Are those with vitiligo being pigeonholed into stories that only represent them through the lens of vitiligo

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Last year, model Winnie Harlow, a spokesperson for vitiligo, called out the Evening Standard for referring to her as ‘Canadian vitiligo sufferer’. In a powerful Instagram post, she wrote, ‘I’m not a Vitiligo model. I am Winnie. I am a model….and I happen to have vitiligo.’ 

Harlow was the first model with vitiligo to walk the runway in the Victoria’s Secret Fashion Show in 2018. CoverGirl also launched a foundation campaign that same year, which featured model Amy Deanna, who also has vitiligo, alongside the tagline ‘Why blend in when you can choose how to stand out?’. Brands like Primark and Missguided have also followed suit, featuring models with vitiligo in their advertising. 

It’s ironic that the fashion world, historically known for perpetuating a narrow standard of beauty, has taken positive steps in the last few years towards representing models with vitiligo. Ironic, but all too important. For consumers, and particularly young people, this not only allows them to see people who look like them on major fashion platforms, but also sends a key message: if fashion outlets set the parameters for what beauty looks like, then that means a woman with vitiligo can be and is seen as beautiful. 

It’s for similar reasons that the representation of vitiligo in other media outlets – such as art, literature, film and television – is critical. These are mediums for storytelling, and stories are at the heart of how we relate to each other as people. To be excluded from the stories being shared within a society is to be excluded from that society. Film and television, sadly, have lagged behind when it comes to this sort of representation. Beyond a few independent productions, it’s hard to think of any major films or TV shows, which feature even secondary characters with vitiligo, let alone protagonists. 

But let’s go back to Harlow’s comment: ‘I am Winnie…and I happen to have vitiligo’. Although she’s a spokesperson and fierce campaigner for vitiligo, she refuses to be defined by her condition, to be put in a box labelled ‘model with vitiligo’. And that’s the inevitable risk that arises with the media’s representation of vitiligo, or indeed of any minority group: are they being pigeonholed into stories that only represent them through the lens of vitiligo? Is it truly their story being told or is a story about vitiligo, with the person as an afterthought? 

Bollywood movie ‘Khuch Bheege Alfaaz’ (2018) is one of the few films I came across that did feature a protagonist with vitiligo, and did it well. In it, Archana (played by Geetanjali Tharpa) begins an online relationship with the RJ of a radio show she listens to. Archana is lively, funny and engaging as a character, and her search for love through Tinder presents a relatable reflection of the hurdles of online dating. Her vitiligo is an important part of her story – the teasing and stares she’s had to endure growing up have defined her attitude to life – but it is not the driving force of it.

While well received, the film was criticised for not casting an actress with vitiligo to play Archana, in the same way Hollywood films like ‘The Danish Girl’ and ‘Dallas Buyers Club’ came under fire for not casting trans actors to play trans characters. The power of representation is undermined somewhat when it doesn’t allow for actors with vitiligo to represent their own community and tear down barriers for budding actors entering the industry. An actress applying make-up to emulate vitiligo is almost turning it into a costume of sorts that can be shed after the cameras are turned off. This sort of representation feels tokenistic rather than genuine. 

In an ideal world, we would see women and men with vitiligo on our screens in adverts and fashion shows, in movies and TV shows, played by actors with vitiligo, as heroes, love interests and comedic side characters, whose vitiligo happens to be an afterthought, and not the main focus, of their story. Media is slowly moving in the right direction, with proponents like Winnie Harlow leading the charge in the fashion world, but there’s still a long way to go.

Interestingly, the first ever depiction of vitiligo in art was in 1615 with Peter Reuben’s ‘Venus at the Mirror’. The woman in question is Venus’s handmaiden, holding the goddess’s hair as she admires her reflection. The painting is a sensual celebration of beauty and femininity, and although she isn’t the main focus, she forms an active and integral part of it. And she just happens to have vitiligo.