by Tom Murray / photographs by Marc Chalifoux and William Eastly
Let’s start with the wheelchair. It’s a motorized affair – a Quickie P200, 180 pounds of bad-ass steel and plastic, modified to the owner’s specs. Joystick on the left, backpack behind the seat, Sean Devine sits slightly hunched forward, head lolling to one side. He wears a checked button-up shirt and jeans, and he looks at me with an inscrutable glance that says, “I’m sizing you up far quicker than you expected.” His small hands rest on his lap, fluttering at times to make a point. He weighs 60 pounds.
It’s a cold late-November afternoon and Devine is wheeling through the hallways of his southwest Edmonton house while Rutger, his friend and caregiver, brews coffee. A white bungalow with a terraced garden and wheelchair ramp out front and hardwood floors inside, Devine purchased the house six years ago. His mother and a few friends painted: forest green in the office, yellow faux finish in the living room. The kitchen gently slopes down to the living room, where a 61-inch television sits in the corner. The washroom has been retrofitted; there’s space for a walker in the shower.
Photographs from Rutger’s travels and paintings by local artists adorn the walls. A large montage of Devine’s friends hangs over the computer in his office along with pictures of indie bands such as The Swiftys and Devilsplender. There’s an Oilers jersey – he occasionally attends games – draped across a side desk. CDs are stacked next to computer programming books; piles of National Geographic magazines are shoved high on a bookshelf, there’s Star Wars memorabilia everywhere.
“We both love this stuff,” Rutger says unabashedly, picking up a Millennium Falcon model. "By the way, my real name can’t be in this article. The place where I work wouldn’t take kindly to me being associated with a pornographer.”
Pornographer. Devine looks slightly nettled by the term. Even when joking about it, he doesn’t consider himself a porn king.
Devine was born in 1977 with a mysterious disease that was finally diagnosed at age 11 as a rare form of muscular dystrophy. At birth his joints were so contracted that he was stuck in the fetal position; nurses had to pry him apart by yanking on his arms and legs. Doctors at the hospital in Jasper where he was delivered bundled him off in an ambulance to Edmonton for specialized treatment. “They said he wouldn’t live past a year, maybe two,” his mother Deedi recalls, “and that he’d never walk.”
Devine’s parents refused to give up, and his first few years passed in a blur of reconstructive surgeries until he took his first faltering steps at the age of four. As he grew older, the prognosis kept changing. When he beat the odds he was given new ones; if he made it past nine, he’d be blind and in a wheelchair. “Horror stories,” Deedi sighs. “Emotionally I couldn’t deal with it, so I treated him like a normal kid. It was precarious. He had to concentrate on every step to stay up, but he was mobile.”
Devine attended kindergarten in Jasper with the other children, who were cautioned to watch out while playing with him. A gentle push could result in a fractured skull. Curbs and stairs were challenging, and whenever he fell, he was down until somebody helped. But Devine kept moving – to Calgary, to Edmonton with his mom after his parents separated, to Canmore to live with his dad, Steve. Devine liked the then-small mountain town, but his father, a ski guide, was killed in an avalanche. “Strangely, I had an eerie feeling that it was going to happen,” says Devine. “His death was one of those moments that shifted my perspective.”
He ended up back in Edmonton, where his mom chased jobs as a restaurant server. He made friends through drama and art in junior high and high school. But the muscular dystrophy took its toll. Devine developed scoliosis, a curvature of the spine, and needed back surgery. So in 1995, in Grade 12, he dropped out of school. “I had the feeling of a knife going straight up my ass every time I attempted to sit down,” he says matter-of-factly. “It took some time before I was able to sit in my wheelchair for any length of time, and I was really bored at home.”
At the same time, after so many years of working for other people, Deedi started her own restaurant: De Vine’s. With her son at home recovering from surgery, she traded in her extra car – she’d purchased a van to accommodate his wheelchair – and bought a computer. It was a 486-66 PC, and, according to Deedi, one of the best purchases she’s ever made.
This wasn’t the first computer Sean Devine owned. He started playing video games on an Apple IIE when he was eight. But it was the first time he paid any real attention to programming. Games like Doom and Duke Nukem 3D were fine, but he was itching to get into the real action: the internet.
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