written by Laura Guzzo
Carlo DeMarco wants you to know that his way is better
Carlo DeMarco was born with epilepsy and lost most of his eyesight at age 12 after a massive seizure. Losing his eyesight made him envious of people who could see—but it also made him realize that people’s ability to see is also what can often cloud their vision.
“When you’re seeing, you’re not listening,” he says. After losing his sight, he had to find ways to adapt to his new disability, which was when he began focusing on the power of listen- ing, and noticing that most of us aren’t doing it very well. “I often ask people ‘would you rather be looked at or listened to?’ So why are you putting more emphasis on your appearance than in what you have to say?” he wonders. “It’s more fun my way. If I’m talking to someone, I get to imagine them being 300 different people.”
DeMarco is a fixture in and around Montreal’s Italian community for his dancing— he can often be seen at community events doing a trance-like shuffle that he displayed for the Panoram team at a recent photoshoot. No matter what is going on around him, as soon as the music starts, it’s like it takes over some part deep within him.
And that was just during “Jessie’s Girl” by Rick Springfield. Throughout our photoshoot, he fired off song requests from Michael Jackson to Whitney Houston and Grease to Flashdance, and didn’t slow down for a minute. Now 56, he learned to dance as a child by having people describe dance steps to him and mimicking them with a Barbie doll.
“It’s not as hard as people think,” he says. “This is what I want to show people who judge us and think that we can’t do it. They’re wrong.” Music and dancing play pivotal roles in his life. Music is an outlet for his imagination—he internalizes song lyrics and often places himself at the centre of his own mini-movie. He cites MC Hammer’s seminal hit “U Can’t Touch This” as an example. “I imagine people trying to touch my guide dog and me telling them ‘you can’t touch’,” he quips. (He also actually doesn’t use a guide dog—instead, he carries a walking stick and device that guides him by pointing out things like red lights.)
Dancing became a lifeline during a dark period after a car accident over 30 years ago. Weighing 380 pounds and confined to a wheelchair, he made the decision to lose weight. He started by walking and eventually graduated to dancing. “I did it all on my own and I didn’t spend a penny,” he says. “People think they need to buy tapes and take diet pills and I’m here to prove that you don’t need to do any of those things.” “If people see me dancing and they laugh, that’s fine,” he says. “I know why I’m doing it—for my health. I even dance with the kitchen sink sometimes!” He urges people not to pity those with disabilities but rather, to encourage them to realize their potential. He says his family always supported him and an influential social worker at Dawson College in Montreal helped him realize a dream he never thought he could achieve—earning a degree in Theology from Concordia University.
He chose Theology because of his deep religious faith—a faith that he uses to give solace to people during tough times. He often visits the sick in hospitals to offer words of comfort and regularly offers his services to the community. “I don’t agree with using a disability as an excuse,” he says. “I see it as a challenge. You don’t know what you’re capable of unless you try.” But, he says, support and representation are pivotal, both for the able-bodied community to understand the reality of the disabled and for the disabled to see themselves in society. “I would love to do a movie with disabled people,” he says. He wrote a screen- play based on his life that he dreams of having turned into a movie. The story is based on a relationship he was in with a deaf woman. “Feeling her sign words onto my hands, while she read my lips as I talked—it’s more romantic than seeing,” he says. His story is one of resilience, of the power of believing in yourself, and of taking your hardships in stride. “If I could see, I would be so confused,” he says. “Looking at what other people have makes you jealous. It’s better to stay in your own territory and fix what you can fix.”
Photo by Liana Carbone
Assistant Marco Leclerc
HAVEN Creative Studio