TORONTO — Alexandre Bilodeau’s Olympic gold medal will forever be enshrined as Canada’s first on home turf. But for people with cerebral palsy, it is the freestyle skier’s tender — and very public — esteem for his brother Frederic that will long glitter in memory.
For Bilodeau, the cerebral palsy that has affected his older sibling’s speech and muscle control is just one aspect of the man he unabashedly calls his hero and daily inspiration.
So seeing the TV images of the brothers joyfully embracing near the bottom of the moguls run was a magical moment for Joanne Hutchinson, a volunteer for the Halifax Regional Cerebral Palsy Association who was born with the condition.
“It made me feel good,” said the 54-year-old, pointing out that many people with cerebral palsy avoid going out in public, especially if they have a noticeable disability or uncontrolled muscle movements or spasms.
“They don’t know much about us, they don’t have an understanding and there’s a lot of (public) misconceptions,” added Hutchinson, who hopes the focus on Frederic Bilodeau’s no-holds-barred support of his brother and his place of honour at the front of the spectators gallery will help raise awareness of the condition they share.
“So it’s marvellous that it brings attention to us.”
Craig Langston, president of the Cerebral Palsy Association of British Columbia, said the Quebec brothers’ story “speaks of inclusion.”
“Part of our mission statement is to raise awareness, to reach our potential and to realize ourselves as equals in society,” Langston, who also has cerebral palsy, said Monday from Vancouver. “I think Alex and Frederic live that.”
In Canada, an estimated 50,000 people are living with cerebral palsy. About two in every 1,000 children born will be diagnosed with the incurable condition, with premature and low birth-weight babies at increased risk.
Cerebral palsy is a general term for a group of disorders affecting body movement and co-ordination. Most cases are believed to be caused by brain damage that occurs before, during or shortly after birth, although some cases have been linked to brain injuries or infections during the first few months or years of life.
Neurological damage interferes with messages between the brain and body, causing effects that differ widely from one person to another. At its mildest, cerebral palsy can cause a slight awkwardness of movement or hand control. In the most severe cases, CP can profoundly affect both speech and movement, leading to eating difficulties, impaired bladder and bowel control, and breathing problems.
But Hutchinson, whose muscle control is primarily affected on her right side, said it would be a mistake to equate physical manifestations of CP with cognitive disability.
“A lot of people do, that’s the assumption. It is not correct,” she said. “There are people out there who cannot do anything for themselves physically. They’re trapped in a body that they can’t dress themselves, and yet have brilliant minds.”
“People with CP, we’re all different. No two people with CP are alike. Our capabilities are all different. And that’s something that to get through to the public is so difficult.”
Hutchinson is a case in point.
Born prematurely, she was diagnosed with cerebral palsy at a year old. Doctors told her parents to “take her home and love her. Don’t expect anything from her physically or intellectually. And don’t expect her to be around very long.”
“The assumption in 1956 was if the body didn’t work, likely mentally the body wouldn’t work either,” said Hutchinson, who went on to earn a bachelor of commerce degree from St. Mary’s University in Halifax.
Now reliant on a motorized wheelchair, she is unable to work but lives on her own and is able to look after herself “for the most part.”
“As long as my wheelchair is working, I do get out and about,” she said. “I’m stubborn and I keep going.”
“It’s the same for any person with disability. Give us a chance and you’ll be amazed at what we can achieve.”
Langston said having a worldwide audience witness the bond between Alexandre and Frederic Bilodeau should help improve the public’s understanding of cerebral palsy and boost their acceptance of those who have the condition.
“When you saw that embrace at the end, it was just two brothers sharing that moment. And you didn’t see the disability.”