THE ABILITY TO STAND OUT
Artists who refuse to let disabilities stand in their way would rather be appreciated on their merits than out of compassion, writes Miriam Cosic
When Jana Castillo was 25, she caught a virus. It wasn’t just any old sniffles-and-cough virus. It felled her. Castillo was a professional dancer, the fulfilment of a childhood dream. After her illness, which affected her neurological pathways, she was left with dystonia, a movement disorder that causes her to spasm: a combination of physical tics, the uncontrollable speech of Tourette’s, and occasional breaks in brain-to-limb connection that can extend from five minutes to 12 hours.
She had to learn to walk and talk again, to feed herself. She lived with her twin sister in Melbourne while she put her life back together. “Many times she was my rock,” Castillo says. “I would walk 50m from home and fall over. And she would come from work, pick me up, feed me, leave me curled up in bed so I could rest, and then she’d go back to work ... ”
Sheer persistence, and an indomitable spirit, brought Castillo back to the barre. She works full-time and tours with Australian Dance Theatre now. “Most mornings, I wake up with some kind of slow dystonia symptoms,” she says. “And then through massage and things like yoga and having salt baths, I realign my system. And then I go and do class with everyone, and then we go into rehearsals.
“Often by the time I’ve turned up to class, I’ve done an hour and a half on my own, piecing my body back together.”
Castillo hid her condition from everyone but her colleagues. “I didn’t want the pity clap,” she says. She has disabled colleagues who have told her they don’t know whether people are clapping because of the calibre of their work or because of their “bravery”.
She was outed last August, however, when she took part in Off the Record, directed by Force Majeure’s Danielle Micich and a veteran of disability in the arts, Dance Integrated Australia’s Philip Channells. Castillo’s performance was mesmerising. Watching it without having read the program notes, I took a while to realise her more out-there movements — slight but intriguing — were not choreographed, but were intrinsic to her body. When ovations came, I know I clapped for her superb technique and warmth of communication, but it was tinged with some awe too.
Off the Record was the second production in a Carriageworks project called New Normal, devised to showcase disability in the arts in 10 productions across three years. The first program, Simple Infinity, directed by Urban Theatre Projects’ Rosie Dennis, premiered last July. Next up, in September, is a collaboration between Studio A, which supports visual artists with disabilities, and Erth Visual & Physical Inc called Bird Fox Monster, billed as a “series of experiences, performances, sculpture works and installations framed around a three-course meal carefully designed to connect all five senses”.
Carriageworks received $100,000 for the project, out of the $475,000 allocated by the NSW government in 2015 for support programs that “promote social inclusion through the arts and disability sector”. Disability services minister John Ajaka announced the allocation. And therein lies one of the conundrums of this burgeoning artistic field: is it about equity and access, about therapy and education, or about art for art’s sake?
There was nothing “make-work” about Off the Record. And no one who saw Back to Back Theatre’s Ganesh Versus the Third Reich would question the artistic importance of the company’s work, despite it having been set up by and for disabled actors. On the other hand there is a plethora of organisations, in various states of government funding, that operate across a spectrum from art as therapy, through giving disabled artists structural support to pursue professional or semi-professional careers, to purely advocacy work.
Gabrielle Mordy is artistic director and cofounder of Studio A, an organisation that supports disabled visual artists. Her focus is art as art. “I’m trained as an artist, I have no training in disabilities,” she says. “When I first saw these artists I was completely struck by the strength and the quality of the art they were making, and by the dedication with which they made that art, and by the lack of support and opportunity they had to develop their skill — to connect with other like-minded artists, to get their work out there in galleries. That’s the kind of support that Studio A provides.”
In her report for a 2014 Churchill Fellowship, during which she studied support for artists with disabilities in various countries, she spoke with Intoart director Ella Ritchie in London, who runs a Supported Studios program with prestigious art institutions such as the V&A and the Tate. “Ritchie had a hint of frustration and/ or disappointment in her tone as explained how their relationship is consistently with the institution’s education department,” she wrote. “I could sense her itching for serious attention from the curatorial team.”
She learned that some curators in public museums considered it “an insult” to show works by “those kinds of people” alongside mainstream contemporary artists. She discovered a less hostile, but still exclusionary, response. Anna Murray, assistant curator in public programs and access at the Tate, told her she thought the galleries were scared.
“But rather than scared of people with intellectual disability, she felt they were scared of exhibiting their art incorrectly, of ‘getting it wrong’,” Mordy wrote
“From her perspective, she felt the gallery sector was keen to engage ... but that there was confusion around the protocols and best-practice models for exhibiting such work. And hence, curators may avoid the work.”
It is a symptom of a society-wide awkwardness with difference. A 2014 survey found twothirds of the British public felt uncomfortable talking to a disabled person. Scholarly studies in Australia have found similar attitudes, but also mention an obvious caveat: that the more familiar people are with people with disabilities, the less awkward they are around them. Which is, of course, where the arts come in: the arts, from paintings to novels, have long functioned to instruct in the way others interact with the world. And from that, broader understanding and empathy ensues.
Further confusing the art-versus-access issue is the philosophical divide that exists between “disability in the arts” and “disability arts”: that is, between arts that are about disability and art made by disabled people. It is one thing to watch Dustin Hoffman in Rain Man, quite another to watch Marlee Matlin at work as a political adviser in The West Wing. Mark Deans of Back to Back Theatre has Down’s syndrome, though you quickly forget it watching him perform. His colleague Scott Price has autism.
Most people outside the theatre world are intrigued by how actors can learn the lines for an hours-long play. But actors with intellectual disabilities? “Most people with autism have good memory retention,” Price says with a verbal shrug, though he finds it difficult to keep track
Dancer Jana Castillo was left with a movement disorder after catching a virus at age 25