"When I’m not in school, I act, cook, swim, shop and help people," says 15-year-old Lily Moore. She’s the youngest model to be photographed for London’s Radical Beauty Project – a collaborative collective featuring only models with Down's syndrome.
Lily has just been asked what it means to be a young woman living with Down’s syndrome today and she answers: "It can be tough. I’ve had lots of operations and I never really know when my next one will be. I get left out a lot and we’re underrepresented. People look at us and think 'Oh, there's a Down's syndrome person' instead of seeing us as regular people. For example, a model on a commercial, a character in a period drama, or a lead role in a movie. But I’m ready to be the first Down’s syndrome actor to win an Oscar. I really want to represent my community."
Just halfway through her teens, it’s a fearless ambition that is well on its way to becoming a reality. Last year, Lily featured in two TV shows, one commercial and music videos for Dolly Parton and Sia. Her defiance is magnified when she speaks about the judgment she faces from those outside of her community. "People don’t realise we want the same things they do," explains Lily. "They seem to forget that we grow up and become beautiful men and women. Instead, they think we are 'cute' and 'sweet' forever. Teenage girls with Down's syndrome apply makeup and we like picking out stylish clothes too, you know. We do all of this. The media doesn’t show that side of us." That's where the Radical Beauty Project comes in.
Founder Daniel Vais was tired of people's misconceptions of the Down’s syndrome community, and he realised many photographers around him were, too. Having worked with several of the actors, dancers and performers who make the UK’s Down’s syndrome community so unique, Daniel decided to dedicate his work to them. His ongoing project is a stunning visual series with an accompanying book. Together, Daniel and the models work to subvert the notion that people with Down’s syndrome are always "angelic", "happy" or "passive". He explains: "We don’t do cute. We do competent. We do unafraid. We do strong." In his work, people with Down’s syndrome take control of their narrative through a series of powerful, multifaceted looks.
While Lily has encountered more stereotyping than most of us, her sense of self and resilience remains steadfast: "People think I’m happy all the time. Well, I’m not. I have feelings. I get mad at my mum. I feel sad when I’m left out. I get excited when I see a cute boy and loads of other feelings too. People also think I should give hugs to everyone. That’s just weird! I don’t want to hug strangers."
Actor Tommy Jessop also features in the Radical Beauty Project. He believes the beauty industry could and should do more: "We are not represented enough, or at all, by the beauty industry. This needs to change," he tells R29. "More diverse representation would give people with Down’s syndrome more opportunities in life. You would be showing us that our lives are valued. Today, the word 'beauty' seems to mean two things: losing weight and having early nights. In the future, I reckon people should be braver. Beauty should include lots of different people of all abilities with smiling faces."
The project has come to stand for many things: inclusion, truth, representation. But above all else, it encourages solidarity and urges as much of anyone who comes into contact with it, or with its models. "I’ve worked with the Down’s syndrome community for many years. I know their qualities, they have so many. We need them more than we think," continues Daniel. "They bring something fresh to art, culture and life. All we need to do is expose them."
This call for exposure and representation comes at a crucial time for the community. With prenatal screening tests becoming more advanced, less invasive and subsequently more common, the number of babies born with Down’s syndrome is set to decrease. This feels closer to inevitability than expectation; in countries like Denmark and Iceland, which have almost universal screening, close to 100% of foetuses with Down’s syndrome are terminated. Tommy worries that prenatal screening incites a fear that isn’t necessarily grounded in fact. "I hate that new parents are not encouraged to learn or understand anything about our lives. What they are not told is that people with Down’s syndrome have good lives and live them to the full. I’ve had great roles on TV and film, my life is good. I think life with Down’s syndrome is like life for everyone else. I live mine to the full."
For Sarah Gordy – the first woman with Down’s syndrome to receive an MBE – movements like the Radical Beauty Project are about more than activism. They are a necessary form of historical documentation and preservation. "The images in this archive must be saved for history," she emphasises. "We are different from the 'norm' but we are also individuals. Every year, fewer and fewer babies are born with Down’s syndrome, which is okay because I respect and understand the decision of every mother. However, in the future, when we are gone, these images will be precious. History is important."
While the Radical Beauty Project hopes to raise awareness of some of the community’s most pressing issues, Daniel is determined to celebrate its people and their incomparable spirit. "Society really needs them, especially right now when the world is like this," says Daniel. "People with Down’s syndrome add grace. They are incredibly emotionally intelligent and we absolutely need them." By filling a gap in the beauty industry – and questioning why that gap exists in the first place – the Radical Beauty Project advocates inclusion in its broadest sense. Sarah reminds us why this should not be a difficult ask: "We’re all different, but if people are friendly, honest and straightforward, that makes it better for everybody. We have different strengths and weaknesses. We take longer to learn stuff, but we can really master our 'thing'. I keep meeting unforgettable people with Down’s syndrome and unforgettable is good, I think."
Tommy echoes this sentiment, and suggests two actions for anyone who really wants to support the Down’s syndrome community: "Don’t close doors to opportunities just because we have Down’s syndrome, open them. Don’t speak too fast. Make sure what you’re saying is clear and wait for an answer. It’s probably best not to jump in while people are giving their answers."