‘You can’t make this kind of stuff up’
Disability advocate and columnist Linda Crabtree pens autobiography: Me and CMT
She stood gripping a cane at the bottom of a portable staircase pondering the steps that led up to a small airplane.
Linda Crabtree, a woman who has penned The Standard’s column on disability issues for 22 years and an advocate for people with disabilities, could not get up the stairs, to board the plane, to fly to Ottawa where she would receive an award honouring her work on disability issues.
The irony was delightful. Someone offered to carry her up. Crabtree politely declined and offered a different plan. “Look, let me do it,” she said, then promptly executed a 180-turn, plunked her butt on the first step and proceeded to push herself backwards up the stairs with her arms, lifting her torso to the next step.
Crabtree lives with CMT — Charcot-Marie-Tooth disease — a genetic, progressive neuromuscular disease. There is no cure and it affects some three million people worldwide.
Always a journalist, she suggested to her travelling companion that a photo might be in order.
“I don’t miss these things,” says Crabtree, 74. “You need it as evidence. I don’t let these things slide.”
When she arrived at the top, she accepted the help to the seat. She made it to Ottawa. Received the award. And then wrote a scathing letter to the organizers pointing out their oversight.
“I gave them royal hell afterwards,” she says in her blunt columnist voice.
Truth is, stairs just might be the metaphor of her life.
In concrete ways, they have been physical roadblocks. In high school, she was bruised and sore from regularly falling down the stairs whenever a group of students brushed past her and left her teetering to catch her balance. She has been denied employment simply because a building is not accessible. Yet in many ways, stairs have been her symbol of empowerment. For as many obstacles that she has faced in life, she has always found the will to keep climbing.
Her latest accomplishment is a book about her life: CMT and Me, An intimate 75-year journey of love, loss and refusal to surrender to a disabling disease (Amazon, $27). Crabtree has pulled memories from more than 50 years of handwritten journals and the corners of her own lived experience, to offer a personal story of her life with a disability.
And yet, the anecdotes she shares offer a very human, very female, very vulnerable and honest account of her life, at times in tantalizing detail. She writes about past boyfriends and her failed marriage. Threats from another reporter. Depression. And more. Much more.
All true stories, she says, although with a playful eye twinkle she adds she needed to change the names of some characters.
“You can’t make this kind of stuff up,” she says.
“If I can’t be honest and true to myself then I don’t want to write it at all.”
Indeed, the very act of authoring a book speaks to her inherent gumption. The disease is an unrelenting thief, stealing independence little by little.
She has not walked in 20 years. Her fingers are bent and pulled into her palms. Her hands are so weak, she can barely hold a fork to feed herself or a brush to style her hair. She used to bang out newspaper stories on an Underwood typewriter, defiantly pecking keys with the ends of two small pencils, woven between her fingers.
Her hands are too weak to hold a pencil now. Her defiance is still intact. She types on a computer keyboard with the knuckles of her pinky fingers.
Yet even that was too daunting a task for a book filled with some 690,000 characters, so she dictated it using speech-recognition software.
Her brazenness to challenge the inevitability of a disease began in childhood, she says. Her mother, the late Dorothy Crabtree, never sheltered her daughter who walked like a clomping horse, lifting her feet well off the ground from her thighs, then flipping her foot forward in hopes her heel hit the ground to support her weight.
She built forts with the neighbourhood kids. Ran. Played hide and seek. And learned to ride a bike after many push-starts by her friends. “It was wonderful. It was freedom,” she says.
Her floppy ankles were fused tight in her late teens to improve her gait.
She was confident. When she looked in the mirror, she saw a beautiful young woman with bangs and a paige cut. When she worked in The Standard’s library and archives, she’d buy pretty clothes and frilly skirts with crinoline from Fashion Cloak and Fur in the downtown.
She smoked. Enjoyed alcohol with the best of them. And participated in many adventures and other exploits with an assemblage of boyfriends.
One in particular, involved being chased by police on the back of her boyfriend’s motorcycle, speeding through an orchard.
She thrived in Montreal at art school. And when she returned to work at The Standard, her writing career flourished with responsibilities that included an art page and a working trip to New York that came about after convincing her editor to pay all expenses.
Meanwhile, her personal life was in trouble. She lived paycheque to paycheque, and sold artwork on the side. Her first marriage failed after nine years. In her words: My lasting memory of those years is one of a half-consumed bottle of beer with a half-smoked cigarette in it — and I’d paid the price for both.
She walked away, happily, with an important life lesson. “Look after yourself first. If it isn’t going to be good for you, then why do it?”
She bought herself a bright yellow Honda equipped with hand controls. And took out an ad in the personal section of the paper. That’s how she met her husband of 37 years, Ron Book. Together they ran CMT International, a charity run by and for people living with CMT worldwide.
Crabtree was the voice and heart of CMT, Ron handled the business end. She wrote and edited more than 100 newsletters. And when it folded in 2002 — largely due to exhaustion on her part — the newsletter was distributed to more than 40 countries.
On this day, she sits in her home office, in a house custom designed for living with a disability. It is bright and cheerful, with more than 14 skylights to invite the sun in when she cannot go outside. The walls are filled her with paintings and art. Bookshelves are lined with old photographs.
There are many framed medals and certificates on her wall. Order of Canada. Rick Hansen Award. David C. Onley Award for Leadership in Accessibility. Order of Ontario.
Her head is full of ideas, she says. Projects. Another book. She writes a blog and newspaper column. In the summer, she gardens in raised half wine barrels. She grieves her losses, then soldiers on.
“Maybe you shed a tear in the shower, but then you get on with life,” she says.
She writes as she lives. Fiercely. Deeply. And without remorse.
She hopes her book transcends disabilities and touches all people.
“When a woman writes, she writes for all women,” says Crabtree.
“It’s my life and that’s the way it is. And yes, it’s personal. But that’s what life is.
“I’m still a woman. I’m still a wife. I’m everything I’ve aspired to be. I just live with a disability on top of it all.”