ARTISTIC STATEMENT

Last year, while brainstorming play ideas, my friend Julia said jokingly, “You should write a play about me.” I had initially shut her down, but soon realized we had a story worth telling. Julia and I are similar. We share a love of the arts – competitive dance and musical theatre respectively – and both live with chronic health conditions. Art has become our way of navigating health challenges, and a medium to share our experiences. I began to wonder: Why aren't there any stories told from the patient perspective? And why are patients always victims of their own bodies? 

Mainstream media antagonizes health conditions, framing them as battles to be won. Patient experiences are reduced to drama, doctors are glorified, and the person within the condition is ignored. ‘Exstrophy’ explores the more nuanced and uncomfortable story of living with a hidden disability and the stigma around bodily functions. It challenges the bias that presents differences as burdensome and limiting. 

The writing process required a delicate balance of medical accuracy, authenticity, and entertainment. Dialogue constantly swings between dense medical jargon and unrealistic representation. Only by collaborating across lived experiences – disabled and able-bodied – did our writing team realize this vision. Inspired by Julia, the juxtaposition of athletic dance performed through a ‘broken’ body became the heart of ‘Exstrophy’. Our story embraces coexisting with medical challenges, rather than defeating them. While we all have our limitations, we can choose how to live alongside them – and learn to thrive.

-By Chloe Fleisher (Grade 12)