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Waiting to disappear: The danger of being too pale

Ikponwosa Ero went from a child who felt different to the United Nations’ first independent expert on albinism.

Sometimes, as a child, Ikponwosa Ero would scare herself looking in the mirror. “I would forget that I had white skin,” she says. “After playing a while with everyone around me, and then eventually I’d just catch my image in the mirror … ‘Oh my God, yeah, I do have white skin.’ ”

Born in Nigeria to two black parents, Ero’s birth created a visible ripple in her family.

“When my mum had me she was really surprised, and she was hoping I would get darker,” Ero says, her shock of blonde curls casually tied in a pony tail. “Because most children who are born to black parents are born quite fair, and then over time they darken.

“So, [mum] thought, ‘Oh well, she’ll darken just like the rest of the children.’ But I didn’t. And it became very clear that I had albinism.”

Now 36 and a lawyer, Ero is the United Nations’ first independent expert on albinism, having been appointed by the Human Rights Council in 2015 as a way to focus attention on the issue. She has been working tirelessly on promoting and protecting the human rights for people with albinism for over a decade.

On a recent visit to London to launch a report that details horrific attacks and stubborn discrimination against people with albinism in sub-Saharan Africa, she relayed how her childhood prepared her for the role.

Her parents began to quarrel, arguing over whose fault it was that their baby daughter wasn’t black. Only when her mother, a writer, and her father, an academic, realised that albinism stems from both mother and father did they reconcile, Ero relays.

‘A huge stone to carve’

Albinism is a rare genetically inherited condition that occurs worldwide regardless of ethnicity or gender. Both parents must carry the gene for it to be passed on to their children, even if they do not themselves have symptoms of the condition, according to the  National Institutes of Health (NIH), the United States’ medical research agency.

The condition mostly results in the lack of melanin pigment in the hair, skin and eyes. All forms of albinism cause problems with the development and function of the eyes, the NHI explains, as well as sensitivity to sun exposure and increased risk of skin cancer.

At school, Ero couldn’t see the blackboard. As much as she squinted, the letters and numbers were a blurry jumble. To ensure she didn’t fall behind, the young girl struck a deal with a friend.

“She took all my notes from the chalkboard and I did all her essays and all her assignments, and that’s how I went through half of secondary school.”

Despite moving continents, Ero carried on studying. Her family went to Canada when she was a teenager as political turmoil engulfed Nigeria and it was no longer safe for the family to stay.

As the UN’s expert on albinism, she has been gathering information on violation of the rights of those living with the condition and wants to stop the violent attacks in countries such as Tanzania, Malawi and Mozambique.

Sitting on a park bench near Westminster in central London, Ero says she has “a huge, enormous stone to carve”.

Diandra Forrest is living with albinism and part of a growing number of models with the condition alongside South Africa’s Refilwe Modiselle and Sanele Xaba. (Fernanda Calfat, Getty)

There has been progress, she says, and albinism has been getting attention as a social cause.

Supermodels with albinism have, for example, become fashionable: alabaster-skinned South African model and lawyer Thando Hopa is considered “edgy” and will appear alongside Hollywood A-listers in the 2018 Pirelli calender, which is known for sensual images of women. Television presenter Refilwe Modiselle was the first woman with albinism to walk a runway in South Africa and Sanele Xaba is South Africa’s first male model with albinism.

Diandra Forrest, an African American famous for her ethereal beauty, is popular on the catwalks as well as the glossy pages of high-fashion magazines.

But this progress has not only been slow, Ero explains, it has also brought to the fore questions of identity — of belonging in a bewildering world of stereotypes.

“Some people have told me that albinism has done well [in getting attention] because ‘you guys are white’. And so, white people are interested in your issue because they can relate to you … so [people with albinism] are enjoying white privilege.”

She lets out a deep sigh.

“I don’t even know if I can explain it because it’s really complex being white and black at the same ?time. It’s interesting that I’m comfortable in Europe because, to some degree, I don’t stick out like a sore thumb. But it’s a superficial comfort because once people get close they know — and that starts another issue.

“Where everyone is black, then everyone can see you and you feel like you’re naked in a park … While you feel camouflaged among other people who have the same colouring as you, you also feel very black. You can’t relate to European culture at all. Like, you’re completely black. Sometimes you hear drumming … and I just want to gravitate there and [I think] ‘Oh my God, it’s African, it’s drums,’ and I run there … and I’m excited but I don’t have the privilege of making eye contact with the drummer and saying, ‘Yeah, you know, my brother!’ ”

Practical steps to a better world

But class makes a huge difference in how people with albinism are treated, Ero contends. If you come from a more educated family, as she does, you come with the knowledge and resources, for example, to protect your skin from the harsh effects of the sun

If you are poor in sub-Saharan Africa, albinism can still be a death sentence.

“The poor person with albinism has far more damaged skin,” she explains. And although violent attacks have gained publicity, skin cancer poses as big — if not a bigger — threat to people with albinism.

Without melanin, the skin has no protection against the sun. People with albinism in sub-Saharan Africa are at about a thousandfold higher risk of developing skin cancer than the general population, a 2015 study published in the Journal of Skin Cancer found.

“If you went there right now you would see close to 70% [of people with albinism] with some kind of skin damage … from exposure to sunlight, and without sunscreen or knowledge of how to protect themselves”, Ero says.

She has been lobbying for real, practical measures to help people with albinism: the provision of affordable sunscreen as a necessary drug to prevent skin cancer, affordable eye care and vision-enhancing gadgets in the classroom.

And iron bars and proper locks on doors of people with albinism, especially in rural areas, will prevent attacks, she hopes. Families should be given cement to cover the graves of deceased relatives with albinism so that their remains are not stolen.

These and other practical steps to end discrimination and attacks against people with albinism are contained in a regional action plan Ero has drafted. It was recently adopted by the African Commission on Human and People’s Rights.

Students rehearse as part of an albinism awareness campaign. Ero says initiatives like this should become commonplace. (Fredrik Lerneryd, AFP)

Since 2006, and across 28 African countries, there have been more than 600 reported cases of killings or mutilations of people with albinism, according to a report released in June by the International Bar Association’s (IBA) human rights institute.

The most recorded attacks have happened in Malawi, Tanzania and Mozambique. Women and children, in particular, continue to be killed or mutilated, and graves are desecrated to obtain body parts to be used in rituals.

Record-keeping in many countries lacks rigor, and there’s an urgent need for more reliable and timely data.

And, the report finds, governments have failed their legal obligations to protect persons with albinism from human rights violations, attacks and discrimination. Not only do violations go unpunished, but authorities have also failed to meet the needs of people with albinism, including those related to health.

The 91-page IBA report, published in large font so people with albinism can read it more easily, focuses on practical responses.

Ero, who wrote the foreword, says there are “very specific areas that require more detailed law”. For example, legislation “concerning trafficking of body parts doesn’t really exist” in domestic or international law.

“Right now, trafficking laws apply to whole persons,” she says. “But the idea of an arm or a leg being trafficked hasn’t been covered by law.”

The report highlights such legal gaps and offers recommendations to remedy local and international laws.

Although it calls for more specific laws and justice for victims, the report — titled Waiting to Disappear — also addresses the dangerous myths that fuel the abuse.

The IBA’s human rights institute urges governments in Africa to pass legislation that clarifies ambiguities in laws relating to ritual beliefs and traditional health practices.

Ero is clear about why the attacks are happening. She says people with albinism are being mutilated because of a belief that their body parts can generate wealth and good luck when used in magic potions or rituals. Politicians are known to indulge in these dark arts to win elections, she says, or it may be that someone wants a love potion to sway the heart of a desired partner.

“The body parts of people with albinism are in demand, and as a result, there is a black market, allegedly, where the body parts are sold.”

She says “allegedly” because no one has yet been able to “substantively” prove the existence of the black market. But there is evidence that “people have killed and hacked off body parts of people with albinism for money”.

The myths vary depending on which region you’re in. People in some countries believe persons with albinism don’t die, but disappear.

Ero says a lot of people with albinism believe in the myths themselves: some people are genuinely waiting to disappear, not knowing when their day will come.

Tied into this myth that people can disappear is the fallacy that people with albinism are ghosts. Another myth says that having sex with women with albinism will cure a person of HIV.

How to undermine these myths?

“That’s a million-dollar question,” says Ero. “And I think one of the basic ways is just public education and awareness, but [the public campaigns] have to continue for a while. And I recommend they run for a minimum of two years in each location. They should happen so often that people get tired of them.”