Disabled leave the shadows and their mark

Posted on April 9, 2010 in Inclusion Debates

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TheStar.com – healthzone.ca/disabilities – Levelling the barriers
March 15, 200.   Helen Henderson, LIVING REPORTER

Justin Hines has had two songs on the charts from his debut album, a career poised to explode and a message to the world: Follow your passion.

He is the future of a culture emerging from the shadow, a generation of young people who transcend wheelchairs and labels. In the 25 years he has been on this planet, the pace of change has gone from eons to nanoseconds. For those who move or communicate or process information differently from the majority, progress takes many forms.

The spectrum of disability today stretches all the way from a mother accused of giving into frustration and drowning her 4-year-old autistic daughter to Ontario’s latest lieutenant-governor, a man who has brought leg braces and an electric scooter into the chambers of power.

Twenty-five years ago, another young guy named Justin had to take on his parents in court to get permission to leave the institution he had lived in since age 2. Justin Clark used a wheelchair and did not communicate verbally. When he won the right to make his own decisions and moved into a house in Ottawa with three other people at age 20, he made history.

Where is the disability community today and where is it going? Hines’ story could be the face of the future.

Justin Hines’ mother started singing to him when it looked as if he wasn’t going to make it in the first fragile years of his life.

Until he was 5, he and his mom, Carol, lived at what is now Bloorview Kids Rehab while his father and grandmother looked after his brother at their home in Unionville.

Through surgery after surgery to fuse bones that would otherwise repeatedly dislocate, “Justin never lost his smile,” his mother says. Nor did he lose the music.

At age 6, enrolled in a mainstream school, Hines started singing lessons, partly to help with persistent breathing problems, partly because he says his grandmother believed in his voice.

“I was very nurtured,” he says.

Eight years later, he won a contest to do the national anthem at a Raptors’ game. Then Wal-Mart picked his haunting song “Wish You Well” to advertise its Walk for Miracles on television and his voice captivated viewers. His first album, Sides, came out last year.

Through high school, he says, it was his music career, as much as his disability, that made him feel different. These days, with music evocative of the best of the folk era ballads, he says: “My vision is to connect with as many people as possible.”

Twenty-five years ago, a young musician in a wheelchair might have been little more than a curiosity, a performer barred from many venues by a shortage of ramps and an oversupply of closed minds. Today, Hines has toured from London to Dubai with no problem. Check it out at www.justinhines.com/downloads.php.

Of his record label, Orange, part of Universal Music Studios, he says: “They have been great: they haven’t tried to exploit the disability or hide it.”

Hines speaks to the world through the music he makes but many others with disabilities are communicating equally strong messages.

FINDING A VOICE

As more people with disabilities make their case, their message is being heard, advocates say.

“The rank and file and their families are speaking out – which is every disability advocate’s dream and every government’s nightmare,” says legal activist David Lepofsky.

“Self advocacy means the individual voice is gaining credibility and power,” adds Keith Powell, executive director of Community Living Ontario.

“We have a voice at the policy table,” says Catherine Frazee, co- director of Ryerson University’s school of disability studies. “It hasn’t yet achieved results but we have a place of belonging and respect, a recognition of citizenship.”

Public sympathy for Robert Latimer, who killed his 12-year-old daughter Tracy, who had cerebral palsy, “was a very profound wake-up call, bringing the disability community together,” says Frazee.

Still, many advances in disability rights have not translated into practical changes. A decade ago, the Supreme Court ruled that hospitals across the country should provide free sign language interpretation for anyone who is deaf.

“It was a big court breakthrough but the impact has been weak because governments have never lived up to their obligations,” says Lepofsky.

“In Europe and the U.S., they look at some of our wins in court as state of the art but in terms of actual access, we are still the pits,” says David Baker, the lawyer who acted for Justin Clark.

Baker has continued to be a central player in some of the most significant disability rights cases, including a Supreme Court decision last year ordering VIA Rail to make its passenger trains wheelchair accessible.

POVERTY’S TOLL

Adults with disabilities who cannot find jobs must exist on support payments that top out at just over $900 a month. Most get much less.

Families caring for a child with a disability too often pay dearly, advocates note.

Most rely on one income because one parent becomes the full-time caregiver. They also face extra expenses for disability-related goods and services not covered by governments.

“Living on the Ontario Disability Support Program means living below the poverty level and poverty is a huge barrier,” says Powell.

“The problems of poverty are becoming more and more entrenched,” adds Frazee.

“Support is profoundly inadequate. We need a radical rethinking of social policy.”

As Marie White, chair of the Council of Canadians with Disabilities, puts it: “Social policy is homeless in this government.”

GAINING ALLIES

Bit by bit, the message is getting out.

“Our issues have gone mainstream,” says Lepofsky. “Queen’s Park politicians have started thinking of voters with disabilities. The fact that disability issues really have to be included in policy strategy proves that.”

“There’s a sea change in acknowledging disabilities,” says Melanie Panitch, director of Ryerson’s school of disability studies. “We’re seeing activism through broad-based groups and coalitions looking at poverty.”

Globally, last year’s United Nations agreement on the rights and dignities of people with disabilities is “very significant” in adding weight to the movement,” she adds.

STILL A LONG WAY TO GO

“We’re stalled for lack of federal leadership,” says Marcia Rioux, head of York University’s school of critical disability studies, currently spending some time in Australia as a “Distinguished Fellow” at LaTrobe University in Melbourne.

Australia, by contrast, “is back on board,” she says. “During the good times, when the economy was strong, we should have got further. There’s no trickle-down for people with disabilities.”

HOW TO GET THERE

“Attitudes will change only when people are seen out in the community,” says motivational speaker Judith Snow, another leader in the move out of institutions.

“It took 12 years of fighting. “I was physically and emotionally dying in a nursing home,” says Snow, who put together a “circle of friends” to help look out for her welfare.

Today, she laments moves to place young people in nursing homes where enough community support isn’t available. As Lepofsky says: “Twenty-five years ago, we said, `The biggest problem is attitudes. We need to educate the public.’

“But once people raised awareness, they didn’t know where to put it. Attitudes don’t change behaviour. Behaviour changes attitudes. That’s why you have to make people do things.”

MILESTONES IN A QUARTER-CENTURY OF ACTIVISM

Twenty-five years in the disability movement – here are just a few of the many markers along the way:

– With files from the Star library

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