CULTURE/RIGHTS
Emma-June Curik was initially very guarded about sharing her disability but has since turned her story into a cabaret performance. In a one-woman show, the 36-year-old incorporates pop music and theatre classics in sharing her narcolepsy, which makes her feel constantly fatigued and sleepy.
“Imagine that you haven’t slept for 48 hours, and that’s the baseline that I’m generally operating on day-to-day,” Curik says.
The Gold Coast artist has been performing since she was five but swapped the stage for behind-the-scenes work due to her disability. “As I continued to work through my reality as a disabled person, I decided I had another story to tell,” she says. “The show is about the parallels between my journey to diagnosis with narcolepsy and my dating and romantic life.”
Curik made her return to performing at the disability-led event, Undercover Artist Festival (UAF) in Brisbane in September. It featured 13 other artists from around the country — musicians, dancers, comedians, actors, and poets, all of whom have a disability.
Festival director Madeleine Little, who’s also disabled, says there were few ‘on the ground’ opportunities for artists with a disability. “We certainly don’t have anywhere near as many as our non-disabled counterparts. Sometimes we have to make our own opportunities, create shows based on our own lives and find brilliant stages to put them on,” she notes.
Folk musician Aspy Jones, who also performed at the festival, uses his music to share his experience living with autism. “I genuinely do love writing in a different perspective. Thirty years ago, it probably wouldn’t have been such a hot topic to talk about having a disability in the music industry,” he says. The 25-year-old, who grew up in Gympie, Queensland, says events such as the UAF were “refreshing” and showcased entirely new views on life.
Little says the festival was an opportunity for the broader arts industry to see what performers with a disability could do, as well, to show how the industry could improve things for audience members with a disability. “It is a lot easier than you think to make art accessible for artists and audiences. You just have to be prepared to think about things differently.”
Jones says sometimes when artists say they’re an “artist with a disability”, event organisers view them as “hard to work with”. “They want the opportunity just as much as other artists,” he notes.
Another festival, the inaugural Sweet Relief festival, also held in Brisbane in September was designed to be inclusive for everyone. Queensland Music Trails chief operating officer, Daryl Raven, says it was the right thing to do and a smart business play. “There’s a large audience of people who have accessibility needs and they’re also wanting to experience events like this,” he adds.
Sweet Relief had Auslan interpreters, a front-and-centre viewing platform and a tactile sensory silent disco for neurodiverse or audio-sensitive people. Festival goers could also get support from roaming social workers, counsellors, nurses, and mental health peers.
Spinal Life Australia senior access advisor, Dane Cross, helped provide awareness training and guidance on the site’s design to the festival’s organisers. “These ideas have come from a greater understanding of who might want to come and visit a great festival,” he says.
As someone who uses a wheelchair, Cross says he faces many barriers when attending festivals. “Being surrounded by all these people who are standing up around you, you just can’t see the stage,” he explains. He says other event organisers were slowly ‘catching on’ to improve accessibility.
Raven says Sweet Relief’s accessibility features would be the new standard for future events across Queensland. “We don’t want those barriers to exist for any of our audience or talent,” he says.
Singer Tony Doevendans, who has Spina Bifida, says the music scene was becoming more inclusive. “People with disabilities are just as important in arts and music as they are in every other sphere of society,” he says.
The Brisbane-born artist had his big break in a UK TV advertisement for the 2016 Rio Paralympics Games after being approached ‘out of the blue’ by a casting agent who’d seen a YouTube video of him singing. “The funny thing was, at first my wife and I thought it might be a joke,” says Doevendans, who’s known as Tony Dee. The 54-year-old says starring in the advert opened a ‘floodgate’ of opportunities. “People were approaching me to come and sing for them.”
Little says she’s excited to see the industry evolving to include people with a disability to showcase their talent. “I think we’re seeing more and more opportunities come up, but I’d still like to see a lot more,” she says. “Art should represent and reflect the society we live in.”
ABOVE Emma-June Curik in cabaret
PHOTO ABC