Artists who refuse to let dis­abil­i­ties stand in their way would rather be ap­pre­ci­ated on their mer­its than out of com­pas­sion, writes Miriam Cosic

The Weekend Australian - Review - - Feature -

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

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