Twenty-nine-year-old Cameroonian Nicole Whitney Ebenye never met her father. He abandoned her and her mother when she was two months old because she had the rare genetic condition albinism, which gave her light-coloured eyes and fair skin.
Like Nicole, thousands of other Cameroonians have had to grapple with the stigma associated with albinism, which causes the absence or lower than normal levels of the pigment melanin in the skin, hair and eyes.
“It is painful to grow up as a child knowing you were rejected over some phenomenon you had no control over,” says Ms Ebenye, who lives in the coastal city of Limbe.
In Cameroon and other West African countries, people with albinism can face discrimination rooted in superstition and lack of awareness about the condition.
According to a 2019 UN report, newborns with albinism are often killed immediately after delivery, but falsely reported as stillborn.
Like many of Cameroon’s estimated 2,200 people with albinism, Ms Ebenye has found life difficult in a hostile society.
“I had to learn self-confidence and be resilient from a very young age,” she said.
Ms Ebenye told The National she had faced critical comments about her skin and felt people looked down on her because of her condition.
Seeking support wherever she could, it was Facebook that transformed her life, she says.
In 2017, curious to know if others shared her experience, Ms Ebenye used social media for the first time to explore the issue.
“I saw people with albinism from Cameroon, Nigeria and other countries post pictures of themselves on Facebook. They were vocal and confident, which changed my perspective,” she said.
In 2018, Ms Ebenye came across the Facebook page of Association des Femmes Albinos du Cameroun – the Cameroon Association of Albino Women – founded in 2010 by Marie Madeleine Wafo.
The group aims to establish statistics on albinism in the absence of government data and work with people with the condition to improve their lives.
“I use personal and very limited resources to travel in Cameroon to meet and work with persons with albinism and to try to have some statistics that are not available at the level of the government,” said Ms Wafo.
“Some parents still maltreat their albino children, while many have learnt to accept and treat them well,” she said.
Miss Albino Cameroon
The group offers a rare space where people with albinism can freely challenge stereotypes associated with their condition.
The organisation has been running the Miss Albino Cameroon beauty pageant since 2016 to challenge mainstream beauty standards, and to encourage albinos to appreciate their appearance.
“I reached out to them and participated in their beauty pageant on the day of the final in 2018 … the confidence of the beautiful boys and girls on the runway truly inspired me,” Ms Ebenye recalled.
The number of participants in the pageant has almost tripled over the past seven years, indicating an increase in self-confidence among albinos. The pageants are also attended by non-albinos, suggesting a positive change in attitude among wider society.
Ndong Sandrah Chiembzi, winner of the 2023 competition, said she always dreamt of living free of prejudice.
The 20-year-old, whose five brothers do not have albinism, says her family encouraged her to enter the contest.
She says her mother and younger brother had been highly supportive.
“My younger brother has assumed the position of my manager and goes to all events where I have to speak with me. He is a wonderful source of support,” Ms Chiembzi told The National.
“Now parents reach out to me quite often to ask how they can help their children with albinism,” she says.
Raising awareness
Even though the government in Cameroon recognises the country’s people with albinism as a marginalised group – ensuring admission to public institutions and waiving school fees – they still face exclusion.
According to the UN report, children with albinism in Cameroon are often denied access to education for health reasons, particularly eye problems.
People with albinism’s low level or absence of melanin can cause poor eyesight, astigmatism, and photophobia among other issues, according to the UK’s National Health Service.
As adults, they continue to face discrimination and often cannot get jobs, driving many to stop interacting socially, further limiting their opportunities.
Despite these challenges, many people with albinism in Cameroon have carved out successful livelihoods.
Ms Ebenye, for example, works in the stores accounting department at the Douala General Hospital by day.
But on top of her day job, she runs the Born to Dazzle Foundation, a non-profit organisation she founded in 2020 that adopts a culture-focused approach to raise awareness about albinism and to correct false beliefs.
With the help of Cameroonian celebrities like comedian Kwoh Elonge and hip-hop artist Boy Tag – who himself has albinism – Ms Ebenye’s foundation strives to erase the social stigma through drama skits and songs on social media.
Elonge is a researcher, writer, journalist and comedian, and the man behind the popular comic character Auntie Felicia, who he plays in live stand-up comedy shows and online comedy skits.
The character is an influential woman who stands for what is right, despite her boastful and argumentative nature.
Elonge said that as someone committed to changing behaviour through communication, he wanted to take part in a comedy skit with the Born to Dazzle Foundation.
In the skit, Auntie Felicia’s initial hostility to her son proposing to a woman with albinism is overcome as her future daughter-in-law takes the time to deconstruct various myths about the condition.
The skit is especially notable because it ends with Auntie Felicia yielding to another person’s opinion in an argument – which is out of character for her – and embracing her albino daughter-in-law.
“I am aware of the dangers of one-sided communication, so I wanted to add my voice … to contribute to the unlearning of the misconceptions around people with albinism. Comedy makes the communication light-hearted and people learn so much while laughing,” said Elonge.
The skit on albinism was viewed by more than 300,000 people on Facebook alone, he said.
However, some experts are unhappy with how, in general, people with albinism are portrayed on social media.
Nfor George Kisob, a social worker and human rights advocate with the National Human Rights Commission in Cameroon, who has worked closely with the albino community, is among those who are critical.
“Social media skit makers use albinos to joke about their vision problem, which is the common form of disability, in addition to their skin problem, instead of giving them roles that build confidence,” said Mr Kisob.
This story has been published in collaboration with Egab
