DisabilityX: “people telling stories to illuminate their lives so we can see the commonality in all of us”

Left to Right: Paul Vienneau and Will MacPherson Brewer (town crier). Doug Rafuse and Kelly Leblanc in background. Photo: Jennifer Henderson

Part performance and part town hall meeting, “DisabilityX” attracted more than a hundred paying customers at The Bus Stop Theatre last week. If the laughter and applause that greeted the half-dozen performers is any indication, this first sold out event will not be the last. And it will need to find a larger, wheelchair accessible venue for the show in 2020.

“DisabilityX is people telling stories to illuminate their lives so we can see the commonality in all of us,” said Paul Vienneau, the Master of Ceremonies who presided over the evening from his wheelchair at centre stage. A crew filmed the event as part of a documentary about his successful crusade for a legislated Bill of Rights to improve accessibility to government services.

But while Vienneau has been a tireless advocate pushing both HRM and the Province to make transportation and housing more accessible for growing numbers of deaf and disabled people, the evening was more celebration than soapbox.

“We all know someone with a disability,” said town crier Will MacPherson Brewer who opened the evening with an enthusiastic announcement. Will was born with Down Syndrome. “It isn’t an abstract thing. It affects us all.”

Vienneau then introduced a friend whom he joked plays wheelchair basketball even worse than he does. (Tip: Don’t play this game unless you are very fit and aggressive). Eric Payne may or may not be much of a basketball player, but he could have a future in stand-up comedy. Payne has a prosthetic leg as a result of a motorcycle accident when he was 39. The former Navy man drew some knowing chuckles with his anecdote about working for Veterans Affairs in Charlottetown.  Co-workers repeatedly wanted to know “what they should call him.” An amputee? A disabled person? “Call me Eric,”he said. “Just call me Eric. That’s my name.”

Payne says he does not feel disabled and he resists being labeled. “I call you guys bi-peds,” he quipped. “Sometimes I see that look. People are looking at you and they are wondering what happened to you. Then they imagine what it would be like if it happened to them, and they are scared shitless!”

Adam Pelley is a writer and in his past life, a pro wrestler known in the ring as “Rockapelley.” In a dramatic spoken word performance, Pelley talked about moments of glory as a high school athlete, feelings of inadequacy at being cut from the team, and drifting into drug abuse followed by treatment for mental illness at the Abbie Lane hospital. “I wrestle with schizophrenia as I wrestle with the City: you can call schizophrenia my tag team partner,” Pelley read from his work.

One of the purposes of Disability X was to act as a “show and tell” for how to make events inclusive. A silent, short film about The Halifax Explosion was produced by people in the deaf community to help hearing people understand their world. As each storyteller came forward, an American Sign Language interpreter appeared beside them. A computer-assisted program projected their words in bold typeface on a screen behind the stage. The Facebook group is DisX Halifax.

Bedford native Robert Hessian suffered a life-altering brain injury in his late teens while playing hockey in California. His family was told he would not come out of the coma. But Robert did survive. He told the audience the next 10 years “was a long hard road back to something that resembled normal.”

Hessian spent time at the Nova Scotia Rehabilitation Centre. He had to learn to walk and talk again and that experience led him to attend university and tour facilities all over the world to learn how he could help others. Today he is the full-time caregiver and personal trainer for Doug Rafuse and Kelly Leblanc, adults with brain injuries who appeared onstage beside him.

Hessian has spent his last 25 years living and working with Doug Rafuse in the house Rafuse owns outside Windsor. Doug suffered a brain injury in a car accident that left him relying on a wheelchair and in a nursing home for decades. The 64-year old Rafuse uses a computer to communicate. Robert read aloud part of a letter Doug had written for the event:

“Robert and I work on my recovery every day. I have lost almost 100 pounds and with his help, I now walk everywhere. In 2000, I graduated high school with my equivalency. It isn’t easy but it has been worth it.”

Eighteen months ago, Kelly Leblanc also checked herself out of the nursing home where she had been living. (Hessian does not believe brain-injured people are likely to recover in long term care facilities). Like Doug, Kelly has made remarkable physical progress. The middle-aged woman has also lost more than 100 pounds. Her goal is to walk, and under Hessian’s intensive daily regime, she is now able to stand and navigate her way to the bathroom.

“We need to find a better way to support people with physical and cognitive disabilities,” Hessian told the crowd to warm applause. “Doug and Kelly are testaments to what is possible with hard work and proper support.”

Eric Payne is blazing a trail at the Nova Scotia Community College where he is currently enrolled in radio/television journalism. There is nobody quite like him…a point which emerged frequently throughout the evening.

A young woman in her 30s named Megan asked if anyone had any “tips” for dealing with the shame that accompanies feeling different or “broken.”

“We are all ‘broken,’” replied April Hubbard, one of the DisabilityX organizers. “I see broken as a badge of honour. It leads to things I would never have expected. We need to see and embrace it as an opportunity.”

Brave words. Even braver words by author Arundhati Roy ended a presentation by Alex Kronstein, an advocate for people with autism. Kronstein quoted Roy saying: “There’s really no such thing as ‘the voiceless.’ There are only the deliberately silenced, or the preferably unheard.”

For those who prefer to be heard, Disability X is helping to pump up the volume.