JJulia Hales didn’t know she had Down’s syndrome until she was 21. “My mum and dad sat me down and told me that I was quite special to other people,” remembers the 42-year-old actor. “I said, ‘Oh, OK.’ But I was really angry at first. I didn’t want to look like a person with Down’s syndrome. It took me a long time – but I have accepted it and I’m celebrating it now.”
All her life, her parents had “mainstreamed” their daughter, sending her to the same school as her three siblings and encouraging a fierce independence in her. She’d always thought she was just like the rest of the family, so finding out that her physical appearance was related to a condition that only she had was a shock. Her father – lovingly, gently – told her that, if she really wanted, there were plastic surgery procedures available to alter the signs of Down’s syndrome in her features: “I thought about it, but decided not to – and I just kind of got on with the rest of my life.”
Getting on with her life has involved two decades of advocating for people with disabilities, being nominated for Australian of the Year 2022 and creating a hugely acclaimed theater show, You Know We Belong Together, which comes to the Edinburgh festival this month. When it premiered in 2018 in Perth, the show sold out.
“It was huge,” Hales says, sitting in the rehearsal room of the black swan theater company in Western Australia. “I’ve been having people from the street saying, ‘I saw your show. You’re an inspiration, Julia!’”
Black Swan’s production of You Know We Belong Together begins with Hales’ love for Home and Away, the Australian soap that is Neighbours’ more beachy (and saucy) cousin. The stage is made to look like the show’s iconic diner, the Bait Shop, run by Hales’ favorite character, gruff yet warm Alf Stewart, played by Ray Meagher, who has been on the show since it first aired in 1988.
“I just love the drama and romance, the cast,” Hales says. “I never miss an episode.” In her show de ella, Hales explains her feelings de ella about never seeing an actor with Down’s syndrome on Home and Away, and her dream de ella to be the first de ella. She already has a plan for who she’d play: Clare, “a long-lost adopted granddaughter to Alf Stewart, who wanted to find her birth family de ella”.
On stage she is joined by six other performers with Down’s syndrome who share their own dreams: the dancers Lauren Marchbank and Joshua Bott, the Indigenous painter and performer Patrick Carter, actor Tina Fielding and a married couple, Melissa and Mark Junor, who met at a dancing class and recreate their wedding dance on stage.
“All of the parents of the cast say they always get asked the same question: if you could take Down’s syndrome away from your child, would you? And every single one of them says no,” says Clare Watson, who co-wrote the show with Hales and playwright Finn O’Branagáin. “They love their child for who they are and that is absolutely part of who they are.”
When Hales and Watson first met, the show was focused on the challenges of dating with disabilities. “But just as a side topic, Julia started talking about Home and Away and I saw her light up – you could see this passion,” Watson says. During development they reached out to the show’s producers and were invited to visit the set in Sydney. Hales ended up working with the producers to film a denouement for her play: a scene where Clare (portrayed by Hales) runs into Alf (Meagher), and the pair muse on the beauty of Summer Bay before heading off for a spot of fishing.
The show also explains the horrific history of how people with Down’s syndrome were institutionalized in Australia. Until the 1980s, Australian parents were encouraged to surrender children with Down’s syndrome to the state. Hales was born after these practices had mostly ended; as she observes, she had been conceived a generation later, there is a chance that she wouldn’t have been born at all. The development of screening technology means that, in Australia, 90% of pregnancies where Down’s syndrome is detected are terminated.
Hales’ late mother didn’t know her baby had Down’s syndrome until the doctor first saw Julia. “My mum was quite sad when she found out,” Hales says. “But she and my dad loved me anyway.” The show is dedicated to her mum de ella, who spent her life fighting for Hales to be given as many opportunities as her siblings de ella, encouraged her to enter tertiary education and helped her move out and live independently at 21.
Hales is thrilled to be arriving in Edinburgh but her true dream remains unfulfilled. “I’m hoping people from Home and Away will see the show and maybe say, ‘Julia, we would love to have you on our show – if you have time, come audition,’” says Hales.
“I love it – ‘If you have time’,” laughs Watson. “You’ll say, ‘I’ll have to check my schedule, I’m quite busy with international tours at the moment.’ This is the thing to know about Jules: she has a show that has had standing ovations every night, and she’s taking it to the world. For some people, that’s an unimaginable zenith. But Jules is like, ‘Yeah I am excited – but I still have my goal.’”
What is Hales most proud of? “Having all my friends out there, when we don’t get to be on screens very often. I want people in Edinburgh to understand how we were treated in the past and say, ‘OK, we can’t let that happen again.’ And I want people with disabilities to say, ‘Wow we can be just like Julia and be on screens and TV.’ Because I’ve always wanted to change the world to make it better.”
The three of us laugh together, in wonder at the force of Hales’ speech. “You see what I mean?” Watson says, smiling.
George is Digismak’s reported cum editor with 13 years of experience in Journalism