So, what is vitiligo and why don’t we see it on screen? Well, you came to the right place! I, a vitiligan, am here to tell you what vitiligo is, guide you through the representation (or lack thereof) of vitiligo in the media, and to share how you, the reader, can make a difference!
“I have my flaws, but I embrace them and I love them because they’re mine.”
Winnie Harlow
When I was 9 years old, I noticed something that seemed odd on my right shoulder after putting on my favorite floral tank top: a small grouping of light splotches on my skin. While I initially shrugged it off and simply enjoyed my tank top and ice cream summer, I, as well as my parents became concerned when patches started to form in other areas: my arms, legs, knees, thighs, feet, and most notably, my hands. While scary at first, our pediatrician confirmed through blood tests that it was nothing to be concerned about: it was simply vitiligo, an autoimmune disease in which the immune system attacks the body’s pigment producing cells, melanocytes. Although there weren’t typically any physical complications to the condition itself, the experience of having the “patches” was not as risk-free. This mostly came in the form of backhanded, and downright hurtful comments.
Do you have skin cancer? Is it contagious? Is there something wrong with your skin? My answers were always the same: No, no, and no. They were all questions I, and as I later learned many others that shared my condition, became very familiar with. However, one question in particular that I would often ask myself, as a young girl trying to grasp this new normal, was: Why do none of the people on TV have skin that looks like mine? A question that I now like to think of as:
“Well, Where’s The Patchwork?”
It’s a fair question, and one I’ve asked myself many times. As you may expect, there aren’t many well-known actors or actresses in the industry that have vitiligo or that share their experience with the condition. And yes, there is a reason, or in this case, reasons for that.
- Vitiligo and beauty standards
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If you knew what vitiligo was prior to reading this article, there is probably a pretty familiar name that came to your mind: Winnie Harlow. If you were thinking of Winnie Harlow, you were correct! Winnie Harlow is a prominent model, who yes, does have vitiligo. And a pretty well-known model for that matter (mainly because of her skin condition). Harlow more specifically has generalized vitiligo, which appears across the entire body, including the face. So, Harlow is well-known for the uniquely beautiful pattern that frames her face. And while you and I may think of Harlow as beautiful and unique, she, and many others with the condition, have not always been seen that way, even today. Vitiligo is often seen by those who are unfamiliar with the condition as simply unhygienic, deviant and “unusual.” This, clearly, is not the case. However, these perceptions contribute to existing beauty standards in which even skintones, especially lighter ones, are preferred. This further creates harmful images of what is beautiful or “aesthetically pleasing” and often contributes to low self-esteem, anxiety, and depression in individuals with vitiligo. For this unfortunate reason, many individuals with vitiligo are not hired in the industry, as they do not represent the traditional image of “attractiveness” or “beauty,” the faces that are much more often preferred for big roles on your television screen.
- historical implications
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As I briefly hinted at, vitiligo has a history of being underrepresented in the media. In fact, pop sensation and actor Michael Jackson was diagnosed with vitiligo in the 1980’s, only officially disclosing his condition in 1993. Jackson is often cited as one of the first well-known public figures to openly have vitiligo. Although, in Jackson’s case, the lack of knowledge surrounding the condition sparked harmful rumors, especially prior to his official disclosure years later, with many accusing Jackson of bleaching his skin to appear more “white.” Michael Jackson’s experience with the condition shows that vitiligo as a condition is often underrepresented and even erased from the public eye, especially in the past, prior to the development of extensive vitiligo research. To this day, many people remain unaware of the condition in the current acting sphere, with prominent actors and actresses such as Jon Hamm (Mad Men), Steve Martin (Father of the Bride, Cheaper by the Dozen), and Holly Marie Combs (Charmed, 90210) being widely unknown as having the condition by the general public.
- How rare is it really?
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It is a common misconception that vitiligo is a rare condition. In fact, vitiligo is relatively common. Northwestern Now states that about .5-2% of the global population has vitiligo. While that may seem like a small figure, that equates to about 65-70 million people worldwide. According to News Medical, that’s the same level of prevalence of those that have arthritis worldwide (a pretty significant number)! So, while you may think that vitiligo is a rare condition, and you don’t really see it that often, this is not the case. It is also important to keep in mind that these numbers only include those that have been diagnosed with the condition, many people who have vitiligo don’t even know until well into their adult years. So, not really all that rare, now is it?
HOw Do We INcrease “Patchwork” Representation?
So, you’re probably sitting there reading this article, thinking: Okay Aly, but how can this problem be fixed? Yes, that’s a great question, and I have an answer! While the answer may seem simple it’s actually quite the opposite: hire more people with vitiligo. This is a process though, as is increasing the awareness and representation of many conditions in the media. In order to increase hiring rates, and therefore increase vitiligo representation, we first have to raise awareness and public knowledge of the condition. Which is where you, the reader, step in! Talk about it. Voice why this is an issue. Or, if you really want to take it a step further, advocate! Support the Vitiligo Research Foundation. Read the articles, listen to the podcasts, if you are able (or want to), donate to the cause. That’s how real progress is made. And I know, myself, and many others would appreciate that support. So maybe we will no longer have to ask the question: Where’s the patchwork?