'Scarman' delivers inspiring message to live life to the fullest, disability or not

Ward Foley wasn't born with the odds in his favour, but living with a debilitating disorder hasn't stopped the 58-year-old author and disability advocate from living his life to the fullest.

Foley, who nicknames himself Scarman, was born with arthrogryposis multiplex congenital, or AMC, a neuromuscular disorder that affects around one in 5,000 new borns and severely restricts a body's joints and movements.

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"We're given a life — not a good life or a bad, that is up to us," Foley said in a lively and humourous talk to students and parents at Bert Bowes school Tuesday night, part of a disability awareness event to promote empowerment and empathy.

"Our perception is always ours."

Childhood wasn't easy for Foley — he was born with club hands and feet, and lacked muscles in his biceps. Among his peers, he was teased and called names like Cripple, Monkey, and Frankenstein; among his family and doctors, he saw care and treatment, undergoing surgery, skin grafts, and muscle transplants to fix his hands and give him biceps to improve his movement. He had to wear leg braces 24 hours a day.

But he'll never forget the day he first tied his shoes in Kindergarten, an effort that took 30 minutes: "I got a green sucker," he says.

The difficulties are familiar for those with a disability, growing up and trying to find their identity and a peer group, and carve a place for themselves in the world. But through it all, Foley recognized everyone goes through the similar struggles, disability or not. There are scars both seen and unseen, he said.

"Learning and acceptance is a process," he said. "We've all been laughed at, we've all been teased. We have to keep walking or wheeling our chair, and never look back."

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Ward Foley will never forget the day he first tied his shoes in Kindergarten, an effort that took 30 minutes: "I got a green sucker," he says. - Matt Preprost

Foley certainly hasn't. He's given more than 1,000 speeches about living life with a disability across the world; a life of travel and adventure that saw one of his first jobs at Taco Bell make him a model employee that helped open new stores; that saw him ride a bike across Canada, and stare death in the eyes in a major car accident; that saw him go to broadcasting school and turn down a radio station job to work with children instead.

"Life is simple. It's about love, unconditional love for everyone, starting with yourself," he said.

Foley didn't meet someone who also lived with AMC until he was 19, a man named Paul, but today's digital world has helped those living with the condition connect, meet, and build community.

At an AMC conference in Las Vegas last summer, Foley met Bert Bowes student Trinitey Douglas.

Douglas, who said she chose to go to the conference instead of a Lady Gaga concert, invited Foley to the school and he couldn't say no.

"It's important to me for everybody to see a disability and for it to be normal," Douglas said. "Ward is good at getting kids to interact."

Douglas was able to get his Foley's trip sponsored with the help of the school district and local companies, as well as student fundraising.

After Foley's talk, students took part in a number of disability situations, from vision impairments to using a wheelchair to what it's like living with club hands. Having students know what it's like living with a disability helps them build compassion, Douglas said.

"It's important they understand not everyone is like what they believe is normal," Douglas said.

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Participants have their hands tied to simulate what it's like living with club hands. - Matt Preprost

Teacher Megan Inglis said she first met Douglas last year, where they began working with her classmates and simulating what it was like living with club hands and how difficult it can be to open a backpack or pick something off the ground.

"She was frustrated kids were not understanding why she did things slow or different," Inglis said.

"The kids were receptive. They were able to empathize with her at that point."

Over the last year, Inglis said she has seen Douglas grow from being quiet and shy and into a more confident person.

Foley is spending a second day at Bert Bowes Wednesday where he and Douglas continue to talk to students and have them take part in group activities.

For more information on Foley, visit wardfoley.com

editor@ahnfsj.ca

© Copyright 2018 Alaska Highway News

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