Abdul, Elena, and Tryson
On a bright, sunny day I made my way to Mpemba. This is an area just outside of Blantyre, the city I live in and where Kingdom Workers Malawi is headquartered. Although not far from Blantyre, the area feels very rural.
We turned off the main paved road onto a bumpy dirt track winding through plots of corn interspersed with village homes. As we drove, I thought about how beautiful this country is, and I felt grateful to the people I was about to meet for being willing to share their stories.
Instead of meeting at the church, we met at Pastor Matengula’s house. I found this a little strange, but soon appreciated the wisdom of my coworker and the Pastor for setting up the interviews this way. Pastor Matengula’s home was much more private than the church. And for Tryson, Abdul, and Elena, the ability to come and go without drawing much attention is sometimes the difference between life and death. This is because Tryson, Abdul, and Elena all live with albinism.
Life for these three individuals isn’t just difficult, it’s dangerous. Malawians living with albinism, a genetic condition that causes partial or total loss of pigmentation, must not only seek protection from the harsh sun, but also from those who wish to do them harm.
“If you hear us calling out for help in the night, come running.”
At 30 years old, Tryson Mtengula is devoting his time to defend and protect those with albinism in his community. Growing up, he had the blessing of caring, supportive parents and several other family members with albinism. His parents told him he was no different from other children. Tryson laughed as he recounted that he got no special treatment, meaning he went to work in the fields like all his other siblings.
Tryson discusses some of the challenges of living with albinism in Malawi.
The support he received as a young child gave Tryson the confidence to educate his community years later when he faced discrimination. Tryson went to the village chief and together they organized a community-
wide meeting to educate for change.
Tryson spoke to his neighbors and law enforcement about the unique needs and challenges people with albinism face. He encouraged the community to come together in support of them. “If you hear us calling out for help in the night,” he told everyone, “come running.”
I watched Fatima nervously as Tryson shared his story. She doesn’t have albinism, but the adorable baby in her lap does. Fatima has heard stories about people with albinism being kidnapped and murdered because some believe their bones have medicinal purposes.
Twenty-year-old Abdul Sladge echoes Tryson and Fatima’s concerns about protection. “We live in fear,” he says. There are prevailing myths that people with albinism are dishonest and because of this, “People don’t give us a chance.” But as harmful as people’s perceptions are, UV rays from the sun are a constant, unrelenting threat.
“People don't give us a chance.”
Abdul grew up near Lake Malawi, playing among the white sands and glittering water. Idyllic for some, but a nightmare for Abdul’s sensitive skin. His parents feared for the health of their son and eventually sent him to live with relatives in Mpemba, near Blantyre.
It was there that Abdul heard of a program run by a local church for people with disabilities.
He learned that he could receive sunscreen, something not easy to obtain in Malawi. Abdul joined the disability ministry initially to receive sunscreen but also decided to become a volunteer. He now assists others with albinism, giving practical advice on how to protect their skin.
Abdul works with a program participant in the disability ministry.
Sunscreen and friendship are blessings for Abdul. But, even more valuable, Abdul has gained a relationship with Jesus. Before hearing about the program, Abdul was Muslim. Now he’s a Christian and in confirmation classes at St. Nathaniel Lutheran Church (LCCA).
As I listened to Abdul and Tryson speak about their daily fears and challenges, I noticed Fatima hold her daughter Elena closer. As the mother of a child with albinism, Fatima worries deeply about Elena’s future and her safety. Watching Elena happily look around and fiddle with her mother’s necklace, it’s hard to believe she has already received unkind comments from neighbors.
Since sun exposure is hazardous for Elena, Fatima often has difficulty finding work. On sunny days, they don’t leave the house. But her worries about the sun pale in comparison to the fear that her daughter could be taken from her. “I never let her out of my arms,” she says.
The challenges people with albinism face are not easy ones. But change is evident, one small step at a time. Sunscreen and hats are available through the help of the disability ministry. Brave men like Tryson use their experience and position to speak to communities and change perceptions. Volunteers like Abdul make sure that newcomers to the disability ministry feel welcomed.
Alone, this kind of change would not be possible, but together we are working to ensure children like Elena grow up without fear, knowing they are loved and accepted by their community and by God.
Liana Tyrrell is the Malawi Field Manager for Kingdom Workers. Liana and her husband love living in and raising their three children in Malawi. In addition to her work with Kingdom Workers, Liana is working toward a Masters degree in Public Health and enjoys applying her studies toward her work in Malawi.