Power of life or death
RON BULL/TORONTO STAR
Assistant Sarah Burns wheels Judith Snow into their van on Wednesday. Care providers immediately called Snow, who uses a ventilator, when the power went out. Living with a disability often means depending not only on hydro but also on individual supporters
by HELEN HENDERSON, TORONTO STAR, Aug. 22, 2003
When the world as we knew it ground to a halt eight days ago, Judith Snow barely batted an eye. Ontario and a huge chunk of the northeastern U.S. might be powerless but Snow was anything but.
At 53, she lives independently, relying on a ventilator and an electric wheelchair to get her through a busy consulting and lecturing schedule. She also has a circle of supporters she calls her Joshua committee because they help keep her safe and connected by breaking down the walls that isolate far too many people with disabilities.
As an eloquent and accomplished advocate, Snow makes living alone in a big city look easy. It is not.
A week ago, 22-year-old Lewis Wheelan was found dead in his North York apartment after being alone without power for almost 24 hours.
Wheelan was just getting his life back together after losing both legs and an arm after a broken hydro line electrocuted him on a summer job two years ago. He had been badly burned, had extensive skin grafts and needed constant air conditioning to prevent his body from overheating.
When they couldn't reach him by phone last week, his parents, who live east of Sault Ste. Marie, spent hours frantically trying to contact someone to check on him. The power outage had closed the office of the Workplace Safety and Insurance Board, which managed his medical care and supplied personal attendants to help him live independently.
By the time his mother reached someone from his church who was able to go to his apartment, it was too late.
On Wednesday, the Wheelans buried their son. Nothing will ever erase their heartache but if allowing the public a glimpse of their very private pain will help cut the danger for someone else, that is what they are prepared to do.
"Even after all that had happened, Lewis still didn't think he was vulnerable," says his mother, Melanie.
Like all young people his age, her son wanted to be independent, didn't want to show any weakness, believed he woud live forever.
"People in the building knew Lewis," she says.
"But nobody thought to make sure he was okay."
"There should be some sort of emergency procedure in place among tenants in all apartment buildings. Everyone says privacy issues make it difficult but there has to be a way people can get together and set something up."
Once upon a time, when communities were smaller, people knew how to look out for one another.
Today, living independently with a disability too often means being at the mercy of a support system that is seriously underfunded and overburdened.
Circles of care and support, like the one Judith Snow has, do not develop naturally. They have to be built.
A few specialized apartment buildings with long waiting lists offer on-site support.
And for a monthly fee in the $40 to $50 range, a number of companies offer high-tech emergency buttons on necklaces or wristbands that connect the wearer with an emergency referral service. But few people with disabilities can afford the fees.
The maximum support payment for an individual in Ontario is $930 a month and most receive much less.
And the real issue is about making communities inclusive, respecting and welcoming all different types of abilities.
"We all have the capacity to be good people; it's just that a lot of things get in the way," says Nathan Ball, executive director of L'Arche Canada Foundation, part of an international community started by this country's Jean Vanier, son of a former governor-general.
L'Arche is dedicated to building communities where people with and without disabilities live together, building on their respective talents and feeling that they belong.
Vanier has always believed that those who might appear weaker in the eyes of the world are, as he puts it, the true "heart of the community;..(they) have an incredible power to change people's hearts." It's just that too few people ever pause long enough to discover that.
"We are all less vulnerable when we are connected," says Marilyn Dolmage, whose son Matthew works hard at changing attitudes and improving opportunities for connections.
Among other things, Matthew, who has cerebral palsy, volunteers at the Karma Food Co-op and Romero House, which helps refugees new to Canada build new lives.
He doesn't have a formal circle of support but his work in the community contributes to a circle of give and take, forging reciprocal bonds.
In addition to personal care attendants, Dolmage has three people working for him as assistants. All went to great lengths to keep working during the blackout.
"We've been socialized to expect `the system' to care," says Peter Dill, an advocate who works with many people who have intellectual disabilities. "But the system doesn't care. It's people who care."
As the parent of a child with disabilities, "you can't help but feel how vulnerable our kids are," says Barbara Osteroff, co-director of the Family Alliance advocacy group. Osteroff's son Jeremiah, who just turned 17, has had a circle of support for about a year.
For many families, it's hard to ask others to help but "people told us they were honoured to be asked," Osteroff says.
When the power went off last week, Snow says she got two calls immediately: one from a member of her Joshua committee, the other from West Park Hospital, which supplies her ventilator.
Snow has what's called "individualized funding," which allows her to manage her own schedule for personal assistants rather than being forced to conform to agency schedules and capabilities.
During the blackout, the personal assistant scheduled to be with her during the evening understandably was going to have difficulty getting there. So Snow and the assistant who was with her at the time jumped in Snow's van and headed north to offer transport.
On the way home, Snow's van broke down. So they got out and started to make their own way.
"Suddenly, we saw a Wheel-Trans bus waiting to make a left-hand turn," says Snow. "So we tried to flag him down and he stopped and took us on."
When the chips are down, she notes, people do amazing things. The trick is to make that attitude part of everyday life.
Next month in Toronto, a memorial service is planned for Lewis Wheelan.
"People are way too isolated today," says his mother. "In the end, it comes down to the common person. We all have to help each other."
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