The view from the chair

YVETTE Cenerini handles her power wheelchair with the aplomb of a Formula One driver. She’s got the speed control set on rabbit (the other option is the sluggish tortoise) as she manoeuvres through her house, down the street and into a Handi-Transit van.

She makes it look easy -- or as easy as it can be when you're a quadriplegic with very limited use of your hands, no ability to toilet yourself and a constant set of obstacles to performing the most basic tasks. Getting out of bed and ready for the day takes three hours and an aide.

But Cenerini, 34, will not be defined by her disability.

She is a mother to two-year-old Adriel, wife of a man she first met in high school, an artist, a teacher and a bilingual woman who has earned two university degrees. When you look at Yvette Cenerini you don't see the wheelchair. You see potential being used to its fullest.

"People are always acting amazed," she says. "'Oh, Yvette graduated from high school!' Everyone graduates. 'Oh, Yvette went to university!' Lots of people go to university. 'Oh, Yvette got married! She had a baby!' These are things everyone does."

But everyone has not been a wheelchair since they were 15, the result of diving headfirst into a pool. Everyone has not had to design a life around a disability.

"I don't feel that I have too many obstacles," she says. "I have a really good support network. We're just living day by day doing the best we can."

Talk to half a dozen people active in disability issues and you'll get half a dozen answers as to how accessible Winnipeg is and how much more needs to be done. The basic framework has been laid: cut curbs to roll a wheelchair up and down, an increase in the number of ramps at public buildings, more doors that open with the press of a button and a building code that requires retrofitted buildings to be made accessible if more than 50 per cent of the original building is being renovated.

Under most circumstances the provincial government will not lease buildings unless they are accessible.

Winnipeg has a number of transit buses with drop down floors to allow wheelchairs to roll on. Huge steps have been made. Activists say it's not enough.

"Movement is slow compared to expectations," says Jim Derksen, a policy advisor to the Council of Canadians with Disabilities. "It's a complex area."

Derksen says Winnipeg's infrastructure, especially the number of old buildings in our downtown and Exchange districts, are a barrier to accessibility. So is our weather.

"You might put a ramp up. But how do the snow clearers get around it? We've got special needs that way."

Part of the problem, he says, is that demand for disability aids is growing. Motorized scooters didn't exist 20 years ago. Now they're popular, especially with seniors, and some ramps aren't wide enough for their use. Our population is aging, leading to an increased demand for services such as Handi-Transit.

Derksen is a proponent of universal design, a system designed to "accommodate the diversity of all humanity. Everyone is taken into account."

"This is a kind of ideal where we get an infrastructure that is accessible to all."

He has battled to make buildings accessible. His local drugstore was impassable. He got them to put in a small ramp. A favorite restaurant was accessible only through a back door and a trip through the kitchen. When the restaurant added a patio, he ensured a wheelchair could enter through the patio doors.

"There's no easy cheap remedy," he says. "How do you construct a sidewalk around a ramp? There will always be issues."

Harry Wolbert, co-chair of the Manitoba League of Persons with Disabilities, says it's difficult to say where Winnipeg ranks of the accessibility scale.

"There's a lot of room for improvement," he says. "We're not the worst. We're not the best either."

But there are places that are supposed to be fully accessible that simply aren't. Take the overpass between the Misericordia hospital and its parkade, for example. It's wide enough and the doors open with the press of a button. But the incline is so steep the average person couldn't wheel herself up in a manual chair. Pushing an adult up would be a feat of strength.

"Even when efforts are made to be accessible, it doesn't always work," says Wolbert.

John Wyndels, a policy analyst with the provincial Disabilities Issues Office, points to Ontario, which has a goal of making the province barrier-free by 2025, as leaders in this area. They are now conducting a five-year review of their program.

Wyndels, who has been a paraplegic since a car accident 28 years ago, says his life is now much easier than it was when he had his accident.

"We're an old city filled with old buildings," he says. "But my accessibility issues are surprisingly small. Mine I consider manageable. It's more of an inconvenience than anything."

Public perception has an impact on how accessibility is viewed. Wyndels said there was a sea change after Canadian Rick Hansen wheeled his way through 34 countries 25 years ago. He travelled 40,000 kilometres and raised $26 million for spinal cord injury research.

"That really may have been when a lot of individuals realized a person with a disability can also do a lot of things people didn't know they were capable of."

MLA Jennifer Howard, the minister responsible for persons with disabilities, says the government is watching Ontario's model closely.

"We do need to come up with a more systematic approach in Manitoba," she says. There are no immediate plans for new legislation.

Back at Cenerini's house, a representative of the Canadian Paraplegic Association has strapped me into a power chair that's a match to hers. Cloth tubes cover my hands to mimic her lack of hand dexterity. They're bound in tape so I'm not tempted to take them off. In addition to a seat belt, I wear a chest strap. Cenerini can't lean forward or she'll slide out of her chair.

The idea is to give an able-bodied person a sense of what a person with a disability experiences on a daily basis.

I figured it would be relatively simple because I was in a wheelchair two years ago, recovering from a broken pelvis. I had a manual chair and grimly survived the difficulties of curb cuts that were too high to manoeuvre, cracked and heaved sidewalks that couldn't be navigated and buildings I couldn't gain access to. Had my injury been permanent, we would have had to move from our two-storey house.

Yvette and Alain Cenerini custom-built their home. The hallways are wide, the living space without obstacles (other than their little boy's toy cars). Everything, from the bathroom sink to the kitchen counter is accessible. The basement, which contains her painting studio, is reached by a tiny elevator. The front door deadbolt has been lowered to be within her reach.

I'm given a few basic tips and left with Cenerini, Adriel and an aide. If I wanted to do anything it has to be something she can also accomplish. The only exception is using the bathroom. Even then I have to get the aide to unstrap me from the chair. The covered hands are a problem. When we eat lunch I can't cut my food.

"You have to learn to ask for help," she says.

We head outside through a patio door. There's a gently winding ramp to the fenced-in play area. I get wedged in the patio door, ending up somehow nearly sideways in the opening. A power chair is impossible to lift, especially with a person inside. The aide somehow wiggles me out.

We're in the yard when I realize I'd like to put my jacket on. I can't. The chest strap keeps me from leaning forward. Cenerini somehow shrugs hers over her head, tugging at the zipper with her teeth. She's like a contortionist.

When we leave her house I bang hard against the doorway. The bruise lasts for days.

There is an incredible vulnerability to the experience. When we unload ourselves at an office building downtown, half the people walking by don't seem to see us. The others have pity in their eyes.

"You focus on what you can do," says Cenerini. "You accept that everything's going to take three times as long."

The effects of a disability can be, as John Wyndels says, little more than an inconvenience. They can also be as devastating as not being able to live in your own home following an accident.

What every member of the disability community agrees on is this: Things have improved in this city but they still have a long way to go.

lindor.reynolds@freepress.mb.ca

Republished from the Winnipeg Free Press print edition May 22, 2010 H1