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By Catherine Frazee
What are we really applauding?
A powerful first-person narrative marked an important moment in the last French-language leaders’ debate of the federal election — and a rare mention of disability in the campaign. Now it’s time for the newly elected federal government to employ a meaningful ‘disability lens’ — a phrase the Liberals themselves promoted during the election period — on any changes to medical aid in dying legislation.
Lise Pigeon was one of a handful of ordinary Canadians granted the opportunity to ask a question of our six federal party leaders assembled for the debate. She began her moment in the national spotlight with a self-introduction calibrated to make her listeners squirm. “I’m sixty-three 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?”
The question was timely. Back in September, a Quebec Superior Court justice invalidated parts of the federal and provincial laws on medically assisted dying, finding the Criminal Code requirement that death be “reasonably foreseeable” to qualify for medical assistance in dying “infringes life, liberty and security of person” as guaranteed by the Charter.
Six answers followed, each a careful variant of yes. Along with the promise to amend federal law on medical assistance in dying, heartfelt expressions of sympathy, 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?
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 Lise 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 this 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 no talk of solidarity, of recognition, of reconciliation with Canada’s Disabled People, who have suffered from the callous neglect of a nation indifferent to our needs and contributions?
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?
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 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.
Lisez en français
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This post was previously published on quoimedia.com and is republished here under a Creative Commons license.
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