In the middle of last winter’s lockdown, while still adjusting to the news of their newborn son’s Down’s syndrome diagnosis, Matt and Charlotte Court spotted a casting ad from BBC Drama. It called for a baby to star in a Call the Midwife episode depicting the surprising yet joyful arrival of a child with Down’s syndrome in 60s London, when institutionalisation remained horribly common. The resulting shoot would prove a deeply cathartic experience for the young family. “Before that point, I had shut off certain doors for baby Nate in my mind through a lack of knowledge,” Matt remembers. “To then have that opportunity opened my eyes. If he can act one day, which is bloody difficult, then he’s got a fighting chance. He was reborn for us on that TV programme.”
It’s a fitting metaphor for the larger shift in Down’s syndrome visibility over the past few years. While Call the Midwife has featured a number of disability-focused plotlines in its nearly decade-long run – actor Daniel Laurie, who has Down’s syndrome, is a series regular – the history of the condition’s representation on screen is one largely defined by absence.
A watershed moment came in 2019 with the premiere of The Peanut Butter Falcon, starring newcomer Zack Gottsagen, who has Down’s syndrome, opposite Shia LaBeouf and Dakota Johnson. After meeting film-maker friends Michael Schwartz and Tyler Nilson at Zeno Mountain Farm, a theatre camp for disabled and non-disabled adults in Vermont, Gottsagen asked them to write a feature-length drama in which he could star, given the total absence of leads with Down’s syndrome in Hollywood. It proved a herculean (and financially draining) task to get the resulting movie into cinemas, with several streaming services claiming that Gottsagen was not a “marketable” face. “Mike and Tyler put their lives on the line,” Gottsagen’s mother, Shelley, shares affectionately from her Florida home. “They were both homeless in the process [of making the film].”
The Peanut Butter Falcon’s legacy can be felt in the growing numbers of characters with Down’s syndrome appearing on screen. Dakota Johnson is looking to create a TV show for Gottsagen through her production company TeaTime, while Netflix has partnered with the BBC on a five-year programme to get more talent with disabilities in front of and behind the camera. Then there’s Brad Ingelsby’s Emmy-sweeping Mare of Easttown for HBO, which cast teenager Kassie Mundhenk as Moira Ross, the daughter of detective Mare’s best friend.
“Children with Down’s syndrome were always part of my life growing up,” Ingelsby reflects over the phone from Los Angeles. “If you’re creating a ‘portrait’ of a community, it just makes sense to have someone with Down’s syndrome as part of the ecosystem.”
Kate Winslet, who starred as Mare, goes one step further .“We were proud that our storyline included a young person who may not typically be cast because of their different abilities,” she tells me. “I don’t like the word ‘disability’ – I never have. To me, Kassie is differently able, and she was as capable as any other member of the cast or crew in coping with being part of an intense team on a buzzing set. She took it in her stride like any other professional would.”
Writers are asking leads with Down’s syndrome to tackle difficult plotlines – including ones focused on their marginalisation – rather than shying away from awkward topics. Take the last season of Line of Duty, which saw Tommy Jessop’s character Terry Boyle mistreated by police over the course of a brutal investigation. Far from struggling to handle the material, according to the show’s creator, Jed Mercurio, Jessop “empowered us all to give him greater responsibilities”. Co-star Vicky McClure adds that he remained “a true professional” throughout even their most “challenging scenes”. Jessop’s mother, Jane, who has always championed her son’s talents and founded Winchester’s Blue Apple theatre for those with disabilities, seconds the hard-to-watch plot’s necessity: “It highlighted things that needed highlighting.” She says that actors with Down’s syndrome “don’t have to accept everything” if a part is triggering for any reason.
It is a revolution that Los Angeles-based agent Gail Williamson has worked for decades to precipitate as head of KMR Talent Agency’s dedicated diversity division – a rarity in Hollywood. As the mother of a son with Down’s syndrome, Williamson witnessed the dramatic impact representation can have after the historic casting in the 90s sitcom Life Goes On of actor Chris Burke, who has Down’s syndrome. In the late 80s, she remembers going to dinner “with my son on my hip, and just silencing the restaurant”. With the introduction of Burke’s character, Corky, on one of America’s most-watched TV channels, waiters began speaking to her little boy directly.
Among Williamson’s most high-profile clients are Glee’s Lauren Potter and American Horror Story’s Jamie Brewer. (Tellingly, both series are Ryan Murphy projects; Williamson credits the producer’s interactions with her young son during a bit part on Nip/Tuck with opening Murphy’s eyes to the possibility of hiring talent with Down’s syndrome.) The numbers alone speak volumes. When Williamson joined KMR in 2013, she had about 25 clients with disabilities who made approximately $50,000 (£37,000) in a year. Today, she looks after more than 700 individuals, with KMR’s disabled clients collectively bringing in $3m in 2019.
The world of theatre is a different story. While organisations such as Blue Apple theatre and Zeno Mountain Farm have been staging elaborate productions starring performers with disabilities for years, the mainstream industry has been slower to embrace the Down’s syndrome community. Jamie Brewer became the first actor with Down’s syndrome to play a lead in a Broadway or off-Broadway production in 2018, when she starred in Amy and the Orphans, which depicts three siblings reunited at their father’s wake. Playwright Lindsey Ferrentino’s telling note to directors when she submitted the work? “Finding a talented actor with Down’s syndrome isn’t difficult. So please do it.” Netflix is adapting the work into a film, with Ferrentino set to direct.
“There’s less of a safety net for performers in theatre due to a lack of funding, and you need those mechanisms in place,” says Ben Weatherill, an alumnus of the Royal Court Young Writers Programme, who in 2018 wrote the acclaimed romcom Jellyfish. Its staging – starring Sarah Gordy – at the Bush theatre and the National Theatre proved a learning experience (and another first for an actor with Down’s syndrome), with Weatherill making each performance as accessible as possible: commissioning sign language interpreters; producing simplified guides to the material; and maintaining quiet spaces for anyone who felt overwhelmed. “Most of the people who came through the National’s doors for Jellyfish had never been there before,” Weatherill enthuses. “It’s the clearest argument for representation I’ve ever seen.”
Meanwhile, choreographer Daniel Vais has taken a build-it-and-they-will-come approach since founding his inclusive performing arts studio, Culture Device, in London in 2010: he staged The Rite – an interpretation of Stravinsky’s The Rite of Spring – at the Royal Opera House, and toured the world with Drag Syndrome, with troupes of dancers and drag kings and queens with Down’s syndrome. “Everyone assumes that what we’re doing is like an after-school club,” he says, “These are artists. My choreography is surreal and abstract, and I realised that talent with Down’s syndrome could simply perform it better than anyone else.”
His next project, Radical Beauty, is a series of high-fashion photographs of individuals with Down’s syndrome taken around the world, which will be released as a coffee-table book and major touring exhibition in 2022. His simple words of counsel when his artists face marginalisation? “Listen, this is avant garde – and the world is a bit slow.” It seems it may be catching up at last.
New faces: meet the game changers
Zack Gottsagen, actor
‘You can do anything you have in your mind, and I always have something in mine’
At the 2020 Academy Awards, Zack Gottsagen became the first actor with Down’s syndrome to present an Oscar, eliciting a roaring standing ovation the moment he appeared on stage in a crystal-studded bow tie and tuxedo. “I met all the famous people around,” he says, his face lighting up at the memory. “Adam Driver, Jamie Foxx, Brad Pitt.” It’s a lesser-known talent who inspired his career, though. “I got into acting because of Corky,” he says, referring to a character from the 90s American sitcom, Life Goes On, played by Chris Burke, who has Down’s syndrome. “I saw him as a five-year-old, and I still remember it. He made me realise that I could do it.”
He quickly committed to training at school and at home. (His parents would give him three VHS copies of Grease every year for his birthday, knowing he would wear them out within a few months while practising his Danny Zuko impression in their living room in Florida.) Yet, as an adult, Gottsagen felt disheartened about the lack of Hollywood parts for actors with Down’s syndrome, so he challenged his friends at Zeno Mountain Farm, an acting camp in Vermont, to write and direct a movie in which he could star – despite their total lack of experience, Hollywood connections, or financing.
Through Gottsagen’s sheer force of will (not to mention cooperation from Shia LaBeouf and Dakota Johnson), The Peanut Butter Falcon finally hit cinemas in 2019, and became one of the highest-grossing indie films of the year.
“You can do anything you have in your mind, and I always have something in mine,” says Gottsagen, who plays a young man who escapes from a care home to follow his dream of wrestling. Not only did the 36-year-old improvise many of his lines, he also did every one of his own stunts, from plunging off a 21ft dock into a river, to being wrenched backwards off his feet after shooting a gun. Up next? A turn as a drag queen in the comedy God Save the Queens, starring Drag Race’s Michelle Visage.
Madeline Stuart, model
‘The fashion show runway is my happy place, where I truly feel alive’
Few fashion careers begin quite as auspiciously as Madeline Stuart’s did. After making her first appearance at New York fashion week in 2015, the Australian model found herself one of the most tweeted-about people in the world that day. “I felt amazing,” enthuses Stuart, who studied with a coach from Juilliard before her debut. “Preparing was a little stressful, and there was a moment when I needed a quiet space to try to relax, but now I don’t need to prepare. The runway is my happy place, where I truly feel alive.”
Her journey to the catwalk began a few years earlier, when the now 25-year-old lost a lot of weight for health reasons. (For certain people with Down’s syndrome, a slower metabolism can contribute to heart problems, which Stuart has struggled with since childhood.) When her mother uploaded a self-styled before-and-after photo on Facebook in celebration of her progress, it quickly racked up 7m views, earning her a devoted following and requests to model for global brands in the process. “Social media has shown us that people want to hear people’s stories,” she says now. “It is not enough just to be pretty; you need to be authentic and caring for people to embrace you.”
Today, Stuart has walked for more than 100 designers, everywhere from Paris to Dubai, occasionally pausing to high five the “frow”. But she has had to fight to be treated, and compensated, as any other model would be. “About 15% of the world’s population has some sort of disability,” she says. “I don’t think we should just talk about people with Down’s syndrome. All of those people deserve to be included and represented.”
George Webster, presenter
‘It’s really important for children to see me on the TV – I never had anybody like me on the telly growing up’
Perched in front of a vast CD collection at home in Leeds, George Webster is every bit as cheerful and animated as his CBeebies persona. “I loved CBeebies when I was really young,” the 21-year-old explains, beaming. “My inspiration, my hero, was Mr Tumble, because if I spoke, I used Makaton [a language programme incorporating speech, signs and symbols], and he helped me to learn it.”
These days Webster is, as he gleefully puts it, “really, really, really busy”. After making his debut in the channel’s rainbow-coloured, polka-dotted house as a guest presenter in September, he quickly got promoted to a regular slot after lighting up social media. The five-minute clip, which sees Webster making a fruit smoothie and hosting a kitchen disco, has racked up nearly 100,000 views, with everyone from Strictly Come Dancing champion Oti Mabuse to Doctor Who’s Jodie Whittaker messaging him their congratulations.
“I had to do a screen test, and then a month later I got a phone call saying I had the job,” he says. “I was squealing with excitement. My first day on set I worked with Dodge the dog, who is hilarious. I’m loving making connections with a young audience, and hearing from parents of children with Down’s syndrome. It’s really important for children to see me on the TV, and for me to be a positive role model. I never had anybody like me on the telly growing up. More people with Down’s syndrome and other learning disabilities need to be given spaces on programmes to help everyone understand what Down’s syndrome really is. Everyone in the world is talented in their own way, and nobody deserves to be judged.”
Fittingly, a TV special with Mr Tumble is in the works. And when George is off CBeebies duty? You can find him “going t’ pub” with friends; whipping up his speciality, a tuna pasta bake; or watching a favourite film from his extensive library.
Kassie Mundhenk, actor
‘My favourite TV series will always be Mare of Easttown’
Like more than 3 million other people around the world, Kassie Mundhenk sat enthralled by the finale of Mare of Easttown when it dropped this summer – attracting such record-breaking viewing figures that HBO Max proceeded to crash just as Kate Winslet’s Detective Sheehan apprehended the series’ murder culprit.
“I’m still kind of upset,” the 19-year-old says of the twist ending. “How could it be him? How could he do it?” She has more reason to be invested than most: the Pennsylvania teenager beat more than 50 girls for the part of Moira Ross, the daughter of Sheehan’s best friend, Lori (Julianne Nicholson), in the Emmy-winning hit.
The Philadelphia set proved an excellent training ground for Mundhenk, who settled on becoming an actor as a little girl, with Winslet popping into her trailer to check in during filming. She’s currently in the middle of rewatching Mare of Easttown and analysing everyone’s performances. “I like the acting from Detective Zabel in episode five,” she says, a note of the Hollywood critic in her voice.
While Mundhenk, like many of the cast, never learned the killer’s identity on set, she had bigger concerns than trying to decipher red herrings. Moira’s experience of bullying is central to her storyline, and Mundhenk felt determined to represent that element of the Down’s syndrome experience properly on camera. “I was embarrassed,” she admits of a scene in which Moira is tormented in the school cafeteria, but pushed through with filming regardless, “because it happens”.
Her next goal? A Disney contract – although, she stresses: “My favourite TV series will always be Mare of Easttown.” In fact, she’s as keen for another season as the rest of the world, frequently checking in with showrunner Brad Ingelsby about any progress on fresh material. “He doesn’t have anything yet!” she says exasperatedly, with a little of Moira’s winning sassiness, before a determined look comes over her face. “Well, I’ll help him.”
Ellie Goldstein, model
‘Do I like being the centre of attention? Oh my God, yes!’
“Who’s ready to let the dogs out?” Ellie Goldstein quips to the photography team assembled for her Guardian shoot, before breaking into an infectious cackle. The 19-year-old may have started modelling only three years ago after signing with Zebedee Management, but she’s in her element in front of the camera – instinctively striking poses and making asides that have the crew in fits of laughter. (Her thoughts on her makeup? “Cake it on.”) Although she’s in hot demand with major fashion brands these days, she’s perhaps best known for her viral Gucci campaign, where she became the first model with Down’s syndrome to star in an advertorial for a luxury fashion house.
“It was faaabulous,” she says in her Essex twang after the shoot wraps up, explaining that she decided to go into modelling after spending hours poring over a coffee-table book about the lives of old Hollywood stars. “I felt proud and excited about the Gucci campaign. To make the world more inclusive, you need more people with disabilities – and more people like me – as models.”
At the moment, she’s busy working on a “top-secret” project with Adidas, and has just released her first Victoria’s Secret campaign, while her ultimate dream is to be on the cover of Vogue.
And though she loves being the centre of attention – “Oh my God, yes!” – she finds her newfound status as a role model a bit odd, particularly when it comes to interacting with her thousands of Instagram followers.
“To be honest, it’s really weird. I didn’t expect that. To everyone, I would just say, ‘Be yourself. Never give up. You can do it. And I hope your dreams come true, whoever you are.’” As for her favourite social media comment from a fan thus far? She pauses, turning serious for a moment, before breaking into a grin. “Your eyebrows are on ‘fleek’.”
Tommy Jessop, actor
‘This series of Line of Duty was a bit like being on a James Bond set’
“Never judge a book by its cover,” Tommy Jessop counsels while sitting for his Guardian portrait in an east London studio. In the 16 years since he helped his mother, Jane, launch Winchester’s Blue Apple theatre company for people with learning disabilities, Jessop has collected a garland of firsts within the Down’s syndrome community, including becoming a voting member of Bafta and playing Hamlet in a major touring production. “It’s one of the highlights of my career,” he says of the latter. “I learned how to sword fight, and how to ‘punch’ someone. Brilliant.”
The 36-year-old is best known for his nail-biting performance as Terry Boyle in Line of Duty, most recently in series six, broadcast this spring. “It was a bit like being on a James Bond set,” he says, his deliberate enunciation betraying his years of Shakespeare training. “I enjoyed doing the infamous interrogation scenes. I do like to make an audience laugh and cry, shout and swear.”
His verdict on the episode in which his character is nearly drowned in a lake? “Like being in a freezer in the Arctic.” He’s keeping details about a rumoured next season under his hat (“hashtag no spoilers”) but admits his favourite moments from the shoot included trading football stats with Vicky McClure – he’s a devoted Newcastle United fan.
Now, Jessop’s talent has caught the attention of Hollywood, with Steven Spielberg casting him in his forthcoming second world war series, Masters of the Air, for AppleTV+. “I’m optimistic about the future, because people are talking about us now rather than hiding us away,” Jessop adds. “We’re people first, with different skills and interests. Don’t let the label get in the way.”
