Albinism: Caught Between Dark and Light

Stares, taunts fill life of black twin, 10, with albinism; brother unaffected.

Aug. 25, 2010 — -- Kenyen and Khari Flowers are 10-year-old, African-American twin brothers. Born 25 minutes apart, they're so close that Khari says he considers Kenyen "the second part of my heart."

As twins, they share almost everything: riding bikes through their suburban Chicago neighborhood, battling it out with video games in the living room; everything, that is, except their skin color.

Kenyen has albinism, a hereditary condition in which the skin, hair and eyes produce little or no melanin, resulting in a lack of pigmentation. While Khari and the rest of the Flowers family have what Kenyen calls "chocolate" skin, he says his skin tone is "banana mixed with vanilla -- bavilla."

Kenyen's appearance generates stares and whispers, and, at school, teasing surrounds him. Strangers often assume he's not part of his own family.

"When people ask questions like, 'Are you really his brother?' It makes me feel, like, nauseous," Kenyen said. "... It's just that I'm lighter, and then they don't understand it."

In addition to a distinct color difference, people with albinism also suffer from low vision and nystagmus, a condition marked by involuntary eye movement. Some people with albinism, traditionally referred to as albinos, are even legally blind.

As a result of albinism, Kenyen requires a special teaching aide and equipment at school to help him with his limited vision.

The condition, which affects one out of every 20,000 people worldwide and cuts across all ethnicities and even the animal kingdom, is the result of a recessive gene both parents must have.

Khari, the more athletic of the two, and ever the protector, often believes he has to defend his brother.

"I heard people call him albino, freak, idiot, retard, all kinds of names," he said. "When I hear those, I just fight back, and say, 'What happens if you're him?'"Finding acceptance with friends is difficult. But, according to Kenyen, the social stigma of albinism, make trying to have a love-life nearly impossible. "The girls they all say we're [not attracted] to you," said Kenyen. "They'd rather have a big guy that plays football instead of a kid with albinism. It's heartbreaking."

Teasing: 'My Daughter Doesn't Have a Friend'

For most children with albinism, teasing is common. Fifteen-year-old Angel Stillman of central Pennsylvania has had to transfer in and out of eight different schools since pre-school because of relentless taunting.

"After a while, it just got to a point where it was really bad," Angel said. "It happened almost every single day when I got into middle school. Having people pick on you that severely, like try to trip you and make fun of you so that you don't really fit in anywhere, it kind of makes you feel like, 'Why do I even come to school?'"

Angel's mother, Paula Stillman, agreed that classmates couldn't look beyond the skin tone.

"People can't see who she is," Stillman said. "They just automatically look at her and put her in a cubby hole. And just seeing her wanting to fit in, wanting to have one friend ... that's sad. My daughter doesn't have a friend. ... People don't give her a chance."

Click here to see photos of people with albinism

To try to remove herself from public scrutiny, Angel began taking classes online, communicating with her teacher and classmates via computer speakers. But for the naturally outgoing and gregarious teenager, it wasn't a good fit.

"I probably spend, out of 24 hours, probably 20 hours alone," she said. "If [I could] have one wish, I would say, I'd never be alone."

Along with her social life, Angel's grades were also suffering. The former A student was getting Ds.

Wanting to give public school another shot, Stillman decided on the most extreme kind of makeover -- dyeing her white hair, eyelids and eyebrows a darker color -- a somewhat controversial move in the albinism community, known as "passing," where those with albinism try to conceal their natural features.

By "passing," however, Stillman has finally made the friendships she has always dreamed about.

"They get a look on the outside and then they want to talk to me and then want to see what's on the inside and then they want to be closer friends," she said.

African-American Albino Model Takes Industry by Storm

Tall and blonde with high cheekbones, hazel eyes and full lips, Diandra Forrest, 19, would be anyone's dream girl. When she walked through the doors of the well-known modeling agency, Elite, her former agent Calvin Wilson said he couldn't take his eyes off her pictures.

"She's just very striking," Wilson said. "I remember when I first got them, I was like, 'Wow, she's just incredible.'"

But, along with all the agents' enthusiasm for Forrest's striking beauty, there was concern about her being an African-American with albinism. In an industry where everyone's looking for the next big thing, Forrest insists she's not a gimmick.

"I'm a model, but I'm not a model just because I'm albino," she said. "I have the look, the body and it's just something that I've strived for, that I've always wanted to do."

As one of four children in a close-knit, cash-strapped family in the Bronx, N.Y., many people taunted her and attacked her ethnic heritage.

"People called me 'Powder,' 'White Girl', things like that," she said. "To me, it was offensive because I'm African-American and I didn't want to be called [names] like 'Snow White' or 'White Girl' or anything because, yes, my skin is lighter, but that's not who I am."

Much like Angel, Forrest changed schools numerous times before enrolling at the private New York Institute for Special Education, a school for visually impaired children. There she met her sixth-grade teacher, Melissa Reed -- also an African-American with albinism -- who says the future model was a shy, quiet child -- too afraid to speak up.

"I said to Diandra, 'In my class you don't have to whisper. Don't worry. I won't bite.' And I was determined to make school a place where learning is fun," Reed said.

It was the start of Forrest's metamorphosis, in which her inner beauty came to match her outer beauty and she transformed from a shy girl into an outgoing and sometimes outspoken woman.

Forrest is a symbol of hope wrapped up in a beautiful package because she is living a model's fantasy. She is seeing her career on an upswing, appearing recently in Glamour magazine and walking the runways of Paris, London and New York during Fashion Week. Not only has she fulfilled her dream, she's inspiring many girls to hold on to theirs.

Victor Varnado often begins his stand-up comedy routine by announcing that, yes, he is a "black albino." He is also one of the most successful entertainers with albinism in the country, appearing alongside Eddie Murphy in "Pluto Nash," Arnold Schwarzenegger in "End of Days" and on the sitcom "My Name is Earl." But it hasn't been easy.

"I was doing this show where I didn't mention that I was an albino," Varnado said. "And someone in the audience raised their hand and they were like, 'Are you an albino?' That was a question. And I was like, 'Oh, yes, yes I am.'"

But being the "black albino comic" has sometimes made getting gigs a struggle.

"I was auditioning for yet another sketch show and I got to the final, final casting call and the casting director sat me down," Varnado, 40, said. 'Victor, you're always very funny, but the thing is ... you don't fit into our mold.' I know what the mold is. It's like funny white guy, funny fat white guy, black guy, maybe an Asian girl. There's never a 'black albino guy' rounding out the cast."

Now, Varnado's working on his own labor of love -- the "Awkward Kings of Comedy," a showcase for black comedians who fall outside of the mainstream.

"If you were to ask the 17-year-old me, if I had a choice of not being an albino, I would say, yes, I would definitely not want to be an albino," said Varnado, who grew up in Huntsville. Ala. "But you ask me now, I would say, no, because I would be a different person and I kind of like who I am."

For more information about albinism, visit the National Organization for Albinism and Hypopigmentation's Web site.