“We have a spinal cord injury and he’s not going to make it.”
Those words, spoken by a paramedic, still resonate in Roger Jones’ memory, 23 years after a car accident that changed his life.
He was a passenger in a friend’s car as they drove down a dark Nova Scotia highway late at night. The driver had fallen asleep, the car hit the median, flipped and the roof collapsed.
Jones, who once stood 6’5”, had his spinal cord broken—the C5 and C6 vertebrae to be exact.
When he woke his head was dangling on his chest and the pain was unbearable.
The responding paramedics were surprised Jones survived such a traumatic injury but knew he was likely to die soon after.
That’s when Jones heard one of them say those words.
“For me that was more traumatic hearing than anything else that happened. I knew they were talking about me and I knew I couldn’t move,” said Jones.
But he defied them all. Although it took some doing.
He spent a year in hospital undergoing numerous surgeries and had to learn “everything all over again.” After that it was a year of rehabilitation in which he was finally able to use his hands.
Jones’ physiotherapist told him he was a “difficult” patient and in the same breath said it was the difficult ones that succeeded in relearning the physical movements they had lost.
Jones, who played three years of men’s basketball at Dalhousie University, also showed a stubborn and independent streak. As soon as he was well enough, he wanted out.
From the moment he was wheeled in on a gurney, Jones told himself he would one day leave. Even though he was a quadriplegic, he resolved to live independently.
As many disabled people at the time were beginning to do, as a larger movement towards de-institutionalization was taking over, he was driven to go it alone.
From his hospital bed he investigated his options and talked to people about how he could regain his independence. And once he had a plan, Jones bought a house, had it retrofitted for his needs and hired assistance—all from his hospital bed.
At the time, quadriplegics living independent lives outside of institutions was a foreign idea. Both the medical profession and government fully expected him to continue to live in an institution.
“I was stubborn, so when I was in rehab I was already organizing what was going to happen to me when I got out into the community. I actually had my house set up for when I left the hospital so I went right into living independently with an attendant,” said Jones.
“It wasn’t the way things usually work but that’s what I wanted.”
Today, Jones lives in Burnaby, moving here from Nova Scotia for the mild weather and more disability-friendly facilities, infrastructure and programs.
He’s self-employed and usually has two or three ventures on the go. One of his latest is importing wheelchair-accessible vehicles from the United States. The vans are cheaper south of the border, as are many other products required by the disabled.
“It’s a very exploitive business with anything to do with disabilities and seniors,” said Jones. “Companies can call anything medical and raise the price by 1,000 per cent. So something you would buy for $1 would cost me $10.”
Aside from business interests, he has also become something of an advocate for the disabled.
He wants more programs that will allow quadriplegics to live independently like him.
“Everyone should have the chance to live independently if they want to. There’s no reason for anyone to live in an institution. I can’t think of a single scenario where they can’t live on their own,” said Jones.
Simon Cox agrees.
The executive director for B.C. Association for Individualized Technology and Supports for People with Disabilities (BCITS) helps make that possible with technology that assists the disabled.
There are no longer any barriers preventing independent living, Cox says.
“I would absolutely say most people can live in the community. Even if they’re on a ventilator,” said Cox. “B.C. is one of the first places in North America to realize that people could live an independent life.”
And he’s amazed what quadriplegics can contribute when they do live in the community.
Many are artists, stockbrokers, real estate agents and hold other jobs. Some are married and have families.
“When they first started to move out of institutional settings, many people thought it was the wrong thing to do, that people would die,” said Cox. “They thought (quadriplegics) had to have medical people around all the time.
“But that’s not the case. And they’re better off not living in institutions.”
Some quadriplegics are hard core about their independence, said Jones. They’ll spend hours making a meal or getting out of bed.
But Jones says his dedication to independence has its limits.
“If it’s going to take me an entire day to make a meal, that’s something other people can do for me. I used to spend five or six hours a day just trying to get my day started. That’s crazy, I’ll never have a life, get a job or whatever.
“So for me, having that assistance made me more independent, as opposed to doing it myself.”
As an advocate for quadriplegics living in the community, Jones encounters resistance, mostly from government or the medical profession.
At a recent appointment with his case worker, it was recommended that he look at moving into an assisted living facility.
“Why would they even suggest something like that?” he asked.
“Any problem we experience, rather than ask ‘What can we do to help you,’ they suggest, ‘Why don’t we put you in an institution.’ That’s still the mindset. It has not changed.”
Technology has been the most significant factor in helping to live independently, but government support is also key.
Government programs, however, are notoriously unreliable. With the swipe of a pen, they can be eliminated or a person could come across a government official who has a different definition of disabilities and needs, said Jones.
“We live in fear that tomorrow we’re going to be living in an institution.
“If they take away the supports that I have, I won’t be able to live independent.”
That would be a shame, said Simon Cox.
Through his work with the severely disabled, Cox is amazed at the strength people show overcoming adversity. Many become quadriplegics after an accident and experience a life change many people would consider tragic.
“They go through a terrible time when they wake up in the hospital on a ventilator and their life is changed. They think their life is over,” he said.
“But it’s amazing how many of those people would say they wouldn’t change their life for anyone else’s.
“That’s their human spirit.”