‘We need to come out from the shadows’: Meet Britain’s first film director with Down syndrome

A demonic baby wails into being. A terrified mother recoils in horror. A sadistic Victorian gentleman puts the monster baby into a freakshow. Someone gets hit in the face with a decomposing human heart. This is The Puppet Asylum, a potty-mouthed horror musical from the mind of Otto Baxter: it is gruesome, hilarious and absolutely wild. It’s also autobiographical, to a point.

Baxter is the dapper 35-year-old man who wrote, directed and starred in the film – he also happens to be the first British film director who has Down syndrome. It’s just the latest development in a life spent breaking barriers and subverting expectations: Baxter once performed as a character named Horrora Shebang in a drag troupe known as Drag Syndrome and he was the subject of a BBC documentary (2009’s Otto: Love, Lust and Las Vegas) about his quest to lose his virginity. He is also a working actor, with a number of film and stage credits under his belt, including a critically acclaimed turn in Waiting for Godot as well as a Bafta-nominated short.

We first meet in the cafe of a London hotel on a grizzly September morning, and Baxter isn’t feeling too good. It’s been a busy few days – the previous night he was on stage with Mark Kermode, then out to dinner afterward, and all the rich foods and sparkling drinks have left him under the weather. Though he looks increasingly grey under his devilish beard, flashes of the Baxter I have recently seen on breakfast TV shine through. He swears delightedly, and loves to be outrageous with his family and friends. At one point, he jokingly pretends to strangle his mum Lucy, who adopted him when he was four; at another, he flicks a v-sign at his close artistic collaborators Bruce Fletcher and Peter Beard. When I ask why he loves to swear, Baxter looks me in the eye and says, “F*** you!” with a hearty laugh. Fair enough. Swearing is just really f***ing fun.

The genesis of The Puppet Asylum came from his firm friendship with Beard and Fletcher, who are the two filmmakers behind the 2009 documentary about him. They served as producers on The Puppet Asylum, and direct an accompanying behind-the-scenes documentary on the film called Not a F***ing Horror Story. The relationship runs much deeper, too: the three men spent years working together to develop Baxter’s ideas, following every creative thread he dangled. And there are a lot of them.

Set in Victorian London, The Puppet Asylum revolves around the “beautiful monster” baby, Otto, who is discarded by his birth parents and then stolen by The Master, an evil man who recognises that the baby has special powers. A fictionalised Lucy Baxter kidnaps Otto and raises him in a loving home, but The Master keeps pursuing him, desperate to harness his powers for himself.

Baxter was very much in charge. “Our rule was that when Otto had an idea, it didn’t matter how crazy we thought [it] was, we would follow that idea to its final destination and see where it took us,” Beard says. It often wasn’t obvious to Beard and Fletcher what each scene was about, but hours of talking, drawing, playing (as well as group trips to the pub) slowly revealed Baxter’s innermost thoughts and feelings. Sometimes they found themselves reluctant to follow his lead – the character of The Master made no sense to them at first, until they finally came to understand that he is the personification of all the ways that Baxter’s power is taken from him in everyday life. This careful, lengthy process gave him the language to communicate it. “Sometimes you need to have a conversation about something important and it might take hours,” Beard continues. “You might have to draw pictures and do some other stuff and try to find different ways. He’s a classic bloke – doesn’t like to talk about his emotions.”

Throughout the film, Baxter’s character desperately tries to evade The Master, played by Paul Kaye. In a devastating culmination of fears, The Master stabs Lucy in front of Baxter and then locks him up in a cage. How did you tell the real Lucy that you were going to kill her off, I ask. “I didn’t!” Baxter says, grinning again. “When we wrote that scene, do you remember what you said, Otto?” Fletcher asks. Baxter nods: “I do. Pretend.” The loss of Lucy is a fear that lies at the crux of the film: what happens to Baxter when he no longer has someone around to advocate for him?

“I had no idea he was thinking about it,” Lucy says now. Making the film allowed the family and a small circle of close friends to come together and talk about it (Baxter has three adopted brothers, who also have Down syndrome). The outcome of it all is that Fletcher and Beard are now legally deputised to help Baxter make decisions about his life when Lucy is no longer around.

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Baxter’s direction with the actors on the film was also revelatory, most likely down to his own experience on stage and in front of the camera. “His instincts are brilliant,” Fletcher says. “The notes he gives between one take and the next are always really interesting.” Perhaps this is thanks to his visual mind. “I have a television screen here,” Baxter tells me over Zoom the day after our cafe chat, when he’s feeling better. He traces a rectangle on his forehead.

After the shoot, which lasted eight days, Baxter woke up feeling strange. He told Lucy that there were voices in his head. “I thought he’d become psychotic or something,” she says. Baxter called Fletcher, Beard and a few other people who had been heavily involved in making The Puppet Asylum. Gradually, it emerged that what he was hearing in his head were the ghosts of microaggressions that he’d been subject to in his life, rearing up as if trying to douse the fire of his newfound power. “He couldn’t fit the two things together,” Lucy thinks now. The empowering shoot and the belittling experiences from other areas of his life were fighting it out.

After Baxter’s worrying turn, Lucy went out and bought a notebook. We can all attest to the power of a new notebook, and this one was special. It is a “big, fat, important” book, Lucy says, and on the front, they wrote in big letters “LET IT OUT” and “ADAM F***ING WARD”. “Who’s Adam F***ing Ward?” I ask. “It’s me!” Baxter says. “From when I was born!” Adam Ward is Baxter’s birth name, the name that was taken from him when he was given up for adoption. He has not gone by it for a long time, but when he filmed The Puppet Asylum scene where he breaks out of confinement and defeats The Master, he danced around euphorically for half an hour, yelling, “I’m Adam F***ing Ward!”

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Baxter and Lucy stayed up for hours into the night writing in the big, fat, important book. They put down all the horrible experiences that were swirling around in Baxter’s head: the first was the time a care worker had admonished him for having a nip of brandy while making a Christmas cake. By the end, they’d reached over 40 incidents. “All the times when he felt not powerful at all,” she recalls. They’d been at it for hours before Lucy insisted they go to bed. Of the voices Baxter had been hearing that they had exorcised onto the page, Lucy says: “I think it was Adam Ward trying to get out.”

People with learning disabilities are used to being dismissed and ignored, or told off for doing perfectly human things. They are expected not to experience sexual urges or desire romantic connection. They are infantalised and ridiculed (82 per cent of children with a learning disability experience bullying). They are seen as an inconvenience and a burden, and society prefers they be squirrelled away in group homes and kept out of sight and out of mind. They are segregated into specialist schools and rarely enter the workforce. Just 5.1 per cent of adults with a learning disability in England were in paid work in 2021, according to figures from NHS Digital published in 2021. Figures from 2023 suggest even that tiny number has fallen. So if your entire being is seen – or not seen – by society as a burden or a joke, is it any wonder that finally having a sense of your own agency could cause all those negative experiences to fizz back up?

“Come out from the shadows,” is Baxter’s advice to other people with learning disabilities who haven’t had the chance yet. “You can do it. It’s a revolution!” And his inevitable Oscar speech somewhere down the line? There won’t be many words: just his signature bit of putting his glasses on upside down, making a rude gesture and then asking, “What time’s lunch?”

‘The Puppet Asylum’ and ‘Otto Baxter: Not a F***ing Horror Story’ are streaming on Sky Documentaries and Now