PHOTOGRAPHY Nicole Ngai
CREATIVE DIRECTION Tori West
WORDS Erin Tatum
PRODUCTION Chiara Maculan
STYLING Baillie Jones
MUA Kate Glanfield
HAIR Ash Hill
FASHION ASSISTANT Alana Davids
WEB BANNER Nikki wears Coat: BIMBA Y LOLA, Top: SUSAN FANG, Tights: WOLFORD, Scarf: STYLIST’S OWN.
Nikki Lilly is spreading her wings. Basking in the afterglow of being named Beauty Creator of the Year at TikTok’s annual awards ceremony in November, the activist is still walking on air after gracing the runway for Matières Fécales at Paris Fashion Week. The transgressive brand is known for playfully flipping off the status quo. Though founders Hannah Rose Dalton and Steven Raj Bhaskaran adore cheekily embracing stepping out of the norm, their Paris Fashion Week show had a distinctly glamorous bent. Nikki turned heads in a floaty, ethereal gown.
“They had so many requests for it and just didn’t feel like the people that were requesting the dress aligned with their values,” Nikki recalls. “Matières Fécales is all about challenging the fashion industry, redefining what it means to be a model, and being more inclusive. And so when my stylist requested the dress, they said, ‘This is a match made in heaven because the things we believe in and stand for are all about changing stereotypes and pushing boundaries’.”
Nikki was initially apprehensive about the prospect of setting foot in fashion’s most closely watched arena. “I can’t walk in a straight line, let alone on a runway,” she jokes. The significance of representation spurred her onwards: “Even though I was so scared because it was unknown territory and I couldn’t say it’s something that I ever expected to do, I knew that it would be such a big moment for people with facial differences. I think I’m one of the first people with facial differences to walk in a Paris Fashion Week show. The thing that kept me going leading up to it was that this is bigger than me.”
Haute couture anxiety aside, she’s no stranger to the limelight. Following her diagnosis with a rare condition known as high-flow craniofacial arteriovenous malformation (AVM) at age six, Nikki became a fierce proponent of inclusion, positivity, and resilience. During her childhood, she achieved everything from hosting her own shows and starring in documentaries to being the youngest BAFTA recipient, winning an Emmy, and gracing the Guinness Book of Records. That media chrysalis has yielded an unstoppable force. Now 21, she’s amassed millions of social media followers and aims to assert her sphere as a place for camaraderie.
She’s boldly flying on the winds of change and deft in her navigation of both adulthood and an evolving online landscape, carefully curating outputs while maintaining private boundaries. “Hopefully it’s a step in the right direction for change and to show big designers and big brands not to fear difference. If anything, differences are beautiful, differences are special, differences are more interesting. Fashion is so close-minded the majority of the time, so it felt like a real moment to make history. What I loved about the runway show is that I was just showing up. I didn’t actually say anything. It wasn’t me having to use my voice for advocacy, but it said a thousand words. Sometimes, the most powerful thing that you can do is just show up, especially in spaces where there hasn’t really been someone before you, and let that do the talking in itself.”
Differences are beautiful, differences are special, differences are more interesting. Fashion is so close-minded the majority of the time, so [Paris Fashion Week] felt like a real moment to make history.
She has paradoxically cultivated belonging within that inherently exclusionary landscape. “Fashion is something that I have always loved. For me, when my appearance changed, what I wore or putting on makeup or dyeing my hair – these were all ways that I could regain control and regain power in my appearance. I’ve always loved fashion and thought it was magical, but I never truly felt embraced by the industry that I loved and that I found magical. Nothing changes if nothing changes. And so if you can’t disrupt, if you can’t show up, if you don’t see differences, which are real and a part of society, then everyone’s mindset just remains the same.”
Small individual actions can coalesce into a wave of momentum. “If we don’t begin to try and make a change and revolt against these really negative, damaging boundaries and stereotypes and moulds of perfection that have been put in place, then things are going to continue going downhill, especially when it comes to judging people based on appearance,” Nikki points out. “Whether it’s with my videos I make online or my advocacy or showing up at fashion week, if I can start a domino effect knocking down the first domino, then that’s all I could hope for.”
As a content creator who considers herself a big sister to her younger audience, Nikki is concerned about the onslaught of information that kids are bombarded with. The next generation is at risk of being swallowed by the omnipresence of their digital footprint. Youth is now a perpetual performance. “For any teen on social media, I think the concern about being perceived and about your appearance is so high that young people don’t actually get the space to grow and make mistakes and try things and mess up and just live. It’s a shame. I think it doesn’t give them room to grow as people.”
For any teen on social media, I think the concern about being perceived and about your appearance is so high that young people don’t actually get the space to grow and make mistakes and try things and mess up and just live. It’s a shame. I think it doesn’t give them room to grow as people.
Unending pressure for the quick dopamine of engagement is changing our very concept of joy. “Kids don’t have hobbies anymore. When I was young, there was so much room to just play, and if you were bad at something, it didn’t matter. You just did it for enjoyment. These days, people only do things for hobbies if they are good at them or if they get that external validation that they are doing well and it’s good and it’s liked and it’s valuable. And I feel like that then trickles down to you as a person. Social media becomes your only validation, and your sense of self and your fulfilment becomes external instead of doing things for yourself for fun.”
Online platforms can be a lifeline of community and connection, especially for those who are isolated by disability and chronic illness. Simultaneously, it has propagated a harmful myth that we all have to be accessible around the clock. “People used to socialise by carrier pigeon or send a letter that someone wouldn’t get for another two weeks. Contrary to my job and how I may seem, I’m a real introvert. I love my alone time. The way I recharge is by being alone, by doing things that are quiet and calm. Humans were not meant to constantly have access to one another. We were not wired for that. We were not built for that. We are not machines, we are humans. If you miss out on something you see online or stay in the moment instead of posting, the world will keep spinning.”
Contrary to my job and how I may seem, I’m a real introvert. I love my alone time. The way I recharge is by being alone, by doing things that are quiet and calm.
Skirt: PAULINE DUJANCOURT, Jacket: SAMANTA VIRGINIO,
T-shirt: COACH, Boots: BIMBA Y LOLA
More than ever, we need respite from doomscrolling and the turmoil of our feeds. And what if that carrier pigeon of relief came in the form of a delightful introspective from Nikki? Enter her forthcoming podcast, Live A Little. Our lived experiences may be vastly different, but our craving for understanding and emotional intimacy is universal. “I want it to be a corner of social media that is escapism, that is not fearmongering, where you can truly just feel seen,” she reveals. “I feel like seeing is the biggest thing that we have that connects us as humans. It will be a mix of both deeper topics that you may not feel like you have someone to talk about them with, and lighter, funny stories. I really want it to be like you’re on FaceTime with a close friend.”
I feel like seeing is the biggest thing that we have that connects us as humans. [The podcast] will be a mix of both deeper topics that you may not feel like you have someone to talk about them with, and lighter, funny stories. I really want it to be like you’re on FaceTime with a close friend.
The podcast is a refreshingly humble, granular take on what many would consider an otherwise extraordinary existence. “The title came from how I’ve lived a lot of life from a surface level. I’ve done a runway show. I’ve won awards. I’ve spoken to the United Nations. I’ve accomplished all of these things at such a young age, but I’ve lived a very little normal life with being chronically ill. I will be exploring the middle area of the things that I’ve done, but also what I’ve not been able to do. It’s very new, and I’m sure it will take me in different directions based on what comes up, but ultimately it will be a place that people can come to and feel safe and feel seen and feel heard away from the normal social media chaos.”
We all have common ground, even when our obstacles seem worlds apart. “I really think it’s important to normalise differences in the sense that it is very difficult,” Nikki admits. “We have to contend with completely different issues. For us, each mountain is 10 times as big and as challenging as it is for the average person. Even something as mundane as dating can be made infinitely more complicated by difference. We need to raise awareness. The biggest thing we have as humans is compassion and trying to put ourselves in other people’s shoes.”
Egalitarianism is not a fanciful luxury – it’s an essential truth. “People with disabilities and differences must be humanised. We are just as human as everyone else, and that’s what we want in life is to feel that and be embraced by society and by our other fellow humans in that way. Nothing is off limits in my podcast. I’m reclaiming my sense of self, as I do in a lot of my work. Anyone can relate to my story, even if they don’t have any differences.”
The impact of empathy and authenticity leaves a shining finish on the gem of life. “I want to leave people thinking about the things that I talk about. My hope is to start a conversation and provoke thought or make people feel less alone in a time where we feel so connected, but also feel so unconnected.” By sharing her journey, Nikki remains a luminary for those who travel unconventional paths.
Episodes of Live a Little are available on all podcast platforms, with video episodes released on YouTube and Spotify, every Thursday.
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