Sweatpants & Equality | Living With Albinism: Why Words Matter

By Natalie DevoraNote: Dick Gregory is a civil rights activist and comedian. Ms. Devora addresses his recent appearance on New York's Power 105.1 radio show, The Breakfast Club (linked in text).An Open Letter to Dick Gregory and the hosts of “The Breakfast Club” Radio ShowWhere do albinos go after high school? What an offensive and ridiculous question. How could you be so myopic? In a matter of minutes and without regard, you managed to stereotype and disrespect people with albinism.I listened to the 9-minute Youtube clip by Dick Gregory and “The Breakfast Club” radio program several times in an attempt to understand it. After my initial shock, I became angry because yet again I, along with others with albinism, was the target of someone’s stupidity. As the days wore on, emotions lingered, namely, hurt. What bothered me most was the complete lack of sensitivity.First and foremost, we are not albinos. We are persons with albinism (PWA). We are affected with a rare genetic condition which renders us without pigment. Our vision is impaired and we must take precautions to protect our skin. Albinism occurs in every culture worldwide. One in 18,000 people are born with albinism in the United States while one per 3000 people is affected in other parts of the world. The National Organization for Albinism and Hypopigmentation (NOAH) provides a wealth of resources and information..One of the Breakfast Club hosts jokingly said, “Albino lives matter.” “Albino lives” matter so much that the limbs of PWA are cut off and sold for thousands of dollars in many parts of East Africa, Tanzania in particular, by witch doctors because the belief is that body parts harvested from PWA guarantee wealth, success and good fortune. I know this firsthand, having met victims of such atrocities while journeying to Tanzania five months ago.

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I met children living in protectorate centers; often PWA are shunned by families and community. I met a mother whose son, age 2, was wrenched from her arms by attackers. I listened to their stories, knowing full well the challenges I grapple with, while significant, pale by comparison.I became acquainted with leaders from 29 African nations as we strategized at the first Pan African Albinism Conference; the conference was sponsored by Under The Same Sun, a Canadian NGO dedicated to helping people with albinism to overcome often deadly discrimination through advocacy and education. What struck me most about my peers was the varied hues of albinism amongst us.I am accustomed to being gawked at and talked about as though I cannot hear. On a good day, I’m Teflon as the words of others slide off me. Yet on other days, I am pierced. Your callous use of language, perhaps uttered in jest, wounded me. When I was a child after returning home from school in tears one time too many, my mother taught me the phrase, “Sticks and stones may break your bones but names will never hurt you.” I clung to this mantra. But the truth is, names and statements made out of ignorance cause significant harm.Where do albinos stand on Black Lives Matter?—another question posed by the hosts. I cannot speak to how everyone who is African American living with albinism views the BLM movement. I can only provide my personal stance.Color and identity for me are complex. I am a white-skinned Black woman. Sometimes I am assumed Caucasian. I’m not always accepted by some African-American people. Experience has taught me when one is at either end of the color spectrum, it’s a problem. Which means many People of Color with albinism, myself included, struggle to find acceptance within our communities. While I may be perceived as other than who I am, my family fares differently. I’m acutely aware of the discrimination they experience. Consequently, I question and challenge injustice directed at them. I know always that I am Black first and a PWA second.To the hosts of the Breakfast Club, your show is syndicated and reaches listeners across the country. Rather than fuel myths and stereotypes, you could have chosen to focus your show to strive for greater good. Understand that The Breakfast Club is not the first entity to objectify albinism and likely they will not be the last. Hollywood has a history of typecasting PWA in a negative light as in films like Powder, The Da Vinci Code, and The Matrix, to name a few.And so, Mr. Gregory, I thank you for a valuable lesson. In lieu of being silenced, I shall remain vigilant against ignorance. I am charged with a renewed commitment to do my part alongside my comrades to educate and advocate for greater awareness and understanding about albinism here in the United States as well as abroad. We shall no longer be marginalized or bullied, for oppression has never been amusing. This post first appeared on Medium.Natalie Devora is a writer and Albinism advocate from the San Francisco Bay Area. She is currently working on a memoir titled Black Girl White Skin.