What is Beauty? With Hannah Harpin

What is beauty?

Beauty is in the eye of the beholder. A proverb we’ve probably all heard countless times, and maybe even said. But ‘beauty is in the eyes of the beholder’ also has a literal meaning, which is that when we see things we evaluate the beauty of those things on our own standards of aesthetics. So in theory what beauty is, or who is beautiful, is highly subjective, and unique to every person. Except of course it’s more complicated then that, and we learn early on what the accepted and expected standards of beauty are in the society and culture in which we are growing up. We see what we are shown, and by and large this does not seem to readily include disabled people, and those living with rare conditions. But Hannah Harpin is determined to challenge that, to be the change, to help make society’s definitions of beauty change, and grow to be more inclusive, more real, more true. Hannah has always known she wanted to be a model, but at the age of around eight years old when she shared this dream with her class another pupil told her she’d never be a model ‘with the way she looked.’ Comments like this, and worse, were often thrown in Hannah’s direction, making her recent signing with the model agency Zebedee all the sweeter for Hannah. Because as Hannah explained, it is “really, really special because now that I am a model, I can just say to my younger self that I did become a model.”

Hannah’s formative years were framed by the bullying she received, because unlike some invisible rare conditions and hidden disabilities Ectodermal dysplasias (ED) typically involve defects in the hair, nails and teeth. Shortly after birth, her parents noticed that she had a cleft palate. It was also noticed that whilst Hannah had been born with hair as this naturally fell out none grew back to replace it. All these signs pointed towards Ectodermal dysplasias but it took around three years for Hannah and her family to receive a proper diagnosis. Hannah remembers that from an early age other children would stare at her in the street, and to her it felt as if even from that young age the other children were starting to see and learn that there are differences between people, and that because they didn’t know how to communicate that they’d start to make fun of her instead. Now that she’s older Hannah can articulate that she’d prefer people to approach her and to ask her questions rather just stare at her. Hannah recounts how once a little boy asked her why she was wearing sunglasses when it wasn’t sunny (Hannah is photosensitive), but his parent’s quickly told him to stop being rude, to not ask questions. But actually, in doing so, discouraged the natural curiosity a child feels and taught him that there was something ‘wrong’ that shouldn’t be talked about, that there was perhaps even something to fear. Hannah’s first experience of taking part in a photo campaign came when she was just nine years old, and she took part in a Jeans for Genes day, this led to Hannah being featured in an article in the Daily Mail, and being interviewed on the Radio. These early positive experiences were rare bright points against a darker background of bullying, of struggling, of trying desperately to fit in. Growing up in an era of social media Hannah was subjected to horrific online bullying, and throughout high school had to live with seeing her peers make fake social media accounts about her. But it is testament to Hannah’s inner strength that she chose to meet this head on, often trolling the trolls back. As Hannah explained although she’d never troll anyone based on their looks, she did push back, to show that she didn’t care, that their actions were not affecting her, because if she showed that they were affecting her they’d do it more. It says a lot about Hannah that later on in our conversation when we touched on her early experiences again she told me how bad she’s felt when, after leaving school, she saw the horrible online bullying continued, but this time targeting a younger girl. After a few years another disabled girl had joined the school, and Hannah had taken her under her wing. Hannah shared ‘I remember when I left that school, I used to see all of the social media, the snapchat stories filming her, laughing about her and I felt bad because usually I was the one to get picked on.’

Hannah photographed by Ceridwen Hughes for Same but Different

Although Hannah has had to learn to be strong, she looks fragile. Indeed Hannah is at times mistaken for someone undergrowing chemotherapy, both her baldness and her pale skin as well as her slender frame allude to this sense of fragility, a beautiful but breakable girl. In both her modelling and in real life Hannah plays on this through creating looks which are both strong and striking. As a younger teenager Hannah experimented with looks that would help her to fit in, using clothes, make up and wigs that would make her blend in, indeed it was only in 2019 that Hannah felt able to share a photograph of herself on social media without a wig on, and to embrace her bald head. Hannah no longer tries to hide her true self. Indeed, for Hannah claiming the attention she has always received is perhaps almost cathartic, as she explains now that she is older she has chosen to dress in a very gothic, alternative way so that she’s giving people another reason to look, something to stare at rather than simply staring at her. Hannah is quite simply no longer trying to hide her true self, to fit in, but to challenge stereotypes, to stand out, to be seen, and with that to be heard. Because as Hannah said if people knew more about her condition, and about rare diseases, and both hidden and visible disabilities maybe they’d be more understanding. Whilst studies have shown that the recent and repeated lockdowns have been hard on teenagers it was the boredom of lockdown that helped Hannah to make her dreams come true. Hannah began making and sharing TikTok videos, some of which went viral, bringing her to the attention of the producers from the ‘Shake My Beauty’ TV series, and in early 2021 Hannah was signed by Zebeedee Management. For Hannah stepping back in front of the camera has made her feel strong, confident, like herself again, the self she was before she was bullied, before her dreams were laughed at. And now she’s allowing herself to dream big again, to dream about one day being featured in a huge campaign that sees her photos hanging front and centre as you walk into a busy high street shop, or walking the runway in London Fashion Week. Now nineteen years old Hannah is both ready and excited to unfurl her wings and to fly.

Hannah photographed by Ceridwen Hughes for Same but Different

What is Ectodermal Dysplasias ?

Ectodermal dysplasias (ED), are a group of at least 150 inherited disorders that can involve defects in the hair, nails, sweat glands and teeth, and Hay-wells Syndrome is one of these disorders. The ectoderm contributes to the formation of the lens of the eye, parts of the inner ear, the fingers and toes, and nerves, among others. Therefore, ectodermal dysplasia may cause these parts of the body to develop abnormally. The symptoms can range from mild to severe, and although here are no cures for ectodermal dysplasias, there are many treatments available to address the symptoms.

You can find out more about Hannah and the Days of Rare project by visiting www.samebutdifferent.org.uk/daysofrare