In recent years, a community of people living with albinism have forged connections
On platforms like Facebook and WhatsApp, turning a societal stigma into social bonds and offline friendship.
Bernice Agboada, 19, an aspiring model, in Ashaiman, Ghana
When Bernice Agboada was 15 years old, she dropped out of high school because she couldn’t see the blackboard.
The humiliation of walking to the front of the class to see what her teacher was writing was exacerbated by constant ridicule from her classmates. Two years later, she returned to school and began to pay someone to take notes for her.
Now 19, Ms. Agboada has big dreams of going to law school, singing professionally and modeling, but first she needs to complete her final year of high school, which means her day begins and ends on the privately owned minibuses known as tro-tros that she takes to school in Accra, Ghana.
Rejoice Ziwu, a nurse with albinism who is also an albinism advocate
“When he was rushed to the hospital, they didn’t pay attention to him in the hospital and he eventually died,” he said. “We assume he wasn’t cared for because he had albinism because the nurses were afraid to treat him. But we had no evidence and couldn’t prove anything.”
Experiences like Mr. Kabu’s can have lasting effects, including a deep distrust of the medical system. Seeing and meeting other people with albinism on the street and in events hosted by Engage Now Africa, however, helps assuage the pain and ease anxiety.