America’s Next Top Model, a show ostensibly about judging people by their looks, is expanding the typical standards of beauty. Over the course of its many seasons, Tyra Banks’ reality competition has featured contestants who don’t fit into the regular supermodel standards: aspiring models who are transgender, bald, or even taller than 6 feet. A plus-size contestant won in season 10. But none of these contestants, even as fabulous as they were, affected me as much as the one who shares my skin disorder: Chantelle Winnie.
As Winnie explained so patiently throughout last year’s season 21, vitiligo is an auto-immune disorder whose sufferers lose pigment, which is a protective barrier for your skin. It varies in degrees but usually appears on extremities like hands and feet. More extreme sufferers have it all over their bodies, even their faces. The result is that their skin looks more like a cocker spaniel than a labrador. And the change is more obvious for African Americans. Winnie has a breathtaking and unusual symmetrical pattern, which Banks, who says she “discovered” Winnie on social media, called “symmetrical white fantasticness.”
I didn’t start seeing those white vitiligo spots on my skin until I was in my 20s. My mother had it on her hands and feet, and her father wore long sleeves most of his life to cover his spots. Out of 13 cousins, I believe I’m the only one who has it. I have olive skin, but it’s pretty fair, so in the winter I almost forget about it. This time of year, when I tan just stepping outside, it starts up all over again, and I discover new spots I didn’t realize I had. (Last year: a small horizontal oval on my neck, the size of a quail egg.) It’s mostly on my hands and feet but also on my knees, and it’s creeping up under the underside of my arms.
Even though mine has been a relatively minor case so far, I have nonetheless been subjected to pointed questions by young children (understandable) and idiotic questions by adults. I once ran into a friend of a friend who I hadn’t seen in a while, and she asked me if I was a burn victim. It still bugs me when I remember how meekly I answered her, explaining my condition. I wish I would have retorted, “What kind of question is that?” I sometimes believe people are hesitant to shake hands with me, as if what I have is catching. I also had a friend ask me, almost exasperated, “Haven’t you done anything about that yet?”
Believe me, I have tried. When my vitiligo progressed from tiny spots to larger patches, I examined all sorts of options. One involved standing in a tube like an idiot for 15 minutes a few times a week at a major university dermatology lab, with very little effect. On the internet, I found a link between vitiligo treatment and acupuncture. I learned to love my acupuncturist, who was very supportive and said that he had had luck with this kind of treatment. He told me that vitiligo sufferers have great degrees of depression and also higher suicide rates than average, which shocked me. I enjoyed the acupuncture (it certainly was relaxing), but it was also expensive, and I didn’t see much improvement.
A woman once approached me at a conference. She was a makeup artist and wanted to know if I would come to one of her classes to help her students learn makeup techniques for burn victims. It was the closest I’ve ever come to a modeling career, but I figured it was for a good cause. And it was a surreal experience, to say the least, to have a bunch of aspiring makeup artists dab my arms, legs, hands, and feet with foundation sponges. The teacher said as she welcomed me, “Look at you, you’re so great: You’re wearing short sleeves.” It was August. As her students blotted my skin, the teacher suggested that I could do a makeup treatment like this “for a special occasion.” I’m already married, so outside of wedding pictures, I’m not sure what occasion would be that special. Plus, it didn’t look that great, despite all their efforts. The only thing worse than vitiligo is a failed attempt to cover it up.
I visited one vitiligo support website after another, but instead of solutions for this so-far incurable condition, they offered platitudes: We should learn not to focus on physical appearance, true beauty is found from within, and so on. Like many people who work in an office, I spend most of my day looking down at my hands on my keyboard. So I futilely watched every day as they turned more from tan to white, and dreamed of a quainter era when ladies wore gloves.
All that said, there are worse diseases to have. Vitiligo doesn’t even hurt, unlike psoriasis, say, and although I am apparently more vulnerable to skin cancer due to lack of pigment, it’s not so hard to slather on sunscreen. Still, I wondered at one point, since vitiligo is hereditary, if I should even have kids. My college boyfriend’s sister, who I wasn’t even that close to, asked, “Would you rather have never been born?” Well, no. So I have kids. Part of my effort to “heal” my vitiligo was so that I would have some sort of solution for them if they wound up with a bad case of it later.
And now, more people add decoration to their own skin than ever before. I spy full-sleeve tattoos and henna patterns on hands that don’t look that different from mine. I remember at one point last summer sitting around at a punk concert after-party and feeling completely comfortable for once, as everyone in the room was marked up. I’m a tattooless fortysomething, but I have a twentysomething friend who loves my skin and told me, “You should totally rock that.”
But she was the only person I had ever heard express such an opinion—until I saw Chantelle Winnie on America’s Next Top Model last season. The now-21-year-old African-American was called names like “cow” as she grew up with this condition that changed her dark skin to a black-and-white landscape. Recently, she contributed an essay in Cosmopolitan about how much she was bullied growing up because of her condition. But fortunately, she grew up in a supportive environment. So even at her young age, she has a fierce tenacity and an amazing sense of self:
I didn’t have a problem with myself or my skin. I had a problem with the way people treated me because of my skin. They tried to define me. I had to relearn how to love myself by forgetting the opinions of everyone else and focusing on my opinion of myself.
Chantelle Winnie was striking from the start. She was the second female contestant we met on camera, and the first to be presented to the judges, where Tyra marveled at her elegance and Miss J praised her eyes. Explaining her condition to the camera, she declared, “It’s me, it’s who I am, and there’s nothing to fix.” For the initial runway show, the models covered themselves in blacklight markings that honestly didn’t look that different from what Winnie’s. For that runway, the models were instructed to choose their own hashtag, and many picked adjectives like #fierce, #saucy, or #sarcastic. Winnie chose #oneinamillion. Another contestant called Winnie out as the biggest competition.
In her episode two photo shoot, Winnie matter-of-factly explained her condition when photographer Yu Tsai asked her about it, and he replied that she’s like an “X-man.” During her shoot, he called out, “If other people are watching, this is what it means to have confidence. And confidence is beautiful.”
Perhaps Winnie’s condition and childhood bullies caused her to have a thicker skin than most; the other contestants didn’t really take to her, citing her as almost too confident, and Winnie surmised that the way she grew up probably had something to do with that. Many of the other contestants had also undergone hardships. Lenox’s father had just died. Shei was occasionally homeless as a child. Mirjana alluded to being in previous abusive relationships, and died soon after the season in a triple homicide in which her boyfriend was also killed. For Winnie, though, as she put it, “A lot of people have a story or a background, but mine is painted on my body.” Her struggle was right there on the surface, impossible to hide from. I know the feeling of not being comfortable in your own skin, and it’s an awful feeling to have.
Winnie was eliminated in episode four, came back in episode 10, and eventually landed in the top 10 out of the original 31 contestants. Even though she didn’t win ANTM, she is still successful in her field, like many reality show runners-up. She is now a model for brands like Diesel and Desigual and has appeared on runways from New York to Madrid. She’s not covering anything up. She, as my friend would say, is rocking it.
Winnie pleaded on camera, “I want you to be able to see the beauty in every person who has a disability, a mark, a scar. How can I show you the beauty in differences?” It was like she was pleading with me. I choked up, something I never thought would happen to me while viewing ANTM. Watching her fearlessly strike a pose on the runway, for the first time I wondered if I should forget about fighting something that seems to be inevitable anyway, and just embrace it.
Why shouldn’t I get a manicure, even if it will draw attention to my multi-colored (not discolored) hands? Why should I try to cover myself with bad makeup when people with other unusual physicalities don’t have that option? What if rocking my vitiligo would help my children tackle any future challenges better than “fixing” it could?
In her essay, Winnie remembers the first photographer who wanted to take pictures of her, writing, “It’s amazing what a little encouragement can do.” I would tell Winnie that her effect on me has been just as amazing. Her glamorous pictures, and her undeniably self-accepting persona, changed my entire perception of my own skin. After dealing with this condition and wanting to cover it up for decades, this is the first time in my life that I’m seeing vitiligo celebrated. Winnie is more beautiful because of her skin, not despite it.
So I now view my own changing skin patterns with new eyes. I will probably never be able to consider my vitiligo a blessing. But thanks to this fabulous young model, I no longer consider it the curse I once did.