Emily Urquhart on International Albinism Awareness Day

13th June 2016 is International Albinism Awareness Day, dedicated to raising awareness about albinism across the world. Read this beautiful piece by folklorist Emily Urquhart, author of eye-opening, heartfelt memoir Beyond the Pale, on albinism in Tanzania, advocacy group Under the Same Sun, and the importance of International Albinism Awareness Day:


The saddest person I’ve ever met was named Mwigulu Matanange. He was 10 years old. I first saw him when my husband and I were visiting several children with albinism at a school outside of Dar es Salaam in 2013. Our daughter, who was then two, also has albinism, which is a lack of pigment in the hair, skin and eyes and is accompanied by a visual acuity of near legal-blindness. She was diagnosed when she was three months old.

In the beginning, I knew nothing about this recessive genetic condition. When I typed albinism into an internet search engine I was shocked by the resulting news hits from East Africa. People with albinism — often children, even babies — were being murdered by poachers and their body parts sold in a gruesome black market fuelled by witch doctors who used their remains in potions purported to bring luck in life, love and business. These grisly entrepreneurs were taking advantage of beliefs, held by some in Tanzania, that people with albinism are not human.

Over the past 15 years 75 people with albinism have been killed and another 63 have survived attacks by poachers in Tanzania. The total increases dramatically when including incidents in nearby countries, often a result of cross-border trade.

I had to find out more, and what I could do to help. Two years after I first learned of these crimes I was on a plane to Tanzania. By then I’d read extensively about the murders and mutilations of people with albinism, and I’d met with a child who’d survived a machete attack (he was in Canada having reconstructive surgery). I should have been prepared when I met Mwigulu, but I wasn’t.

He was sandwiched between three other boys who, like him, had albinism. His peers chatted shyly with me and my husband in a mix of Swahili and English. But Mwigulu stayed silent, his eyes downcast.

“He hasn’t spoken since his attack,” explained Omary Mfaume, the education liaison for the albinism advocacy group, Under the Same Sun (UTSS). This is when I noticed that Mwigulu’s T-shirt gaped open where his arm should have been. Just 12 weeks before, he’d survived a machete assault by a poacher and lost his arm in the struggle. The trauma was apparent and not just because of his injury. His body seemed weighted with sadness and fear.

The people who can afford the witchdoctor’s potions are powerful and wealthy. In other words, they are the people who run the country. Only a handful of charges have been laid despite more than 100 incidents. Earlier this year 225 witch doctors were arrested in relation to the crimes against people with albinism but they were released days later.

Last year, three children under six were kidnapped. One child survived but lost his hand while a second remains missing. The third, one-year-old Yohana Bahati, was dismembered and killed. As a parent of a child who shares this genetic condition, and as a human being, I feel these losses deeply. I am not alone.

United Nations High Commissioner for Human Rights, Zeid Ra’ad Al Hussein, has called the attacks “stunningly vicious” and urged the Tanzanian government as well as officials in other African countries to condemn the perpetrators of this violence.

Last year, in an effort to raise awareness of the indignities and the violence faced by people with albinism worldwide The United Nations Human Rights Council adopted a resolution naming June 13, 2015 the inaugural International Albinism Awareness Day.

What you can do to help is write to the Ministry of Foreign Affairs to ask that they support the current initiatives at the United Nations Human Rights Council aimed at ending this atrocity and show your support for the second International Albinism Awareness Day on social media.

I haven’t seen Mwigulu since the day we met, but I learned that in the following months he’d made some tentative steps toward healing — both physically and mentally. During a special summer camp designed by UTSS to boost the confidence of children with albinism he’d started speaking again. In a photograph from that event the stump of his arm is visible with the scars that snake around its base, but the wound has healed. He’s looking into the camera and the corners of his mouth are ever so slightly curved upwards into the hint of a smile.

Continued pressure from international governments, buoyed by International Albinism Awareness Day, could work toward ending these crimes. And if the saddest boy in the world can smile again, I think anything is possible.


Emily Urquhart is the author of Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes. To read about Emily’s journey you can download the ebook for just £1.99 over on Amazon UK for a limited time only.

A version of this editorial was first published in the Toronto Star

TAGS: , , , , , , , ,