By Jennifer Power Scott

June 13, 2017

When Heidi Sparks looks at her husband, there’s one thing she doesn’t see: his disability.

“From the first time I met Jeff, I never saw him in his wheelchair,” says Heidi, who emigrated from Germany to Canada in 2014 to start married life in southern New Brunswick.  “We had conversation, we started talking to each other and built up a friendship.”

The couple’s love story plays out like a 21st-century episode of The Love Boat.  Jeff Sparks and Heidi Schenk met aboard the Explorer of the Seas cruise ship in 2013 and became friends. When the cruise ended, they spent months getting to know each other via Facebook and Skype. And then, exactly a year after they met, they were married in Heidi’s hometown of Koblenz, Germany. They now live in Quispamsis, a suburb of Saint John.

“I get a lot of questions,” Heidi says. “People asking me the stupidest questions, like, ‘Can you have a normal life?’ And I say, ‘Why?  Why is there a question?’ After they have known him, they see what is possible. We do almost everything other couples do. … Of course, sometimes we are limited, but we find a way to take off that limit.”

Jeff, who grew up in Saint John, has been breaking limits for most of his 42 years. He graduated near the top of his Bachelor of Business Administration class at the University of New Brunswick in Saint John in 1996 and went on to earn a master’s degree in industrial relations from the University of Toronto. He’s a senior executive with Muscular Dystrophy Canada and Chair of the Premier’s Council on the Status of Disabled Persons.  He volunteers with several organizations, including PRUDE Inc., the Human Resources Association of New Brunswick and the Saint John Ability Advisory Committee.

All of that from someone the doctors said wouldn’t live past the age of two.

“When I was ten months old, my parents noticed I wasn’t turning or moving like a normal baby would,” he says. “They took me to the doctor. They ran a bunch of tests, including two muscle biopsies.”

After Jeff had been in the hospital for two weeks of testing, his mother, Sharon Sparks, couldn’t wait for answers any longer.  She phoned a doctor – and was told Jeff had spinal muscular atrophy (SMA), a rare genetic disorder that affects muscle control.

“The doctor said he would be lucky to see his second birthday,” says Sharon, her voice breaking with emotion at the memory of that life-changing phone call. “It was pretty devastating. … So many nights, I thought of him dying and planned funerals.  Never did I dream I would have Jeffrey to be 43 this year.”

The doctors were right about the SMA.  But they thought he had Type 1, the most severe form.  In fact, he had SMA Type 2, a non-fatal form of the disease.  His life, as it turned out, would extend well past babyhood.

“I turned two,” Jeff says, “and guess what?

Jeff never walked, but he could feed himself and write as a little kid, and he had his first motorized wheelchair by the age of five. When it was time to enrol in school, his parents were told he would be placed in a special needs class.  In those days, he says, it was known as the ‘C.P. program’ – short for cerebral palsy.

“It was basically a place where kids with disabilities could go and sit all day and colour and not learn,” he says. “My parents knew that I had no intellectual challenges, so they, with their friends and family, fought and fought and fought the school board.”

It paid off. In grade one, Jeff was in the regular classroom at M. Gerald Teed School. With the help of a full-time educational assistant, he learned, played and reached his academic potential.

“There would have been no future for him in that (special needs) program,” Sharon says. “Jeff was very bright … and very willing to learn.”

Later, at Saint John High School, Jeff was a grad class rep and a member of the yearbook committee, and he performed in a production of Grease. His assistant – the same woman who had been with him since grade one – did notetaking for him in class, while his mother helped with homework.  Among more than 300 graduates in the Class of ’92, Jeff was in the top ten.

Still, it wasn’t always easy being a teenaged boy who couldn’t drive a car or swagger up the sidewalks.

“When I was a teenager and a young man, some of the guy feelings starting to kick in, and I was a little jealous of the other guys,” he says.  “That was a little frustrating.  But I’m very good at focussing on what I have and not what I don’t have.”

For Jeff, a turning point was landing his first job.  At 16, he was hired as a counsellor at Camp Rotary, which offers programs for kids with physical, developmental and learning disabilities amid the stunning scenery of Sunnyside Beach.  He worked there for six summers.

“To me, the paycheque wasn’t the big thing,” he says. “It was the independence.  I got away. I didn’t have my parents there to care for me, so I needed to learn how to manage my own life, direct my own care.  And I got to live the life of a teenager. So, on my days off, I was sneaking into the bars in Fredericton and doing the things that a so-called ‘normal’ teenager would be doing.”

Jeff started his degree at UNB Saint John the year he finished high school.  On campus, he was known as a high-energy person who served on student council and an ability advisory committee.  And although he graduated near the top of his class, he couldn’t find a job.

“I spent a year looking for work,” he says. “No luck, despite the fact that I had an amazing resume. Back in the early 90s, businesses just couldn’t see past my disability. They saw the wheelchair.”

Finally, in 1997, Jeff was offered a job with Andersen Consulting, the multi-billion-dollar international company now known as Accenture.

There was just one catch: The job was in Toronto.

“It was a little scary being halfway across the country from my family and my friends,” he says. “But luckily, one of my attendants at the time was looking to make a change in his life. So, he packed and moved with me.”

When it came to employment equity and open-mindedness toward people with disabilities, Jeff found Toronto was far ahead of the rest of the country.  He says Andersen Consulting even covered the $100,000-a-year cost of his 24-hour care.

“At the end of the day, (Andersen) saw my potential, which is the most important thing,” Jeff says. “They also recognized that it was their responsibility to have a diverse workforce.”

But not everyone in the company was welcoming. One day, Jeff’s caregiver said something during a meeting.  An employee looked at the caregiver and said, “I thought you were just the paid hands and feet.”

Offended, Jeff had to set her straight.

“What you’re saying is inappropriate,” he told her. “I need this person. And they’re a person too.  I don’t think of my caregivers as being hands and feet for me. They’re a part of my life.”

Jeff stayed with the company for four-and-a-half years, completing his master’s degree at the University of Toronto in his off hours.

“Achievement is very important to me,” he says. “I want people to see that I have the potential to go above and beyond expectations. I also knew it was important to my career – that if I wanted to advance, I had to have the highest level of education possible.”

In 2001, Jeff’s near-idyllic big city life fell apart. The company downsized, and he was laid off.  After six fruitless months of searching for work in the Big Smoke, he says he had no choice but to go home to Saint John.

“I moved from being totally independent in a fully-accessible apartment … to having to move back in with my parents,” he says. “So that was difficult for all of us.  Big shift. … I spent about three or four years after that looking for work.”

Finally, in 2005, Jeff heard about a job opening with Muscular Dystrophy Canada, which works to enhance the lives of people with neuromuscular disorders. At the time, Jeff was a volunteer member of the organization’s national board of directors.

“I resigned from the board, applied for the job, and was successful,” he says.  “And I’ve been there ever since. … I live with the disease, so I know personally the benefits of what the organization does. But seeing the impact that it has on other families, systems, governments and professionals really is what makes me proud of my work.”

Jeff works at an office in his modern, sprawling bungalow on Minstrel Drive.  As Muscular Dystrophy Canada’s National Director of Volunteer Engagement and Organizational Development, he has full-time hours and a flexible schedule.  He manages his own 24-hour care, and employees do his keyboarding and some other tasks.

But while Jeff enjoys the convenience of working from home, his job requires him to travel several times a year.  Flying with a custom-built motorized wheelchair that cost $55,000 can be an ordeal.

“I am very conscious about it getting broken,” he says. “I have had significant damage flying in the past. So when we travel, I take two caregivers with me. We take everything off my wheelchair that can break, pack it up in a big Tupperware container, put it in baggage with my chair.”

On top of that, Jeff has to endure uncomfortable airport wheelchairs as he goes through security and boards airplanes. Still, giving up travelling is not an option.

“Number one – I know it’s important for my job,” he says. “And it gets me out. I love seeing the world.”

Jeff travels not just for work, but for fun too.  He has been on five cruises, his “vacation of choice” because of the superb wheelchair accessibility on ships. When he boarded the Explorer of the Seas in New York City with his mother, brother, two caregivers and his brother’s girlfriend four years ago, he couldn’t have guessed he was about to meet his future wife.

Heidi, who was aboard that ship to celebrate her fortieth birthday, calls her husband a fighter.

“I think that’s his personality,” she says. “If he has an idea, he makes it happen. That’s how he was raised, with all the attention in his family, especially his mother and Dad. That’s what he’s fighting for. Everybody has a chance to live a normal, independent life.”

Jeff says he likes the way Heidi doesn’t see his wheelchair – and he wants others to be more like her.

“It’s not the disability, he says, “It’s the person. I’m not a disabled person. I’m a person with a disability. And the disability is only part of who I am. And I have the same needs, wants, desires, feelings as somebody who’s not in a wheelchair.”

As for his future, Jeff is continuing to build his career as an executive – and he’s considering running for provincial or federal office one day.  For him, the key to success is being optimistic and persistent.

“A lot of people give up when they face great challenges, and they think it’s not worth the energy,” he says. “But if my parents didn’t put the effort into me being the engaged citizen that I am today, I wouldn’t be where I am.”