Stop telling people with disabilities they might be better off dead
By Lisa Bendall
Senators are currently deliberating the passage of Bill C-7, which would amend medical assistance in dying (MAiD) to allow assisted suicide for people who aren’t near death. Not all people, mind you; just people who happen to have disabilities. While many of us fear that this bill might steer vulnerable people towards an untimely death, others argue that’s a paternalistic viewpoint, and that the law would have built-in protections.
But think on this. People with disabilities are constantly bombarded with the subtle and not-so-subtle message that it’s better to be dead than disabled. Many of our friends and colleagues with disabilities say they’ve heard this over and over. We all know from experience that this does have an impact on the way people are treated in public, in private, and in healthcare. And now this same message is reiterated by the proposed Bill C-7.
“My home support case manager, on her initial visit, asked me why I didn't have a DNR posted on my refrigerator, where it should be,” says Joe Coughlin, a jazz singer-songwriter with quadriplegia in Victoria. “I told her that I wasn't ready to die yet, because I still owe my record label two more albums!”
Many people with disabilities tell of that uncomfortable moment when you visit the ER for something minor, and one of the earliest questions you’re asked is whether you’d like to be resuscitated if things happen to go south.
In 2018, Audrey King was hospitalized for pneumonia and trouble breathing. The Toronto woman has lived most of her life with the effects of polio. At one point, when she was very ill and fighting for her life, her personal support worker overheard two nurses talking: “This is cruel. Why can’t they just let her go?” King, an artist and retired psychologist, is convinced no one would speak that way of a patient who didn’t have a disability. "My life has been rich and full,” she says. “I’ve achieved far more than most ‘upright’ people, thanks to all the support I've had and continue to have.”
When my husband Ian was hospitalized in 2018 for a fairly benign medical problem, things did go south – he unexpectedly had complications that led to a cardiac arrest. He was temporarily put on a ventilator, and because of his weak muscles – he’s quadriplegic from a decades-old spinal cord injury – he needed a tracheotomy in order to come off the ventilator gradually, over a period of weeks, as he built up his stamina.
A doctor new to his case came to meet us – and to tell Ian that even with the surgery, he might never get off the ventilator. We knew that already. But to our horror, the doctor then matter-of-factly suggested another option: Ian could skip the tracheotomy, have the ventilator removed instead, and be kept comfortable as he died.
We were stunned. That a doctor charged with my husband’s care could so blatantly disregard his life, even one in which he potentially used a ventilator, floored us – and left us with lasting trauma. It hadn’t crossed Ian’s mind to give up; he had a loving family and friends and was about to start the retirement he’d earned after a long career. “I felt the doctor had shown his cards,” Ian says. “From that moment on, I was afraid of having this man as my doctor.” Incidentally, Ian was off the ventilator and back home, healthy, within weeks.
Candice Lewis of Newfoundland had a similar traumatic experience in 2016, according to CBC news. While the young woman with disabilities was sick in hospital, she overheard a doctor telling her mother that assisted suicide was an option. Mother and daughter were both shocked. This story demonstrates that so-called built-in safeguards don’t necessarily work; the doctor wasn’t legally permitted to bring the topic up, nor was Lewis’s mother allowed to give consent.
If Bill C-7 passes in its current form, people with disabilities and chronic illness will become the only group of non-dying Canadians who can choose assisted suicide if they want it. Most people with suicidal feelings are given intervention and treatment. They aren’t permitted to have MAiD, even if they feel that their situation – poverty, loneliness, depression – makes life unbearable. Why should people with disabilities be singled out?
Furthermore, until people with disabilities have proper access to the supports they deserve and need, it is unethical and unconscionable to provide them with a direct path to assisted suicide. Anyone who lacks essential supports – who is housebound because of a lack of public transportation, who is in pain because they can’t afford auxiliary therapies, who is lonely because the only accessible housing they can find is far from their loved ones, who has unmet hygiene or dietary needs because of a critical shortage of personal support workers (PSWs) – is naturally more likely to feel suicidal.
Here’s another consideration: Some people who are new to the experience of having a disability, or have a disability that progresses, may be convinced that the emotional suffering they feel will never ease. Yet after an adjustment period – which may be much longer than the “reflection period” in the proposed legislation – they may go on to live a full, rewarding life. Liberal MP Marcus Powlowski, a physician, voted against C-7 for this reason, saying, “Morally, it's incumbent upon me to stand up when it comes to issues of health and life and death.”
If this legislation passes, there is a very strong chance it will result in needless deaths and great losses to society. And that makes it a dangerous bill indeed.
Lisa Bendall is a freelance writer in Toronto.
PHOTO: Courtesy Lisa Bendall