OTTAWA – Steven Fletcher slowly makes his way through the narrow doors of his office, down the hall to the elevator and up to the fifth-floor cafeteria in Parliament’s Centre Block. His assistant, Stephanie Ross, pushes on the wheelchair-accessible button, and the glass doors open wide.
“Watch behind, Steven,” Ross tells him, and he tries to navigate the lunch rush of MPs, staffers and journalists in search of a quick bite.
He waits by the cash as Ross places his order: an omelette with peppers, bacon and onions, a side of brown toast and a chocolate milk.
Using what little movement he has, Fletcher clicks the headrest on his wheelchair back and forth like a joystick.
“It’s brainwaves,” he says, before explaining how the chair really works.
He lets out a chuckle.
“Several world leaders have fallen for that joke.”
A C4 quadriplegic, Fletcher was paralyzed from the neck down in 1996 when his car hit a moose in northern Manitoba.
Now 42, Fletcher knows he is a rare breed.
“You usually die at the accident scene,” he says.
Fletcher, a Conservative, is the first quadriplegic MP in the House of Commons, elected to represent a Winnipeg-area riding since 2004. An engineer before his accident at age 23, he also served in Prime Minister Stephen Harper’s cabinet, as the minister of state for democratic reform and transport.
These days, however, it appears his legacy will be forged on a much more personal issue: doctor-assisted suicide.
After he was removed from Harper’s cabinet in 2013, Fletcher publicly took up the cause he had quietly championed for years.
Going against his own government’s position, he crafted two private members’ bills that set out guidelines for doctor-assisted dying in Canada.
Earlier this month, the Supreme Court agreed with Fletcher, striking down the laws prohibiting physician-assisted suicide and giving Parliament one year to draft new ones if it chooses.
Fletcher has now become the de-facto face of the debate: someone who embodies the precariousness of life, and understands all too well how quickly it can change.
In early 2012, Fletcher had to have another surgery, after doctors discovered a rod in his neck had become loose.
“I made it very clear to the doctors that if my cognitive ability or anything else went wrong, just to walk away from the table,” Fletcher says.
“I said it several times in front of both doctors and my family…I would have expected them to do that – walk away.”
Back at his office, Stephanie cuts a piece of omelette and feeds it to him. She straightens his tie, places his hands on his lap, and wipes his mouth.
This is the reality.
Fletcher lives in renovated condominium in the downtown ByWard Market, not far from Parliament Hill. A rotating group of seven caretakers, working 12-hour shifts, look after him at work and at the office.
I ask how he got used to having people around all the time.
“I don’t think you ever get used to it,” says Fletcher.
“You just have to deal with it.”
‘What we’re paid to do’
When Fletcher first came to Parliament Hill, it was clear that few people had ever met someone with a severe disability.
Waiters in the Parliamentary restaurant would defer to his caretakers when asking for his order, assuming he had a cognitive disability.
Once, when giving his parents a tour of Parliament, a senator came by to say hi – and not knowing how to greet him, patted him on the head instead.
“So you wonder why we don’t have the best laws,” Fletcher says.
And that, in Fletcher’s opinion, is about to change.
In January, the Supreme Court unanimously struck down the laws prohibiting doctor-assisted death, when applied to competent adults with a grievous medical condition that causes endless and intolerable suffering. The court did not specify terminal illness.
Fletcher calls the decision “totally predictable.”
He just wishes Parliament had acted first.
“I know it’s difficult, and I know it’s tough. That’s no reason not to deal with it though. That’s what we’re paid to do.”
In 2010, a Bloc Quebecois private member’s bill on dying with dignity was defeated in the Commons. No one, save Fletcher, has touched it since – a phenomenon he blames on all parties, not just his own.
“I think that these issues should be dealt with in Parliament and not by the courts,” says Fletcher.
“Parliament had that opportunity, and it didn’t take it.”
Last year, Fletcher crafted two bills that set out guidelines for doctor-assisted death, as well as a commission to monitor the law. He says he warned all relevant officials and that Harper has known his position on assisted suicide for years.
“There was never any feedback, but there were no surprises,” he says. “I did not ask, nor did I seek, permission.”
But his bills are low on the priority list in the House of Commons. So Conservative Senator Nancy Ruth has tabled a similar bill in the Senate, which shares characteristics with the Supreme Court’s decision.
Fletcher hopes the bill makes it to committee before this year’s election, scheduled for October.
Asked what has changed since 1993, when Sue Rodriguez brought the right-to-die debate to the Supreme Court, Fletcher answers, “empirical evidence.”
“We are now able to look at other jurisdictions, and the slippery slope argument is proven not to be reality. Palliative care has actually improved in jurisdictions where they allow physician-assisted death,” he says.
Quebec has already passed its own dying-with-dignity bill. While it’s possible the Conservatives will leave further legislating up to the provinces, Fletcher believes Parliament has to “fill in the gaps” of the court’s decision in federal law.
Those gaps include: making it clear the adult is over 18, is lucid and aware of what he or she is asking for, and that the act needs to be done or supervised by a physician. Nancy Ruth’s bill would also require two doctors to approve consent.
There’s also the matter of how long someone must wait before they make a decision to end their life, and when physician-assisted death could occur. In Fletcher’s legislation, it’s 14 days.
“But what if someone…is in early stages of dementia and wants to say, have a statement that will apply 10 years from the present moment? I don’t have the answers to that,” he says.
If a free vote were held today, Fletcher believes his bills would pass. “Absolutely. In the Senate and in the House of Commons.”
Most importantly for Fletcher, it appears the public is on his side.
When he introduced the bills last March, Fletcher said he was flooded with thousands of emails from the public.
“The emails I received after I introduced the bill were heart-wrenching. People telling me about their own personal stories. I’m just – I’m a stranger,” he says, eyes opening wide.
“But people felt that they could share their stories and were thankful for the introduction of the legislation.”
I ask if he – or rather, a staff member on his behalf – replied to all the messages.
“Quite frankly, in probably the majority of the cases, I just don’t know what to say. What do you say?” he asks, voice breaking.
“It’s so personal, and so sad, and devastating. It seems that anything I would say would just be empty in comparison.”
He looks down and speaks softly.
“Life can be very unfair.”
Peace of mind
For four months after his accident, Fletcher couldn’t speak. He couldn’t sleep. He could barely eat. It took him six years before he could drink a pop again.
“When my accident happened, things were bad. And it was terrifying,” he says.
“Can’t talk, can’t move, fully cognitive, can’t sleep because they’re sticking a tube down my nose to take the phlegm out of my lungs. You can’t sleep through that. No amount of pain medication is going to deal with that.”
When he could finally get words out, he told his parents and siblings that he loved them.
The second phrase was: “I’d like to speak to my lawyer.”
“If I’d known that there was something called physician-assisted death – not that I would use it, because I was close to the beginning of my life – but it would have provided a lot of peace of mind,” he says.
“Most people are not going to use physician-assisted death. It’s going to be a peace-of-mind issue. They will know that if worse comes to worst, they’re not going to be trapped in their own bodies.”
Watch: 16×9 Life, Death and the Law
Fletcher now has a living will.
It sets out conditions in which he no longer wants to live – if he lost his sight, hearing or ability to speak, or if he suffered serious brain damage.
“Essentially, I live in my head,” he says.
Some of the provisions, he says, are not legal – but he keeps them in.
The fear of the unknown returned in January 2012. Doctors discovered a rod that had been surgically placed in the front of his neck when he first had his accident had become dislodged, and was pushing into his throat.
It turns out the rod was not properly screwed on in the first place. There was a hole in his esophagus, and two vertebrae had dissolved. He had to have major surgery.
The experience reminded him that pain cannot be controlled.
“Nothing has changed, from my perspective, in the 17 years between the surgeries,” Fletcher says.
The surgery was a success. The rod was replaced, this time in the back of his neck.
Leaning his head forward, Fletcher proudly notes he only missed four sitting weeks of Parliament, with the prime minster and former chief of staff Nigel Wright’s blessing.
In his downtime away from politics, Fletcher focuses on his other interests: his love of history and flags, cultural events such as the symphony and theatre, and playing with his nieces and nephews.
As long as he has the proper care and equipment, he says he plans to live a long time.
Still, it’s not difficult to think about what he’s missing.
“Being a husband and father is not something that is part of my reality. So in that sense it’s unfortunate. And I loved canoeing,” he says.
“Canoeing, family and sex. And not necessarily in that order.”
Fletcher is grateful for the attention physician-assisted death has gotten this past year. At the very least, he says, it means Canadians are thinking and talking about it with their loves ones.
“It goes to the core of, what is life?” he says.
“And I make a distinction between life, and living. Life could be being on a ventilator for 20 years, and unconscious in a coma.
“But living is experiencing life.”