Seeing the Light

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, Agboada has big dreams of going to law school, singing professionally and modelling, 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.

When she boards the bus, she is met with cold stares from people who sometimes whisper words like obroni or ofri, meaning foreigner or white. “Nobody wants to sit with me, even when the car is full,” she said. a manager of the Engage Now Africa albinism programme.

According to Daklo, the social worker, the government doesn’t see albinism as a disability, and many people who have the condition do not receive the resources they need, including educational support in school, periodic skin screenings and money to buy things like sunscreen.

The fear of kidnapping is a daily concern for Nancy Darkoa, 20, a single mother from a rural village whose daughter Francisca, 4, was born with albinism. Her husband denied paternity of their daughter when he found out that she had albinism, claiming that nobody in his family had the condition.

“Raising my child in the village is more challenging than in the city,” Darkoa said while holding Francisca and carrying her 8-month-old son on her back. “There are more things here that affect my child’s safety, and there are no funds here to provide sunscreen, and apart from that, there is intense name-calling.”

Sampson Amekoe, 39, a plantain farmer from the Koforidua region and the father of three, shared similar experiences: “It doesn’t matter what you do, people will still say something about my skin when I am passing them.”

Access to skin products, sunscreens and having access to dermatologists are some of the largest concerns for people with albinism, who live with the constant risk of sunburn. And economic status often dictates that access.

“People with albinism develop skin cancer at extremely high rates because of the climate here,” said Dr, Jeannette Aryee-Boi, a dermatologist who volunteers with albinism advocacy groups and works at hospitals throughout Accra. “They are often diagnosed at later stages because they