© Lucy Beall, photographed by Guen Fiore for Vogue Italia
We talked to Lucy Beall about all things modelling, activism, and living with a disability.
Epidermolysis Bullosa (EB) is a group of rare skin diseases that cause blistering and is typically present from infancy. There is currently no cure for any of the four main types of EB and, depending on the severity, life expectancy can be as little as 30 years. Lucy Beall has the most severe subtype - recessive dystrophic subtype (RDEB), causing her body to be covered in painful blisters.
From being told at the age of 17 that she looked like she had been “mauled by a gorilla” to walking at London Fashion Week and featuring in Vogue Italia, Lucy’s journey with disability and activism has come a long way. INJECTION were honoured to talk to her about her myriad experiences, starting, of course, with what it’s like to be in Vogue - twice!
“That started in December 2019. It was with an Italian women-owned brand based out of Milan called Fantabody. They were doing a campaign called “I Am The Woman I Am” to showcase not just disabled women, but all kinds of women, sharing their stories and how their brand is representative of all of them. I got to model for them and it was amazing!
That came out in February 2020. From there, I got to shoot with Vogue Italia during lockdown in July. It was really stressful because they sent me thousands of pounds worth of designer clothes and I had to mail them back! It was a great experience and I really loved the female designers and energy behind it.”
While this is by no means the only modelling Lucy has done (she also worked on projects for Behind the Scars and numerous independent photographers), she says the opportunity to work with Vogue was one of the most poignant in her career so far.
“When I was born and my mum had my diagnosis, you couldn’t Google it and find anything positive at all. Now, the fact that parents with a child born with EB can Google it and see something happy and hopeful, and that their child can live a life worth living, is a huge deal to me."
That’s exactly what the point of my activism is: not just to spread awareness, but to spread hope for people who have it.
It is clear that for Lucy, modelling is more than just a little girl’s dream come true: she recognises her unique position as a role model. Though it seems juxtaposing to write the words “privilege” and “disabled” in the same sentence, Lucy understands that occupying a platform allows her to show others - both disabled and able-bodied - what they too can achieve.
“Even when I was younger, I knew that I was in a fortunate position to be able to do so much despite having EB. This was very rare - a lot of the time this condition can be so overwhelming for people that they don’t have the luxury to decide what they can do every day. I always knew that because I was in this position, I had to do something to be as helpful as humanly possible without being patronising.
What I want people with disabilities, especially younger people, to take away from it is that even though your body might be limited, your mind is not. I realised when I was younger that I never felt limited, even when I couldn’t do things my friends could. I think it’s important to realise this young.
Now that I’m older, and I was never supposed to be this old, parents of teenagers value the opinion of someone who has been through it. It gives them some hope!”
© Lucy Beall, photographed by Guen Fiore for Vogue Italia
It’s more than being a role model though. Yes, we have all seen more disabled and diverse models in magazines and on social media in recent years, but why are we stopping here? Lucy is vocal about how much further we could be pushing this, rather than congratulating brands for the bare minimum.
“Instagram is great, but we [disabled people] need to be in decision making roles in magazines and media. We need to be interviewed by people who don’t sensationalise us.
My biggest takeaway from the industry is to hire disabled models, producers, designers and whoever else. Not because they need tokenism but because we have value in our work!”
In order to support those with EB and raise awareness so this can become the new reality, Lucy makes a directed push towards funding. Every time she attends an event (that she may even be keynote speaker at), she makes the Instagram post a fundraiser. This also acts as a consistent reminder of her message: though her work is fun, the real motivation is to make progress.
“I think it’s really important for me to remember why I am doing what I do. All of the perks related to this level of activism are very fun and cool (getting to meet Tom Holland was awesome) but what’s the point if it’s just performative? I always try and make sure I’m doing it for a reason, and this reason is super clear. Any post I do that is with a big brand or when I go to an event, it will be a fundraising post.
What’s the point if it’s just performative? I always try and make sure I’m doing it for a reason, and this reason is super clear.
Vogue definitely upped the ante, it was a huge turning point in what I do. The audience I was reaching grew so much: people who would never have heard about EB and would never look at Snapchat and Instagram-focused outlets now knew about it. And they didn’t just know about it in English, but also in Italian!
People see me and think “there’s nothing wrong with you, why are you complaining.” But there are so many disabilities that aren’t visible so I think it’s important to talk about it all! Not only that, but to see people contribute and take more time to find out about research or, even more amazingly, donate to research funds, they can see how they will be helping people with EB make their lives much easier. I think it’s important to cover all aspects of it - the glamorous side and the not-so glamorous side.”
Unfortunately, with increased exposure, comes increased backlash. For someone with a visible disability, Lucy is vocal about her critique of uninformed stereotypes. On more than one occasion she has called out the ignorance she faces on both a personal and professional level, from people asking questions that would be considered abhorrent in any other context, to brands being downright discriminatory.
© Lucy Beall, photographed by Ula Rostamova
“[A lady asked me] if I’m able to have sex - it just blows your mind! You wouldn’t go up to someone else with a different kind of disability and ask that. I think people feel emboldened by the anonymity of the internet because we aren’t speaking face to face.
Because I’m very public about what my body looks like, people think they deserve to know more about it. It calls into question the consumption of disabled bodies and how we treat them. I can’t fault people for being curious but I can absolutely fault them for asking stupid questions!
It calls into question the consumption of disabled bodies and how we treat them.
I also had a bad experience with a large brand recently. I was invited to their London store opening and they asked if it would be okay to post videos of me on social media. I said of course - I didn’t ask them to take videos of me, they asked me - and I did everything they told me to.
They removed themselves from my Instagram tag first, then posted my videos on their story and didn’t tag me. They tagged every other girl at the event, the only difference with me is that I’m visibly disabled. I called them out and asked them to tag me like they did every other model - it’s not that hard! It’s systemic with this stuff. Hopefully the more we talk about it, the more we improve.
Yet, despite her inspirational work as a model, she considered this simply a “tool in my activism tool belt.” Instead, she calls herself an academic above all.
“Definitely before I’d say I am a model or activist, I would say I’m an academic first. I’m studying mediaeval art history and archaeology. It’s really cool, I am loving it! I graduate from my masters in July. I think from here I’m definitely going to get a PhD, but first I might take the year off or maybe do an MPhil.”
Thinking about her future goals, Lucy said “more education and more activism!”
“With my modelling, my absolute dream goal would be to speak with British Vogue. I think that would open up the quality of activism that I do! Personal goals-wise, I am publishing a book and want to get my PhD!”
When talking to Lucy it is clear that she works hard not to be defined by her disability. Instead, she uses it to define what those with disabilities can achieve by working constantly to defy society’s expectations of female beauty and to challenge perceptions of disability.
Whether you’re inspired by her modelling, activism or dedication to education, Lucy has gone far beyond what was ever expected following her diagnosis. She hopes her work will encourage others to realise they can do the same!
To learn more about EB and to donate to research funds you can check out the charities DEBRA and EB Research Partnership!