Concert hopes to raise awareness of albinism
By Greg Mellen, Staff Writer
Long Beach Press-Telegram
Posted: 06/10/2010 04:50:40 PM PDT
Reese Williams, a Long Beach resident with albinism. Vision problems are common with the condition. (Jeff Gritchen/Press-Telegram)
LONG BEACH – North Long Beach resident Reese Williams remembers the taunts from his childhood – being called “Four Eyes,” because of his nearsightedness, “Red,” due to his propensity to suffer sunburns, and, worst, “Albino Joe,” which is self-explanatory.
Dwane Brown of Signal Hill says he’s been called so many derogatory names he can’t even remember them all.
When Central Area resident Lawrence Cooper first applied for a government job he remembers it was just assumed he was handicapped.
Williams, Brown and Cooper are just a few of a rare and misunderstood group: those with albinism. About one in every 17,000 people in the U.S., or about 18,000 nationwide, is estimated to have some form of albinism – the term albino is deeply offensive to some who have the condition.
Even describing albinism can be a minefield. It’s not a disease or a disability. It seems improper to say people are “afflicted with” or “suffer from” albinism. But for skin and hair color and usually poor eyesight, those with albinism are no different from anyone else.
Albinism is caused by a genetic defect of melanin production that results in little or no color in the skin, hair and eyes. And it crosses races, genders and even species. Mammals and even reptiles and plants can have albinism.
On Tuesday night, African singer Salif Keita, who has albinism, will headline at a concert at the Terrace Theater in the first Juneteenth Worldwide concert that, among other things, is meant to raise awareness about the condition.
Despite being of royal descent in his home country of Mali, Keita was shunned and ostracized for his condition and eventually migrated to Paris to pursue his musical career.
Americans with albinism don’t face the stigma it carries in Africa, where dozens have been mutilated and killed for body parts believed to have mystical powers.
However, for a relatively rare and benign condition, albinism can raise strong and often negative reactions.
Mike McGowan, the executive director of the National Organization of Albinism and Hypopigmentation, says portrayals of those with albinism in popular fiction, movies and television have almost universally been negative.
That goes from recent portrayals such as the character Silas in “The DaVinci Code” to the twins in “Matrix Reloaded” all the way back to characters in H.G. Wells’ “The Invisible Man” and “The Time Machine” and even to Herman Melville’s white whale, Moby Dick.
At the other end of the spectrum, according to the Jewish Encyclopedia, in rabbinical literature Noah is described “at his birth as having a body white like snow, hair white as wool, and eyes like sunbeams.”
McGowan says people’s misconceptions range from beliefs those with albinism are mentally challenged or hemophiliacs to more mystical beliefs in African cultures.
None of that is true. What is true is that almost without exception those with albinism have at least some form of low vision.
“Most are legally blind and require low-vision aids,” McGowan says.
The most common obstacle those with albinism face is social and emotional rejection from the general public.
“People who look different are typically shunned,” McGowan said.
Brown, who is homeless, says he deals with it all the time.
“People staring at you and all that stuff,” the 27-year-old says. “I get sick of it every day.”
When he was younger, Williams said taunts and his poor performance in sports because of his eyesight caused him to become a loner. To deal with it, Williams said he spent endless hours riding around alone on buses throughout the county.
“I became cautious,” said the now gregarious Williams, who has parlayed his looks into a post-retirement career as a Santa Claus.
“It’s rough if you let it bother you,” said Cooper.
In Cooper’s case, he says his parents and teachers, other than putting him in the front row so he could see the blackboard, never treated him differently from other children.
As a result, he says he became self-reliant and never looked on albinism as a handicap.
Williams says he was coddled by his mom, but bristled at the treatment.
“I’m normal like anyone else,” Williams says of comparisons between himself and those he calls “normies.”
“I don’t consider what I have handicaps, they’re more annoyances,” Williams says. “I’d love to be a sun bird.”
Williams, Cooper and Brown say they just want to be treated like anyone else.
“It’s just something nature popped up with,” Williams says of albinism. “There’s no cure. You just live with it. What are you going to do? Toss (those with albinism) in the closet and leave them there? Wrong. You help them.”
Williams, a staunch Republican, says those with albinism don’t need any special favors, they just need to be given the same chances as anyone else. And people need to understand.
Cooper says those with albinism just have to engage the world like anyone else.
“If you segregate yourself from people, then, hey, they’ll treat you like you’re different,” Cooper says.
Now retired, Cooper said he sees a man with albinism around town who collects cans and wants to offer helpful advice.
“I wanted to say, ‘You don’t have to put yourself in that predicament.’ I wanted to tell him, ‘You can get a job, you don’t have to put yourself down.’ If you feel that way and you put yourself down and hide in a corner, then the world can’t reach you.”