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Battler smiles through adversity

  • February 18, 2008
  • Bruce Bromley

JESS Kapuscinski-Evans is the archetypal Aussie battler.

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Jess, 19, who has been a quadriplegic since she was about 18 months old, next month begins an arts degree at the University of Melbourne and plans a career in performing arts.

She has become an inspiration and a mentor to other disabled Victorians.

Jess became a quadriplegic after suddenly developing a condition called transverse myelitis.

A swelling in her spinal cord damaged nerves in her body and she was left with no feeling below her shoulders.

Jess does not know why it occurred.

“It’s a condition that mostly happens in babies or old people. Not much is known about what triggers it or why it happens in some people,” she says.

“Initially, doctors thought I had appendicitis. I was at creche one day and had a nap.

“When I woke I couldn’t sit up. It was that sudden.”

Physical disability has not stopped Jess pursuing her dreams. She went to a mainstream primary school and high school and joined the Victorian Youth Theatre and Australian Girls Choir.

“I met one other person with a physical disability only when I was with the theatre group, not because the theatre group doesn’t want people with disabilities but because people don’t give it a try,” Jess says.

She’s performed in plays as diverse as A Midsummer Night’s Dream, Richard III and Eugene Ionesco’s The Killing Game.

“I played the Duke of Athens in A Midsummer Night’s Dream and had to wear a moustache and a beard. The director was forever teasing me about my five o’clock shadow,” Jess laughed.

“I enjoyed Richard III. I played a royal whose son had been executed by the king.

“I had a two-minute monologue where I came on stage, yelled at Richard III and then left. It was a great part.”

Jess is also a talented singer who writes and performs her own songs at pubs and venues near her Northcote home.

“I love singing because you can immerse yourself in the music and sometimes it can be an escape from a busy life,” she says.

Last year Jess finished her VCE and won a place at university.

She’s looking forward to this new phase of her life and overcoming the challenges of studying and planning her career.

She says she would one day like to direct in the theatre or in film and television.

“Failing that, I’d like to do some public service work,” she says.

“I’ve been involved with a youth disability advocacy service and I’ve worked with Darebin City Council on various projects affecting people with disabilities.

“If the creative stuff doesn’t happen I can see myself working in that field.”

Jess is also keen to help people better understand physical disability.

“Sometimes people assume I didn’t go to school because I was in a wheelchair,” she says.

“Or people think I must be suffering. Some people do have significant amounts of pain, but
I don’t have much pain at all.

“I certainly wouldn’t consider myself suffering from anything.

“I think I am lucky because I don’t know any different.

“It must be harder for people who have a car accident at 20 and who know what it’s like to walk. I think that would be a lot worse.”