'We Too Should thrive':
It's All Delight At Uganda's First 'Albino-Only' Home
Written by: Rhonet Atwiine. Film and Photography: Richard Mugambe, Serina Kirabo, Moses Sserunjogi and Elisha Kizito.
Saturday, December 21, 2024
When Sandra Nakyeyune had a preterm birth at Lacho, a Hospital in Kasana near the central Ugandan town of Luwero, she did not know that she had just embarked on “a journey of stigma and social rejection.”
“Every time I looked at my baby, I saw no difference between him and the others. However, the caregivers kept referring to my baby boy as ‘Mzungu’ which wasn’t the case with the other babies,” she recounts.
Mzungu is a local word used to refer to white people. It was until later while the was baby recapitulating from an infection at the hospital nursery that she realized the child had albinism, a natural condition that leads to someone having very light skin, hair, and eyes attributed to the lack of sufficient melanin in the body.
On return to her community after the postnatal care, neighbors rushed to her home to see “the punishment from God” she was carrying. Also, her partner refused to name the baby, a traditionally-held symbol of paternal identity and a signal of acceptance.
“They referred to my child as a curse … and my husband said that such ‘things’ were not born into his family. I decided to take care of my child,” Nakyeyune explains.
Sandra Nakyeyune plays with her toddler. Photo by Moses Serunjogi.
Nakyeyune and her child, together with dozens of other women and children living with albinism now reside at a local charity-run safe shelter, where they sought refuge from community stigma and other rights violations.
Women and Children with Albinism in Uganda (WACWAU) was started by three women; Doreen Mayanja, Faith Bwanika, and Diana Bakuyita, themselves with albinism and victims of social rejection and stigma.
The duo started by pulling monthly salaries together and began reaching out to children and women with albinism in their communities, offering support and assistance. Their intention is to build a safe and self-sustaining community for people living with the condition.
“We saw the need to bring women and children with albinism close because we are more vulnerable than our male counterparts. We are subjected to various forms of violence in pursuit of wealth,” Bakuyita explains, noting that women living with albinism fall prey to men under the traditional pretext that sexual relationships with them bring wealth.
The movement grew rapidly, prompting many people to trek to their offices, seeking help from community violence. In 2019, they decided to open up a shelter in Wakiso district, about 20 kilometers outside the capital Kampala to house only women and children with the condition.
Doreen Mayanja (Left) takes another woman through the process of soap making. Photo by Serina Kirabo.
In Uganda, people with albinism are prone to multiple human rights violations including mutilation, and harmful practices related to witchcraft and traditional ritual attacks. More than 20,000 persons live with the condition.
Ivan Sewagudde, 15 and two of his young brothers, sought support at the shelter after being targeted by their father. He had been told that the blood of his child would bring him wealth.
“We had to escape from home and seek help here. I have heard he’s passed away, his relatives are still searching for us to fulfill the ritual,” Sewagudde shares.
“Others, such as witch doctors, exploit us to serve as deific figures in shrines. Our nails and hair are demanded for use in rituals within these shrines,” he adds.
Ivan Ssewagudde (middle) and his young brothers fled persecution at home. Photo by Elisha Kizito.
-Self-sustainability-
While at the shelter, the women and children of age are trained in different skills including tailoring, soap-making, sunscreen, farming, and entrepreneurship which helps them to get an income and a means of livelihood.
Their products like soap, sunscreen, garments, and produce are sold to the local market as a revenue stream for the organization. Bakuyita says skills building is helping to empower them and has created economic self-sustainability of the organization and the people.
“There is a critical need to empower mothers of children with albinism, as well as women with albinism themselves. Many of them did not have the opportunity to receive formal education, so they require practical skills. These skills provide them with lifelong abilities to sustain themselves and their families,” Bakuyita explains.
Getrude Nantubwe (Right) and another woman weave baskets using local materials. Photo by Moses Sserunjogi
Getrude Nantumbwe, 52-year-old woman who lives with albinism, has been one of the inaugural participants to benefit from the program.
“ Here, I craft sponges, living room mats, door mats, table mats, and pencil bags, using locally available raw materials such as fibers, elephant grass, and sisal. We also make natural soap, produce lotion, lip bum, and make reusable sanitary towels,” she explains, adding that it is the first period of her life to feel safe, employed and productive.
Whenever products are sold, the makers are also paid off their craft. For Nantumbwe, the earnings have helped her open businesses outside the center.
“When I receive payment, I reinvest the money into other businesses beyond this establishment. Currently, I own a rabbit and pig farm. This has enabled me to achieve self-sufficiency and provide for my family,” Nantubwe says.
Mayanja and her colleagues are also building a people-centered philanthropy system in the community, where every woman who receives assistance at the shelter reaches out to others in the community, particularly teenage mothers with children who have albinism.
They educate them about the condition and offer any necessary information for the well-being of the baby.
“This stems from widespread reluctance among people to associate with them, leading to instances where parents, particularly fathers, abandon albino children,” Mayanja explains that mothers are often left to fend for their families alone.
Hand-made baskets on display. They are crafted by women at the shelter and sold on local market to help them make a living. Photo by Moses Sserunjogi.
Over the past decade, the model has positively affected the lives of about 40 children and women across four regions of the country. Currently, 26 individuals receive support within their communities, while 16 are accommodated on-site.
“I am confident that my child will grow up in an environment where he can survive without segregation and attain full opportunity potential here,” Nakyeyune says.
Aside from providing health and economic assistance, the program has also facilitated the education of 12 children across primary and secondary levels.
Mayanja explains that children with albinism face a denial of their right to education. This stems from both parental attitudes that do not prioritize the education of children with albinism and the discriminatory conditions within schools, which often lead these children to drop out.
As a result, a significant number of children with albinism lack access to education. Therefore, the model aims to fill this gap and provide access to education for children with albinism.
“Among 12 children, 9 children are currently enrolled in primary education, with 3 in secondary education. Furthermore, a majority of these students have successfully progressed to university level,” Mayanja shares.
Diana Bakuyita, the co-founder of Women and Children Living With Albinism in Uganda. Photo by Serina Kirabo.
However, the journey towards inclusivity and empowerment is not without its challenges. The lack of resources and structures poses obstacles to effectively catering to the diverse needs of all children and women.
Despite efforts to create an inclusive environment, the children face resistance from their fellow pupils at school and community members who hold misconceptions about albinism.
Bakuyita emphasizes the ongoing necessity to challenge societal perceptions regarding individuals with albinism.
“We require assistance to nurture the confidence of these children, allowing them to believe in their own capabilities. As long as negative attitudes persist, particularly towards women with albinism, their ability to flourish will remain compromised,” she shares.
They envision a world where albino individuals, particularly women, are empowered and supported to triumph over societal hurdles with dignity.
“I would really love to see a world where women with Albinism are successful and own big enterprises that they desire so that they can live a normal and happy life that everyone desires.” Bakuyita concludes.
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