Canadian leaders should defend human dignity in life — not just death

While the country pores over the election results, I want to bring it back to one important moment during the campaign —one that should be a point of focus for our new government. 

During the French language debate, Lise Pigeon was one of a handful of ordinary Canadians who was granted the opportunity to ask a question of the six federal party leaders.

She began her moment in the national spotlight with a self-introduction calibrated to make her listeners squirm: "I'm 63 years old. I have multiple sclerosis.… I can't walk anymore. I am in pain, I wear adult diapers, I have bedsores and that's not the end of it."

As a Canadian who also lives with significant disability, I've used the same technique as Pigeon's, invoking bedpans, feeding tubes and naked helplessness in places where such matters are not spoken of. People with unconventional bodies like ours must always choose, when entering the public arena, between invisibility and spectacle. Sometimes you simply want to be seen.

And seen she was.

Everyone – the party leaders and journalists, the live audience and perhaps millions of viewers nationwide – all of us together, took in her question: "In order that you, your loved ones, and all of us will one day have the right to die with dignity, will you promise voters, yes or no, to soften the current [medical assistance in dying] legislation… without… creating additional obstacles?"

Quebec Superior Court decision

The question was timely. Back in September, a Quebec Superior Court justice invalidated parts of the federal and provincial laws on medically assisted dying, which she deemed too restrictive. She found that the Criminal Code requirement that death be "reasonably foreseeable" to qualify for medical assistance in dying "infringes life, liberty and security of the person" as guaranteed by the Charter. 

Six answers followed Pigeon's questions about loosening restrictions, each a careful variant of "yes" — along with the promise to amend federal law on medical assistance in dying, heartfelt expressions of sympathy, and tributes to Lise Pigeon's courage, words of thanks and admiration.

At the end of all of this answering, a spontaneous round of applause.  But what were Canadians really applauding?

• Quebec judge overturns parts of federal, provincial laws on medically assisted dying
• Montrealers who challenged assisted dying laws see ruling as 'ray of hope'

To be clear, it does take courage to fight back stigma, to declare oneself equal in a world that most often shames you. However, from my vantage point as a lifelong disability activist, I hear a different tone.

I recoil from outbursts of pity, the sad-faced gush of awkward privilege. Misplaced admiration repels me, too. Always the inference that we must be very brave to cart our broken selves around in this world, enduring years or decades of life not worth living.

I'm glad that Pigeon got the respect that she deserves – that we all deserve – when she stepped forward to engage in our civic conversation. But I strongly disagree with her stance on the state of Canada's medically assisted dying law. And I'm not certain that her weighty question got the considered attention that it deserved.

On that night of big ideas, why not talk of radical transformation, not just for able oil patch workers, but for all who provide care, and all who, by our very lives, form culture, community and family? Why no bold imagining of how life might be different – 30, 40 or 50 years of it – with multiple sclerosis? 

Why, when speaking of change to a consequential law, no sober commitment to an evidence-based approach, no careful weighing of policy objectives, no affirmation of the constitutional processes of the democracy we hold dear?

Improving conditions for life

Great care must be taken – as it was when our medical assistance in dying laws were first drafted – to preserve a place of safe welcome for every citizen. Even the slightest compromise to the core value of inclusion can set in motion the unraveling of a just and caring society.

All 6.2 million disabled Canadians and our families deserve more than heartfelt emotion.

During that French-language debate, a woman of my demographic who struggles with pain and the distressing symptoms of decline requested permission to die. The leaders who stood before her, one by one, committed to do everything in their considerable power to make that happen.

Why did they not, with equal conviction, commit to doing everything in their power to improve the conditions for her present life?

Today, if granted a comparable moment of attention, other disabled Canadians should call upon our leaders to make good on the fundamental promises of citizenship: equal protection of the law, equal opportunity to live with dignity, and equal recognition in governance and culture.

Please hold your applause, unless of course you're celebrating human dignity in life, as well as death.

This column is part of CBC's Opinion section. For more information about this section, please read our FAQ.