Africans With Albinism Step Out of the Shadows
WHY YOU SHOULD CARE
The color of our skin does not define our essence.
Thando Hopa has a gentle fierceness about her. She is wearing an off-the-shoulder navy blouse, tiny discs in her ears and almost no makeup. The absence of melanin in her hair, eyebrows and eyelashes gives her hazel eyes an unwavering intensity. “Here is a force to be reckoned with,” I think. The 28-year-old is “untaggable,” according to a 2017 Audi advertisement in which she starred. Until 2016, Hopa was a lawyer prosecuting sex crimes.
She is also the first Black South African to appear in the famous Pirelli calendar, posing for the 2018 edition alongside celebrities like Whoopi Goldberg, RuPaul and Lupita Nyong’o. And although Hopa does have the genetic disorder, she is decidedly not a spokesperson for people with albinism (PWA) — just an unintentional role model, who, along with other PWA across Africa, is stepping out of a long shadow cast by ignorance and superstition to reclaim what she calls “human agency.”
From Mali to Malawi, simply having albinism can be fatal. According to a report prepared by Ikponwosa Ero, the United Nations’ independent expert on the rights of people with albinism, more than 600 attacks and other human rights violations have been reported in 28 countries across sub-Saharan Africa since 2006. One corpse, for use in witchcraft rituals, can fetch up to $75,000, according to the Office of the U.N. High Commissioner for Human Rights. Families, Ero somberly notes, are often complicit in the violations.
We think it’s very important for people with albinism to have role models in all professions.
Salif Keita, singer-songwriter with albinism
The signs of resistance are growing stronger, though. In Malawi, the Association of Persons with Albinism in Malawi, organized in 1996 by a few families for community outreach, was mostly dormant until 2013. Today, the movement has gathered pace, says Boniface Massah, APAM’s national coordinator, with more young people demanding their rights. Across many African nations, it is now possible to read about or talk to PWA who are living loud and proud, an improvement Ero attributes to increased activism.
The fashion industry is doing its bit in South Africa, Tanzania, the Democratic Republic of Congo and Kenya, holding fashion shows and beauty pageants for PWA. In Mali, Afropop singer and songwriter Salif Keita and his wife, Coumba Makalou, are helping PWA access education and health care through their nonprofit, the Salif Keita Global Foundation. Now, says Hopa, other segments of society need to join the battle against discrimination.
“You can’t have one pillar working on its own,” she says, adding that if civil society and a handful of other sectors like the fashion industry are left to challenge stereotypes, “then you are overburdening that pillar.” Stereotypes were a part of Hopa’s childhood. She recalls being treated “quite differently” at school. “They did the usual name-calling the way kids would because they just didn’t understand somebody who looked fundamentally different from the way they looked,” she says. But at home in Lenasia South, her family made her feel whole. Then, in September 2012, fashion designer Gert-Johan Coetzee approached Hopa in a mall. She had never thought about modeling, but realized she could use the platform to tell less unidimensional stories, and more positive ones, about albinism. The pair have collaborated since.
Indeed, the fashion industry has been at the forefront of the battle against stereotypes about albinism. After winning the Miss Tanzania title in 2012, Brigitte Alfred Lyimo became an advocate for PWA. This past Jan. 26 she staged a fashion show called “My Skin My Pride” at the Turkish ambassador’s home in Dar es Salaam. “Part of the solution is to show that a person with albinism is just like me and you — that’s part of the advocacy,” the 23-year-old says, fanning her face on a warm day. “There are these beautiful girls on the runway, they are so confident in their skin.… I wanted to inspire not only the public but also others with albinism who are not confident in themselves.” That event followed “Proudly Albino,” a 2015 fashion show in Kinshasa, D.R.C., and Beauty Beyond Skin, the world’s first beauty pageant for PWA, held in Kenya in 2016.
In Mali, Keita uses his status as one of the continent’s best-known musicians — he’s called “the Golden Voice of Africa” — to uplift others with the hereditary genetic condition. “We think it’s very important for people with albinism to have role models in all professions,” says Keita via email. His foundation is often asked to help recruit for commercials and films. But when a TV series recently asked for help casting an albino villain, Keita and Makalou declined, with Makalou pointing out to the producers the stigma PWA already have to endure. Later, Keita says, the producers appeared to have altered the role.
Despite these gains, Ero warns that people living with albinism remain at risk — particularly those in rural areas. To speed up progress, she helped draft a five-year Regional Action Plan on Albinism in Africa. In May 2017, the African Commission on Human and Peoples’ Rights endorsed the plan, which “lays out specific measures for addressing attacks and discrimination against persons with albinism through prevention, protection, accountability as well as equality and nondiscrimination measures.”
But it’s also important, Hopa notes, for PWA to seek a sense of “enoughness” without constantly second-guessing themselves because of their skin tone. She wasn’t given a spot in the 2018 Pirelli calendar because she has albinism, she says. “I was just a different facet of Black.”