Growing up, I rarely saw disability represented in the media, And when it was, it often was portrayed as a source of inspiration or something to pity — not the lead in a rom-com or the hero of a bestselling book. I was born with a shorter left leg. So, I wondered how much these portrayals influenced some people to view disabilities as unfortunate.
While there have been improvements, accurate representation is one of the issues disabled people still face. And as someone with a lot of able-bodied privilege, I don’t face the daily barriers that many do.
Carly Neis is a 30-year-old actor and playwright in Edmonton. She was born with cerebral palsy and uses a wheelchair. Growing up, she never saw anyone like her-self represented on television or Edmonton stages. She knew that pursuing a career in acting would be, in her words, “an uphill battle.” Her motto has been to “fight the inaccessibility of art with art.”
She is currently working on Tune to A, a play she is co-writing with Cynthia Jimenez-Hicks and Cameron Kneteman. It’s based on Neis’s experiences as a teenager, and she feels it’s important for kids to be exposed to disability at a young age.
While she has performed in a number of Edmonton productions, including Wedding Bells & Bombshells and, most recently, Part of This World at the Citadel’s Horizon Lab, she is still waiting for the day when the “chair is no object.”
Neis says: “I would love for me to walk into a room, at like Citadel level and be casted as ‘girl’s best friend.’ I know appearance does play a role, in some sense, but, if I fit the bill of the character, it shouldn’t matter whether I sit or stand.”
She says theatre companies have been talking more about diversity and inclusion. But she admits she is still waiting for “someone to take that extra step in continuity.”
What does this mean?
“I often describe it in the sense of, is it actually effort or is it like, ‘Yeah, we did a disability-centred show, we’re done and we never have to do that again,’ when in reality people are waiting to see themselves on stage, film or TV or whatever medium,” she says.
There are also a limited number of accessible stages that Neis can perform on in Edmonton. While cost may be one of the biggest deterrents stopping theatres from becoming fully accessible, she tells me “If people really value that aspect of diversity, there are grants out there that will help them.”
Neis points to places like Vancouver, where there has been a physically disabled mayor, Sam Sullivan, and to Ontario, which has its own disability act. As she says, “You can 100 per cent tell that [disability] is valued [there].”
In 2012, Top 40 Under 40 alumna Bean Gill was paralyzed from the waist down by a virus that attacked her spinal cord. In 2017, she co-founded ReYu Paralysis Recovery Centre, a non-profit organization in Edmonton that specializes in aiding the recovery of neurological disorders.
One of Gill’s hopes is for ReYu to be a place where people with disabilities can connect.
“I just had so many dark days by myself and I vowed that I wouldn’t let anybody have another dark day by themselves,” she says.
Both Gill and Neis feel that attitudinal barriers are some of the biggest challenges. Gill recalls an incident when an Edmonton gym owner was surprised to see her at his facility.
“He told me that he fought with the city as to why he had to have accessible things in his gym, when he is never going to have people with disabilities in his gym. He said, ‘Now I know maybe people with disabilities can do CrossFit,’” she says. “Pre-pandemic, when I would go out to restaurants, bars or movies, never have I seen people with disabilities. Never someone who looks like me.”
Accessibility is particularly challenging in a winter city like Edmonton. Wheelchair users can’t move freely if sidewalks are not shoveled or if curb cuts are blocked by snow. Gill feels our city should be a leader in snow removal. It’s been nine years since she was paralyzed and, in that time, she says has seen little improvement on this front.
Amanda Leduc, a Canadian author and disability advocate who has cerebral palsy, explores this in her book, Disfigured: On Fairy Tales, Disability, and Making Space. She shows how many stories we have grown up with perpetuate negative attitudes about disabled people. A hunchback unfit for love, an evil witch walking with a limp, a mermaid only able to achieve true happiness once she is granted an able body.
She tells me how many fairy tales have “set up this binary that disabled people are people we should be afraid of, or they are people we should pity. Because they either get their happy ending or die alone and destitute,” she explains. “It always seems like a thing where people say, ‘Real life doesn’t really work like that,’ and, no, real life doesn’t really work like that. But the stories that we keep telling — think about the Marvel movies or Disney, the modern fairy-tale iterations we have — still very much follow this framework.”
In Disfigured, Leduc explains how even when disability isn’t represented as evil, it’s sometimes changed through magic or mutation. She writes, “Daredevil loses his sight but develops supersonic hearing as a response of his bereavement; Charles Xavier of The X-Men loses the ability to walk but grows more powerful in the realm of the physic mind.”
Leduc and I discussed how we both have a lot of able-bodied privilege and, at times, internalized ableism in our own lives.
“To deal with that was to pretend for a long time I was not disabled. That I could do everything everyone else could do, didn’t need any special accommodations,
I didn’t want to draw attention to myself, and I didn’t want to give anyone an opportunity to doubt me. So, I was like, I’m going to work twice as hard as I can and burn myself out because I want you to know that I’m OK, I’m just the same as everyone else.” Leduc explains that ableism is so woven into our society and language that “it’s going to take a long time to dismantle.”
In an effort to change the narrative, the City of Edmonton has developed the Accessibility for People with Disabilities Policy, which will be in effect from 2021 to 2024. This internal policy will look at barriers and challenges that disabled people face within City of Edmonton spaces. The first three-year action plan will be released later in 2021, and run till 2024, at which time it will be reassessed.
So, what can all of us do moving forward? Leduc says listening to disability advocates is important. “I think, especially in our social media-focused world that we have right now, there is a lot of emphasis on talking, not as much on listening. I think the listening part of it is really key,” she says. “Listening with a full heart, listening with intent of change, if that is what is required, and intent to learn.”
Neis knows firsthand the power of allyship. She says that she was almost unable to perform at the Fringe Festival a couple years ago. “Basically, one of the venues was like, ‘We can’t have chairs on stage.’ But luckily enough I had a whole entire cast willing to sit out and be my ally,” she says. “Allyship is purely to share the load.”
The hope? For disability to become far more normalized. For people to redefine what they think makes a worthwhile life. And that while disability is part of our lives, it does not define everything about us. “Disabled literally means unable to do something — not everything,” says Neis.
This article appears in the October 2021 issue of Edify
