Living With Albinism


Own Your Beauty is a groundbreaking, year-long movement bringing women together to change the conversation about what beauty means. Our mission: to encourage and remind grown women that it is never too late to learn to love one's self and influence the lives of those around us - our mothers, friends, children, neighbors. We can shift our minds and hearts and change the path we follow in the pursuit of authentic beauty.

I use most of my blogging keystrokes to encourage women and girls to celebrate themselves and to feel good about the skin they’re in ... regardless of skin color, cultural background or their perceived imperfections. I tend to think of all of us as perfect ... in an imperfect kind of way ... and I like it.

Take me for example: I have a few crooked teeth, a few extra pounds, a bubble nose with nostrils that tend to flare, my feet don’t look that great in sandals, and my rear end used to sit up a little higher ... and I like it. I am perfectly imperfect and it makes me ... well ... me. But my road to acceptance was, like many others, a little rocky.

As a kid growing up in the Land of La La (aka Los Angeles), I got teased mercilessly (it’s called bullying, actually) for my proper use of English and my confident yet soft demeanor (I’m an only child). Like a brand-new colt struggling to get its footing, I often felt awkward and not-so-perfect as a teen, particularly since the culture in Los Angeles lends itself to celebrating outer beauty and not the glory of what’s inside. In my mid-20s, I did a stint in the modeling scene, but quit to work in the music business after I returned from Europe (where I signed with my first -- and last -- Italian modeling agency). And as if the bullying and fauxness of the modeling industry wasn’t enough to bruise a girl’s self-esteem, I dated at least two guys who, unsolicited, offered to get my nose done, as well as an actor who told me breast implants wouldn’t hurt. Well isn't that just perfect?

But I’m perfectly imperfect, right? Like BlogHer says, I own my own beauty. Hmpfh. In spite of all of the racial and cultural bias in the world, the offers of a nose job to fix my im/perfect bubble nose, and all of the perfect (cough ... airbrushed) images we all continue to witness in the media, I have managed to feel comfortable in my own skin.

Diandra Forrest

Photo by Shameer Khan, courtesy of Diandra Forrest

Kind of like super models Diandra Forrest (check her out in this video about women with albinism), Shaun Ross, Jessica Langlois and Connie Chiu, and non-supermodels like Syiedah Wilson and Tina L. Olson Markel's daughter Josie (pictured below) who -- as people with Albinism -- have owned that they are perfectly imperfect in their own special way.

Syiedah Wilson

Syiedah Wilson


Tina L. Olson Markel's daughter Josie

Albinism, as you probably know, is a relatively rare condition in humans (approximately 1 in 20,000), animals, and even plants, in which a person (no matter their cultural and/or ethnic background) or animal doesn't have the usual amount of pigment or color in their skin causing a pale white appearance and mostly blue, and otherwise brownish or red/pink appearing eyes. Since the iris has so little color, the eyes appear pink or red because the blood vessels inside of the eye (on the retina) show through the iris. [] It is also interesting to note –- per -- that most forms of albinism are the result of the biological inheritance of genetically recessive ... genes ... passed from both parents of an individual, though some rare forms are inherited from only one parent. Interesting, isn't it? Oh. And just so we're clear: If you think for one minute that Albinism is a disability, think again. I was getting my Facebook on with some people on the Albinism page, and the general consensus is that Albinism in and of itself isn't a disability, although the partial blindness and sight disorders that often come along with Albinism most certainly are.

I have seen a number of people with Albinism in my lifetime in passing and never really thought too much about it other than it's a really cool and unusual look, but I certainly never thought of this rarity as anything other than that. So you can imagine how alarmed and surprised I was to learn about the blatant discrimination and killings (!!!!) of people with Albinism based on superstition and on the color of their perfectly imperfect skin. Click here to check out a compelling video about an African girl with Albinism and her life in South Africa. You won't believe it. And then check out the video below about a Tanzanian refuge for those with Albinism who are trying to escape being killed for their body parts. Yes. I said killed for their body parts. One arm or one leg can get $1,000.You see, the tradition of creating potions out of the limbs of people with Albinism is common with some witch doctors in parts of Tanzania. Lordy. I swear, no matter where you go in the world, there is some superstition that needs to be put to rest ... immediately and permanently. Check this out:

Horrible, isn’t it? Horrible that someone’s perfectly beautiful imperfections make them a target for witch doctors and, in the U.S., nut jobs. My new Facebook friend Susan Leslie DuBois "was so deeply disturbed by the stories of the murder of people with [A]lbinism in East Africa that [she] started a non-profit group dedicated to helping, called Asante Mariamu." Even better is that recent news reports that the first person with Albinism has been elected to the Parliament in Tanzania. Now how perfect is that?!

I really admire those with Albinism who -– in spite of being made to feel as if their rarity is a curse, a shame and far from perfect -- grow up embracing their perfect imperfections and go on to be supermodels or school teachers or record executives or grocery store clerks. Some of us should probably take note.

I use most of my blogging keystrokes to encourage women and girls to celebrate themselves and to feel good about the skin they’re in ... regardless of skin color, cultural background or their perceived imperfections. I tend to think of all of us as perfect ... in an imperfect kind of way ... and I like it.

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