For Them, Being Pale Can Bring Scorn, Threats, and Worse

Beneath a white, indifferent sky, a pale boy in a blue-and-red uniform shyly bows his head as tears begin to slip down his cheeks. He is retelling his terrible story. His father, visiting for the first time in two years, pulls out a white handkerchief. In the shade of a lone tree in the center of a Tanzanian schoolyard, the man reaches over to cradle his son’s head and dab his eyes because the boy can no longer dry his own tears.

Emmanuel Festo, who is 15 years old, has spent much of his life learning to live with what he lost one night when he was six. Four men with machetes hacked off most of his left arm, most of the fingers on his right hand, part of his jaw, and four front teeth, intending to sell them. Emma, as he’s known, is now a top student at a private boarding school. Although he stutters, he’s healthy and strong, and he has friends. He’s also an artist, drawing soccer players and Spider-Man and, for me, a detailed map of his country, by heart, using his cheek, chin, and shoulder to steer his markers.

Emma was born with albinism, a recessive trait he inherited from his dark-skinned parents. His own skin is ivory white, his close-shaven hair pale orange, his eyesight weak. People like him have long been feared and scorned in sub-Saharan Africa, even by their families. Now they’re being attacked. Some witch doctors claim their body parts, made into potions, powders, or charms, can bring wealth and success.

Detailed, gruesome records are kept by Under the Same Sun, a nonprofit organization working to end discrimination against those with albinism. Since the 1990s, in 27 African countries, at least 190 people have been killed and 300 attacked, most since 2008. The epicenter of this crime wave, which includes the robbing of graves, is Tanzania.

Almost a decade ago, when these attacks first drew widespread attention, Tanzanian officials rounded up many kids with albinism and, for their safety, sent them to rudimentary schools intended for blind and other disabled children. Many remain, living in squalid conditions. Until 2012 Emma shared a bunk bed with three boys at one of these government centers.

Emma tells me he loves his new school near Mwanza, where he has a bunk to himself. When I ask him about today’s challenges, he says the kids mock his broken teeth. Then he makes a simple, heartbreaking confession: “Going to the toilet. My friend helps, but sometimes he doesn’t give me toilet tissue, or just a small piece, and it’s not enough for me.”

Five hundred miles away in Dar es Salaam, Tanzania’s biggest city, Mariamu Staford understands what Emma faces. She lost both arms at 25 but at 33 runs a small shop selling water and soft drinks. Her smile fills her round face, her toenails are painted red and blue, and she glows in a shiny green dress. Its sleeves hang limp at her sides.

Two of her attackers were released, and one died before trial. When I ask about the fourth—a neighbor—she closes her eyes and squinches her face as if she’s about to let loose with a terrific punch line. “They set him free!” she shouts. “He’s back in the village.” Because of her weak eyesight, she adds, “the judge said I couldn’t identify him. But we had lived near that guy for more than 10 years. I could identify him easily.”

She is dependent on a young helper who makes change for customers, and a full-time caregiver who cooks and feeds her, dresses and undresses her, and washes her in a manner most people never want to need. Yet in other ways, she’s independent, reading her Bible by using her tongue and chin to turn the pages. And she brags to me that she can text on her cell. I watch in amazement as she nudges the phone into place on a small table and then leans forward as if to kiss it. Instead she’s typing with her teeth, which sounds like a hen pecking at the ground. “Bwana Yesu asifiwe,” she has written in Swahili. “Lord Jesus be praised.”

Emma and Staford, like others with albinism, have little or no melanin, or pigment, in their skin, hair, and eyes. They are vulnerable to sun damage that can cause cancer. Emma’s vision is so poor he must lower his nose an inch from my phone to see a photo of himself. Their challenges are similar to those of people born with albinism across the world—the sting of ridicule, poor vision, and sun sensitivity—but they also live in a region where a belief in spirits and spells is common, education is spotty, poverty is endemic, and albinism has been widely misunderstood. Men accuse their wives of sex with white men; parents believe their newborns are ghosts; nurses, as recently as a generation ago, told new mothers that venereal diseases must have bleached their children in the womb. In the past those with albinism were often killed at birth, or buried alive in tribal rituals.

Although the world’s largest reported family of people with albinism lives in India—three generations, no exceptions—albinism is more widespread in Tanzania than in any other country. About one in 1,400 people there is born pale, and about one in 17 carries the recessive gene. Its occurrence varies greatly throughout the world. In Europe and North America the rate is only one in 20,000. On the San Blas Archipelago off the Caribbean coast of Panama, the rate among the Guna people is a staggering one in 70. There, locals say, dark and fair Panamanians live together without incident, the way tall and short people coexist.

Emma’s secure schooling and Staford’s caregiver are paid for by Under the Same Sun, founded by wealthy Canadian businessman Peter Ash. From his commercial real estate business based in Vancouver, he and his wife contribute about a million dollars each year to the nonprofit’s $1.5 million budget. Ash is almost certainly the foremost advocate for people with albinism. He persuaded the United Nations to name June 13 as International Albinism Awareness Day and to appoint a UN expert, who traveled to Malawi and Mozambique last year as attacks there soared.

Almost all the nonprofit’s money is spent from a fenced and guarded compound in Dar es Salaam. Under the Same Sun is paying to educate about 320 children to become professionals, seeking to change the stereotypes about—and the future for—people with albinism in sub-Saharan Africa, where for centuries they’ve been seen as curses and burdens: too poor-sighted to educate, too prone to sunburn while farming or fishing, and too strange to embrace.

As we’re bumping over a road after meeting Emma, Ash tells me, “I view these kids as missiles, launched into society to blow up discrimination.” Later he settles on the ground in the shade at another school, with 40 albino students from toddlers to teenagers. Big, beefy, and self-assured, he cheers as they shout out their career dreams—“Lawyer!” “Nurse!” “President!”—then pronounces them “ambassadors for change.” Afterward, they swarm him. He lifts the chins of the bashful ones and says, “You must look at me. If you don’t believe in yourself, the world will not believe in you.”

Under the Same Sun’s staff of 26 Tanzanians, more than half with albinism, leads seminars on understanding albinism, usually in villages where people have been killed, attacked, or even kidnapped, never to be found. In those remote places, a variety of advisers, witch doctors, sorcerers, or diviners, called waganga in Swahili, are consulted for problems ranging from illness to a dry cow to an aloof wife. Prescriptions might include pulverized roots, herbal potions, or the blood of animals.

People desperate for success—in work or politics—sometimes seek more potent solutions. Some waganga insist that the magic they need thrives in their chalk-skinned neighbors. Albino hair and bones, genitals and thumbs, are said to possess distinct powers. Dried, ground, and put into a package or scattered on the sea, bits of people born white on a dark-skinned continent are alleged to make a fishing net bulge, or reveal gold in a bed of rock, or help politicians win votes.

On the stony southern shore of Lake Victoria in Mwanza, men and boys loiter in shorts, T-shirts, and flip-flops around their 40-foot, rough-hewn wooden sailboats. “What do you do to improve your luck?” I ask, and one fisherman explains in Swahili: “We can’t just go into the lake without some kind of guidance or protection. Some of us believe in God, but the ones who believe in witch doctors get more than those who believe in God!” Everybody laughs and nods heartily. He continues, “We get from witch doctors something wrapped in cloth or paper.” One man shows me with his fingers that it’s shaped like a cigar. It can cost as much as 100,000 Tanzanian shillings—about $45—and is embedded in the boat. I ask what’s in the packet. A tall, older man says simply, “We dare not look.” I say, “I have heard that sometimes body parts of albino people are used for these charms,” and before my translator finishes, all of them are frowning. One says, “Here nobody does that. They do it in the mines.”

It’s unclear exactly how such body parts earned their mystique, but academics trace their use as commodities to the turn of this century, when subsistence farmers saw more opportunity but also more risk in fishing or mining for gold. Simeon Mesaki, a retired sociology professor from Dar es Salaam who studied witchcraft for decades, tells me that in Tanzania many go to church, but many more seek local wisdom. “God is far away, but the diviner is close by,” he explains.

Most of the time a family member is implicated in the attacks. “Walking money” is a taunt thrown at people with albinism. The mother of a four-year-old boy who’s in a safe school after men on motorbikes tried to snatch him from his front yard tells me, “I can’t even trust my relatives, because if they want money, they’ll do anything.”

Ash offers me an analogy: “It’s as if you had a dog in the backyard who was diseased, and your neighbor says, ‘I’ll give you one million dollars to bump off that dog.’ That’s how some parents view these children. A whole arm could fetch $5,000 at a witch doctor’s, and let’s say the father gets $500 or $1,000. It’s a lot of money.” In Tanzania the average annual income is about $3,000.

Since 2007 only 21 people have been convicted for murdering people with albinism in just six cases, according to Tanzanian prosecutor Beatrice Mpembo, who blames the low number on lack of cooperation from relatives. Ash says only about 5 percent of those arrested are convicted. No one has ever named any of the primary instigators of this violence—the affluent clients of the waganga.

Ash’s boyhood fantasies never involved Africa. All he wanted to do was rocket into space. “You’ll never be an astronaut,” his mother told him, “but there are thousands of other jobs you can do.” He served as a minister, then joined his older brother, who also has albinism, in business. Because he is legally blind, like most people with albinism, Ash employs a full-time driver, who chauffeurs him in a late-model, black BMW. His $900 glasses are tinted against the sun, and the left side, for what he calls his “seeing eye,” is fitted with a lens that magnifies six times.

By 2008, when he was 43, he had accumulated so much money that he was feeling ready to do something with the excess. A late night spent Googling “albinos Africa” left him horrified and sleepless. In those wee hours he read recent reports by Vicky Ntetema, a Tanzanian who was the BBC’s bureau chief there.

Tipped off to attacks, including a teacher’s murder of his 18-month-old son, Ntetema posed as a businesswoman to visit two traditional healers and 10 witch doctors, whose round thatched huts, topped with “antennae” made from sticks and cowrie shells, dot the rural landscape. “Two made it very clear, ‘We kill,’ and promised after I sent them a down payment they would give me body parts,” she recalls. Each part, even hair, would cost her $2,000.

Her reports, to her surprise, angered Tanzanians. Witch doctors texted death threats to her. Countrymen questioned her patriotism. Government officials suggested this happened in other places, so why focus on Tanzania? For her safety, the BBC sent her into hiding outside Tanzania. Ash found her and, by phone, listened for hours.

He could not locate Tanzania on a map. He had never traveled farther than Europe. He had never carried his albinism as a purpose. But, he says, “I had an answer to the question of what would be next in my life.” The next morning he checked flights to Africa.

Ntetema now leads Under the Same Sun’s Tanzanian staff. She knows almost all of the sponsored children by name and can tell their stories.

Among the newest and sweetest is Baraka Cosmas, a tiny boy of six. His earnest face belies a tender spirit, even though his right hand was sliced off a year before. “I saw the blood flying all over the place,” he told Ntetema after his attack, “and I called for my father, but he didn’t come.” When Ntetema told her team about his March 2015 attack, she ended her email: “God, this is too painful! When will it end?”

We first met in 2015, when Global Medical Relief Fund, a small nonprofit based on New York City’s Staten Island, arranged for Baraka, Emma, and three other maimed Tanzanian children with albinism to be outfitted with free prosthetics by the Shriners Hospital in Philadelphia.

Now in the lobby of a Dar es Salaam hotel, Baraka draws pictures in my notebook, holding a teddy bear I brought for him under his stub arm. Like Emma, Baraka has outgrown his prosthetic. He and one sister with albinism are going to school on Under the Same Sun’s account. He and I resume our game of touching each other’s face, saying, nose, pua; eye, jicho; cheek, shavu. He remembers how to count to 10 in English, using the fingers on his only hand twice.

He’s seen his mother a few times, but frowning, he says, “My father is in jail.” I don’t ask why because I know: His father and a witch doctor are charged with assaulting him. Meanwhile he is happy, getting more hugs and kisses at his school, he says, than he ever did in his village.

You May Also Like

SCIENCE

Melanoma is overdiagnosed at ‘alarming’ rates. Here’s what to know.

SCIENCE

How we should really be using castor oil

HISTORY MAGAZINE

They robbed graves and got away with it—until some turned to murder

That evening Ash hosts a banquet for a dozen of the some 40 sponsored students who have graduated from college and found jobs with help from the organization’s Godliver Gordian. She’s a sparky young woman who cajoled employers, making the case for the students despite the fears she heard: “They’re ghosts, white dogs, white monkeys. They’re cursed. If you put them in your business, it could get cursed as well.”

I meet a bank teller, a journalist, a lab tech, and a 23-year-old actor who starred in the 2013 indie film White Shadow, about a boy being hunted for his body parts. Hamisi Bazili told me his mother, who also had albinism, died of skin cancer after the film came out. She was 44.

For those with albinism in Africa, this is an all too common fate. Only recently have nonprofits begun to aggressively preach sun protection, distributing free sunscreen—which is otherwise rare and expensive, about $25 a tube—and wide-brimmed hats with flaps in back to cover the neck.

In Dar es Salaam I visit the Ocean Road Cancer Institute to meet Jeff Luande, considered the nation’s expert on skin cancers that afflict people with albinism. As recently as 1990, he found that only 12 percent of people with albinism in the metro area lived to 40. The biggest killer: squamous cell carcinoma, easily treated if caught early.

He leads me to a ward where six men, two with albinism, lounge on their beds in street clothes. Saidi Iddi Magera gingerly unwraps the gauze around his head, revealing a raw, rough hole in his neck, below his left ear, big enough for a child’s fist. Blood drips from it onto his crisp khaki pants. It’s very advanced, Luande confides to me. Magera has languished in the bed for nine weeks, awaiting radiation from overbooked equipment.

Across the ward Msuya Musa lies hoping for a benefactor; he needs about $20 to get home, after yet another treatment. His cancer, three years old, consumed part of his left ear and turned the base of his neck a mottled red. “Now,” he says, “I am trying to do fishing at night.”

Neither man, each in his mid-40s, is likely to survive long, Luande says. They probably sought spurious help from waganga first, and medical help too late.

The children sponsored by Under the Same Sun know and demonstrate the sunscreen drill, smoothing it on the backs of their ears and in between their fingers. But the sun remains their daily curse. Without sunglasses, bright light stings their eyes, so they must close them for relief. Ash’s group hands out sunglasses at every stop, and other groups test eyesight and distribute free spectacles, as they’re called here, to help schoolchildren read blackboards.

In most of the world, people with albinism face childhood taunts and schoolroom frustrations, but they regularly find work and love and raise a family. Recently, in some careers, white skin and hair have even become an unexpected asset.

Consider musician Aaron Nordstrom, 35, vocalist for the alternative metal band Gemini Syndrome in Los Angeles.

“When I was in eighth grade, when I used to dye my hair strawberry blond, I looked like a pale Irish person. I even painted my eyebrows with a pencil,” Nordstrom tells me, chuckling, but wiping away tears. “I spent most of my life trying to blend in. I was angry and depressed, on medications from the time I was 12 or 13.” Eight weeks into high school, he tried to kill himself.

Playing piano and guitar with rock bands that were “angry without apology” gave him an outlet. He began to write his own music, including a song called “Basement” with the opening words: “Color-coded blasphemy, this really strange anatomy—is this really my life?”

Applause gave him confidence. Now his hair is in dreadlocks and his beard is hefty. “When we play on stage, everybody wears black except me. I wear white.” He needs no makeup to distinguish himself: “It’s God-given.”

Kenya hosted the world’s first beauty pageant for people with albinism just last year, to help lift the stigma, while models with albinism are making a name for themselves on fashion runways around the world. Diandra Forrest, an African American from the Bronx, New York, was the first to be signed to a major agency. Confidence, she says, “was a work in progress, after so many years of being teased and misunderstood.” At 28, she says she wouldn’t trade her ethereal beauty: “I don’t mind anymore being the albino model, because at least now people know what albinism is.”

A few people with albinism also are making it to the top in Tanzania, including a couple of members of parliament and Abdallah Possi, who, in 2015, at age 36, was named a deputy minister—the first with albinism. Now an ambassador, he was also the country’s first lawyer with albinism.

I meet the future of albinism in Tanzania when Acquilina Sami, 28, welcomes me to her apartment just outside Dar es Salaam, two cinder block rooms with bars on the windows, a lace curtain over the door, and a crucifix on the wall. Tall and achingly lean, with wide hazel eyes and a high forehead, she begins her story: “My father left when I was one week old.” He blamed her mother for her skin and her older brother’s. “He didn’t want to see us. He said, ‘They are not human beings.’ ”

She feels lucky he didn’t do worse. “In our culture, when a child is born with this, very soon they are thrown into the lake so they would not be seen. Yes,” she nods. “It’s known.”

A Dutch woman who employed her mother paid for Sami’s private schooling. She aimed to be an engineer until she realized that meant dealing with tiny numbers and symbols. Instead, with help from Under the Same Sun, she earned a degree in business administration. She now teaches at the Institute of Social Work, where she roams the classroom, engaging her students, lecturing without notes, rarely using the blackboard.

“Most come in wondering,” she says. “I tell them a little bit about me; they get the ABC’s of albinism.” They grow to like her, she says. “Teaching is my dream job, my happiness: moving a person from one stage to another.”

She believes the stigma against people like her is fading, although she interacts daily with strangers who stare at her, thinking thoughts she cannot read. Her life’s challenge, she says, remains a simple but, in Tanzania, still a difficult one: “Peace of mind.”