By Brett Aaron Marlow, he/him
"We're born on a stage," says Donté Mickens, the board chair of NOAH, the National Organization for Albinism and Hypopigmentation, who also happens to have albinism. "It depends what you want to do with it."
Mickens' words sting—hard. For years, I've let the audience dictate my performance. I've absorbed the daily stares and bullying and allowed nonacceptance to be emotional lighter fluid, dousing an already raging inner critic. I've had my fair share of burns, thanks to the unforgiving sun, but the emotional sears did the most damage. From an early age, I felt I had to do more, to be the best, to be the most clever. I overcompensated in every area of my life, foolishly thinking that if I did everything perfectly at an 11, friends, bosses, coworkers, lovers, strangers, would see past my differences, opposite of "Where's Waldo?" physical appearance, my limitations, and my always-blown-up-to-200-percent Google Docs, and view me as “normal.”
Mickens may have said it best: "Take any of the societal challenges around self-image, weight, or [looks], or what society says you're supposed to look like, and albinism is that times one hundred."
After 33 years, I’m exhausted and ready for my next act: radical self-acceptance and advocacy.
So, here it goes: my name is Brett and I have albinism. I've started to accept myself more now see why skincare has been a passion of mine. For one, I’ve been swimming in sunscreen since birth (thanks, mom), and, two: I had to be; I have an inherited genetic condition that limits the amount of melanin in my skin, hair, and eyes, and brings about a set of physical disadvantages—low vision often to the point of legal blindness and nystagmus, to name a few—and a host of other winnable but less understood challenges.
Albinism affects nearly one in 17,000 to 20,000 people across all demographics in the United States, says Mickens, and up to one in every 3,000 people in other countries, such as those in Africa.
In these African communities of color, notably in Tanzania and Malawi, people with albinism (PWAs) are often mutilated or killed for their body parts due to generations of superstitious beliefs and misinformation, says Don Sawatzky of Under The Same Sun, a global organization committed to ending discrimination and violence against persons with albinism and facilitating social inclusion. In the last five years, their advocacy and education work alone has helped to diminish, if not nearly halt the number of attacks and murders that people with albinism have endured due to authority figures in government believing people with albinism’s body parts will bring about good luck during centuries-old witchcraft rituals.
Today also happens to be International Albinism Awareness Day—a deserved moment to recognize not only the struggles those with the genetically inherited condition face, but our triumphs. Because, despite what modern media would like you to see, we’re anything but villains, weirdos, or connoisseurs of perma-shade. We involuntarily wear our stories—and insecurities—on our skin and in our eyes and hair, but we’re not defined by our struggles or condition, we’re people just like you who just want to be seen, heard, and accepted.My hope is to see and give more representation to PWAs in the beauty space. We need more people like Jennifer Renée Rhodes, who founded Ivoree Beauty, a line of color cosmetics and lashes specifically designed for people with albinism. We need more models and activists like Shaun Ross and Thando Hopa on the covers of Vogue sharing their stories, representing our beauty and normalcy, and we need to continue to normalize albinism to help prevent lethal threats to our community.