York alumna Julie Devaney can find humour in the direst of situations, like the time she waited six hours in a hospital emergency room in terrible pain before a doctor finally examined her and then promptly sent her home. She returned a week later, still in pain and barely able to walk.
"If only I read the getting-admitted handbook," said Devaney, 28, who graduated from York in 2001 with a BA in political science and again in 2007 with an MA in critical disability studies. Devaney is the writer and actor of the performance piece, My Leaky Body, which was also the basis of her MA thesis.
"I really like it when I can get the audience laughing at some of the darkest scenes. It’s a really powerful experience for me," she said.
My Leaky Body is based on Devaney’s experiences of being diagnosed with ulcerative colitis and her four-year ordeal of navigating a medical system that likes tidy numbers and precise symptoms – unlike her illness. Her story is one of mind-numbing pain, disbelieving doctors and a faulty medical system.
Right: Julie Devaney
Devaney was in and out of the emergency department 15-20 times, where she would wait for hours. She didn’t look sick enough to be there. She didn’t always have a high fever. She wasn’t an infant and she wasn’t vomiting – all the things that get someone looked at faster. What she had couldn’t be quantified. In the end, she underwent three rounds of surgery.
"Chronic illness doesn’t fit well in the emergency department structure. The specialist would tell me I had to go to the ER, and the ER would say, ‘What are you doing here?’. I went through every single medication and every single medication stopped working and I kept going to the ER. With ulcerative colitis, it’s difficult to identify the symptoms. Auto-immunity is all very complex and doesn’t fall into neat little boxes, probably nothing does, but especially not auto-immunity," said Devaney.
Her illness changed the course of her life. Devaney switched from doing her MA in women’s studies at the University of British Columbia (UBC) – sometime after her first symptoms began – to York’s critical disability studies.
"I went to several walk in clinics in Vancouver, but they all said, ‘Oh, you’re just stressed out. There’s nothing wrong with you’," said Devaney. "I became really ill and had to move back to Toronto and in with my family. That’s when I decided to change what I was doing."
It wasn’t until she saw her family doctor in Toronto that she was properly diagnosed, and as a way of finding her own voice in the medical mayhem, Devaney began to write about her experiences.
"The medical system was quite disempowering, so it was good to be writing about what was happening to me and about why the medical system needed to change," she said. "Some really rich stuff came out of it and it was pretty charged at times."
Devaney began performing My Leaky Body at conferences in 2006 out of frustration, because writing about it academically was too abstract. She was in bed five days a week, but she was supposed to be writing and talking about disability and the politics of health policy.
As she says in her show, "Performance is a last resort because suddenly, I just can’t do it any other way…. All I want to do is sit on the table in my hospital gown and read the things I wrote while I lay on those stretchers and in those beds."
The first time she performed was at York in May 2006 for the Canadian Disability Studies Association conference, part of the Congress of the Canadian Federation for the Humanities and Social Sciences. She then went on to do performances in Washington and the UK. This fall, she performed across Canada at conferences and in theatres.
"It was really important for me to be performing that writing in public and really impressing on people and demonstrating to them what was happening," Devaney said. "I think it was especially the performance part of it that helped me."
During her performances, Devaney walks out, changes into a hospital gown, gets on her stretcher and begins to read snippets of her story from a medical chart. Not the typical lecture given at a conference.
Below: A scene from a March 2007 performance of My Leaky Body
"It is definitely outside of the box for a general academic environment, but it is always a hugely positive experience. People feel really moved. They learn some things they wouldn’t normally in that kind of an academic setting," Devaney said. "And a lot of people feel their own experiences are being validated. They feel as if they are being heard as well. I found that really surprising at first. I knew there would be general themes, but people with really different experiences could also identify with my experience."
My Leaky Body is also performed at theatres across the country. Reliving a painful experience time after time, however, can be difficult.
"Sometimes performing is cathartic and sometimes I have to remind myself consciously that I’m not really going back into those places. It’s a dangerous line and sometimes it’s really hard work," said Devaney. "I do have a lot of fun with it though."
She cites a lack of funding as the main reason health care has deteriorated, but Devaney thinks patients aren’t the only ones who are unhappy; medical professionals are upset with the system as well. Devaney would like to see a collaborative approach between medical practitioners and patients that would translate into more effective care and less trauma for the patient.
Left: Julie Devaney, photo by Kathryn Palmateer
"It would really be a more productive encounter if doctors could see it as a collaborative experience with patients, rather then seeing them as bodies that need to be managed. It’s not about bad doctors, but I do think there are things systematically wrong in the way doctors are trained," she said. "We could actually create something better for everyone involved and I think storytelling is a way to really make that clear. It brings people to that realization in a much more powerful way."
Devaney is much better, although some symptoms do reoccur. She doesn’t, however, let that stop her from performing or from continuing to do freelance research in her area of study.
"When I was ill, it was like a downward spiral, now it is like an upward spiral," she said. "Every year, I’m healthier than the last."
For more information about Devaney, upcoming performances or to book Devaney, check out her My Leaky Body Web site.
By Sandra McLean, York communications officer.