White Face, Brown Past: On Vitiligo, Identity, and Ignorance

cw: mention of eating disorder, rape, abuse, body dysmorphic disorder

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There’s a reason World Vitiligo Day is on the anniversary of Michael Jackson’s death.

Before I was diagnosed with vitiligo, even before I any idea what “vitiligo” was, I remember making jokes about Michael Jackson’s skin. In conversations with other people I remember joining in with judgment and criticism because I, like them, thought he was bleaching his skin or trying to turn his skin white.

Joke was on me, though. I spent years, and occasionally still deal, with strangers asking me if I’m a burn victim, why I’m bleaching myself, and why I want to be white. If not for incredible friends during those years I don’t know what would have happened to me. People rarely discuss the alarming rates of people with vitiligo who kill themselves due to the psychological pain caused by the disorder.

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I’m glad that there is more representation in the media with respect to vitiligo, and I sometimes forget that I am a part of that representation in the fashion and activism world given my own advocacy work, but there are still people around the world who DO suffer because of vitiligo. I don’t anymore. Many people don’t anymore. But some people do and it’s partly due to other people and their ignorance, cruel jokes, and lack of education about the disorder.

Vitiligo is not contagious. Vitiligo is, sometimes, accompanied by other autoimmune disorders that impact people’s lives in more ways than just skin changes. Also, even though people don’t really mention this, people who are Black and Brown can be impacted in ways others couldn’t understand because of the physical proximity to whiteness. I, personally, struggled with that issue for a long time and once upon a time planned to get a ton of surgeries to make my features look different on my future white face.

As someone who grew up with body dystrophic disorder, my vitiligo diagnosis at 15 made my life so much more difficult in that regard. I was three years into an eating disorder that would last another 7 years and felt so out of control. I couldn’t control my experiences with abuse, I couldn’t control my violent bullies at school, I couldn’t control my family members’ deaths, I couldn’t control my friendships or my rapidly changing identity, and now I couldn’t control my own skin. My Blackness was already something I was having trouble making sense of and literally starting to lose my melanin made everything worse.

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Fast forward to the years I spent addicted to makeup. I wouldn’t leave my bedroom without a full face of makeup, a scarf, gloves, and full body coverings. Even in the summertime. I talk more about this in the Allure X StyleLikeU Dispelling Beauty Myths campaign that went viral and resulted in THOUSANDS of messages from people whose lives I impacted. I couldn’t believe it. I was shocked by how many lives I was changing, the comments of encouragement people left below my video.

After that, I’d go on walk the runway with Gypsy Sport at New York Fashion Week, get my first digital Vogue feature, and eventually sign with a modeling agency, WeSpeak. I’d go on to give talks and be a guest on shows and a mentor to other people with vitiligo. It all felt surreal but I felt so comfortable sharing my story because I knew that it would help someone. Even a single person.

I’m not as vocal about my experiences with vitiligo now because it’s become such a deep and personal journey of self-discovery. My ideas about race and body image have changed so drastically over the last few years and taking about vitiligo can be triggering at times. One of the first people to joke about my skin was one of the guys who raped me. “I’m not really raping a Black girl, though, am I?”

All things considered, I thought vitiligo would be the last straw for me. I never thought I’d make it to 29. It’s weird going from being a suicidal teenager who legitimately expected to be dead by 21 to whatever it is I am now. I’m happy and thankful to be alive. I’m thankful that my mental and chronic illnesses are something I’m able to navigate now without harming myself. I’m thankful that I no longer care about being beautiful or pretty or attractive. There are more important things in life to me.

I’m also thankful that I’ve embraced the fact that my journey will never be the same as anyone else’s journey and what helps someone else stay alive is none of my business. If there is no harm being done, it’s one of my business. I’m always open to educating people about vitiligo. I’m always ready to go off on people who make fun of others with vitiligo. I’m also ready with a hug and a smile for another person with vitiligo I happen to meet on the street. We’re family. They get it in a way no one else ever will.

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In honor of World Vitiligo Day, I’ll leave you with this: in the grand scheme it doesn’t matter if you’re Black or white. Given the ways in which structures, systems, and institutions impact our lived experiences, though, it does matter. Our identities directly influence how we are treated by others. How we look, communicate, and exist in the world will be met with varying reactions and responses. Anything deemed strange, abnormal, or ugly can make you a target to the world. Safety comes first. Live your truth in the ways that feel safe to you. Every new moment is another opportunity to surprise yourself.

Finally, white people, stop making jokes about how your tan makes you darker than me. I don’t fucking want to hear it.

Written by

NYC-based philosophy graduate student whose work covers Genocide Studies, Repro + Enviro Justice, and Critical Race Theory. @moontwerk

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