows. The Bakiga men take advantage of that to come in and rape women and girls. That’s why many people have resorted to sleeping in tents that they have pitched outside the houses.”

Nashaba says their biggest worry is that most mothers are unable to take ARVs as instructed due to hunger. They tell us to swallow the medicine after eating, but we do not even have food. For example, I wash clothes for a living and unless I find someone that needs my service, I cannot afford to feed myself and my children. Some families even go days without food, so mothers fear to swallow medicine without eating first.”

_{^{Micyingo Batwa Community hosts over 200 people, including children. Most people left the permanent structures built by the Church of Uganda and pitched tents.}}

A Community in Crisis

At Mushanje, Kashasha, Bufundi Sub county Batwa Community, Rubanda District, I found Mutungirehi Kobwa, a 26-year-old mother of two. Her first child, Moreen, has a swollen stomach and face. Despite giving birth at Rwabahundana HCII, her child has never seen a doctor. The family cannot afford the Shs 20,000 for a boda boda to the hospital.

_{^{The house in which Kobwa lives with her husband and kids along with about four other people}}

As I arrive at their home, Moreen, who looks much younger than her six years, eats a roasted sweet potato she found on the ground. The family’s poverty prevents frequent hospital visits. “Imagine if they refer us to Kabale General Hospital? I need more than Shs 100,000 for transportation alone. What am I supposed to do?” Kobwa wonders. The community, lacking health projects and facing high poverty levels, needs urgent help.

She and her neighbors beg that they need land to cultivate and get some food. They suspect that the cause of the mysterious illness affecting the children in their community is caused by poor eating habits as they feed the children on irish potatoes which they have once a day.

“We are not lazy; we are hardworking men and women without opportunities to own land. We were relocated here by the Church of Uganda, but we weren’t given extra land for cultivation,” says Kobwa. The family works in Bakiga farms and sometimes trespasses into the Echuya forest to collect firewood for sale. Despite their efforts, they often go unpaid.

Calls for Change

Katama Edward, the chairman LC 1 of the area, said they have not had health-related projects in their community since they were relocated there. The only thing they have is a primary school where their children receive an education and free lunch. However, most of these children come home to empty houses and sleep on empty stomachs.

Katama says he has been invited to several district meetings, but he cannot afford to travel such long distances because he lacks money. They have also had meetings with district officials around the community on different occasions and agreed to extend government projects to the Batwa people. However, when the projects come, they are forgotten and never fully implemented.

_{^{Scovia Nyirandikurwimana and Scovia Nyirabiza say they would not hesitate participating in a medical camp or outreach, but such a thing has never happened in their community}}

They are calling for government support and NGOs, especially those dealing in Sexual and Reproductive Health Rights, to help them access services like HIV testing, counseling, and family planning. They also noted a need for pediatric help since several children are affected by the mysterious illness that Moreen is suffering from, and the parents are unable to afford to go to hospitals due to lack of funds and cultural issues.

A local NGO owned by a native Mutwa has been fighting for the rights of the Batwa for over 10 years now. Some of the important changes they want to see include the establishment of specialized health facilities to help deal with illnesses that they are unable to cure with their herbal medicine, as well as government programs like Emyooga and PDM, which they have not benefited from in the past.

Gad Semajeri, the founder of the Batwa Development Organization (BDO), established the organization in 2013 with the hope of helping his community. He established BDO with help from his then-sponsor. His objective was to end the stereotypes about his people and fight for their well-being. The biggest challenge he has faced over the years, however, has been a lack of funding for his projects, as some NGOs owned by non-Batwa have positioned themselves as the only ones advocating for the communities. In some offices, they have managed to push him aside to ensure they do not engage fully.

Gad says they also want political representatives at different levels, from local government to Parliament. He notes that Rwanda has created space for Batwa in the senate, and they expect Uganda to do the same because today, their issues are not well represented at several levels.

_{^{Gad tells me about the need for political representation of the Batwa, especially in Parliament}}

Gad also complained about NGOs using the Batwa for financial aid through funding. He says several NGOs have applied for funding using the challenges facing Batwa communities. He also wants decent housing and land rights that allow them to own plots where they can do some agriculture to end the slavery on Bakiga farms. According to Gad, they have a growing number of Batwa graduates who can help their community.

“Our main objective is to advocate for Batwa human rights through talk shows on different radio stations, where we tell people about the marginalization of the Batwa and how their rights are violated by the government and the local citizens. We started with 13 communities before Kabale and Rubanda were split. Currently, we have 7 communities in Rubanda and the rest remained in Kabale. Over the years, we have been supporting communities in Kabale, Kanungu, Rubanda, Bundibugyo, and Kisoro among others,” said Gad.

The organization has in the past received funding from the World Bank, but it was a general fund for civil society as a whole. He hopes that soon, they may receive independent funding to help them do their work well.

_{^{One of the organizations partnering with Batwa Communities near Echuya forest.}}

Annet Dusabe, the Assistant District Health Officer in charge of maternal child health for Kisoro, says the biggest issue the Batwa communities face is high levels of ignorance. She believes that if more mothers were educated, they would seek health services. She also expressed concern about the high levels of drug abuse and alcohol in the Micyingo community in particular, where she says mothers are drinking heavily, and teenagers are abusing drugs, leading to teenage pregnancy and a rise in HIV rates.

The Assistant DHO says HIV-positive mothers are also not taking medication as prescribed by doctors. Some do not even want to go to hospitals and do not respond to artificial methods of family planning, preferring their natural methods, which has led to a rise in unplanned pregnancies. She further noted that NGOs do not carry out needs assessments before coming up with solutions, which end up being misguided.

However, Penina Zaninka, the Coordinator of the United Organization for Batwa Development in Uganda, says that they have done some health projects in the communities and they were responsive. She added that the problem arises when they go to hospitals and are not treated well, making them regret being pulled out of the forests.

_{^{Zuena, a mother of 4 says she had complications with one of her pregnancies and needed scanning but he was asked to pay 40,000 which she did not have. Thankfully, a friend helped her, but at a different facility}}

Being one of the marginalized communities in Uganda, the Batwa face immense challenges in maternal health due to cultural beliefs, poverty, and lack of access to health services. There is an urgent need for targeted interventions from the government and NGOs to address these issues and improve the lives of the Batwa people, especially mothers and children.

“When they face challenges like not getting medicine or being treated poorly by health workers, they start thinking of using their traditional knowledge and recall the loss of their ancestral land in the forests where they could easily access natural medicinal herbs. Poverty limits them from receiving good modern medical treatment, but their attitude is not bad when they get proper treatment,” said Zaninka.

Being one of the most marginalized groups in Uganda, the Batwa need more attention especially in Sexual and Reproductive Health Rights. There is need for NGOs to carry out needs assessments before deciding on what kind of services to provide for the different communities. Also, mindset change is another thing to consider doing before anyone engages the communities in other changes.

It is my prayer, that the community with sick children may receive urgent help so that they can receive deserved medical treatment. Moreen, and two other children in Mushanje village are suffering in grave danger, if no one comes to their rescue.