Born with cerebral palsy (CP), Dr. Heidi Janz’s movement and speech have been severely limited every day of her life. She spent much time growing up in a hospital and requires a motorized wheelchair to move. Her CP impedes her ability to form words.

Instilled with an indomitable spirit that she credits to her faith in Jesus Christ, Janz, a University of Alberta disability ethicist, has found a way for her impassioned, impactful and thought-provoking voice to be heard throughout the years. The associate adjunct professor with the U of A’s John Dossetor Health Ethics Centre has used it in two striking ways in recent weeks.

On April 21, she beamed in front of a crowd at Our Lady of Perpetual Help Church in Sherwood Park, Alta. Her prepared written testimonial remarks were read aloud during the Archdiocese of Edmonton's “Is Life Always Worth Living: Responding to the Rise of MAID in our society” event hosted by culture of life advocate Amanda Achtman.

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“While the physicians tending to me were clear that my diagnosis was catastrophic, they seemed less than clear about what my diagnosis, and thus my prognosis, actually was,” stated Janz through a translator. “The doctors told my parents that I was severely brain-damaged — that I probably wouldn’t live very long.

“Their estimates kept changing from three hours, three days, to three months and then three years, and even if I survived, I wouldn’t walk, talk or think, and they recommended that the best thing my parents could do is put me in an institution and forget they ever had me.”

Thankfully, that deplorable notion was not considered for a second. She was blessed with a mother, now passed, of deep faith and formidable will.

Janz critiqued how lives like hers that are dependent on others for basic needs are characterized as “a life without dignity, and thus a fate worse than death.”

Just nine days later, on April 30, Janz challenged ableism and “tyranny of autonomy,” while also advocating the wholesale embrace of disability theology in her perspectives paper, For Such a Time as This: Articulating a Christian Ethic of Disability in the Context of MAiD.

Commenting on the timing of this paper, Janz, through a communication facilitator, shared with The Catholic Register that “given the ongoing push to expand MAiD to more and more groups of people, I thought it was important to share my research and experience about how we got to this point.”

Her paper declares that the case of Robert Latimer, convicted of second-degree murder in the death of his 12-year-old daughter Tracy Lynn in 1993, was a key moment in the journey towards euthanasia acceptance.

Akin to Janz, Tracy also experienced serious physical and intellectual disabilities with cerebral palsy. It was very disturbing to her how Canadian media sympathetically portrayed her father's actions as a mercy killing and how some Christians she knew shared sentiments of not condemning Latimer because “we can’t fully know or understand how hard it was for him to look after her or how hard it was for him, as a father, to watch his daughter suffer.”

“I could not understand how people in general, and Christians in particular, could unquestioningly accept the justification and rationale of someone who murdered his own daughter,” she wrote. “It seemed to me that the fact that Robert Latimer was non-disabled, and a father, meant that the majority of Canadians, Christian or not, found it much easier to identify with Robert than with Tracy. I thus realized the likelihood that these same comments would be made if any of my friends with disabilities — or even if I, myself — were killed by a parent."

Over three decades since Tracy’s life was extinguished, Janz lamented how government and court-approved medical-killing procedures have become so normalized by the terminology. Assisted Suicide and Euthanasia has given way to MAiD, medical assistance in dying, because the latter purportedly alters the optics of doctors killing patients into “legalized, compassionate end-of-life care.”

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In her critique of ableism, prejudicial beliefs that a person is incomplete if they cannot perform typical human abilities, Janz aimed at how adopting ableist views has led to the dangerous embrace of eugenics logic — the belief that the world would be better off if disability were eliminated.

Janz alludes to the “tyranny of autonomy, a phrase introduced by British medical law and ethics academic and author Charles Foster in 2009 to critique how individual choice towers above moral ethics, patient wellbeing and any other important bioethical consideration.

"The desire for autonomy is what got humankind into trouble at the very beginning,” said Janz. “We just don't seem to learn. What's very troubling is Christians ought to know better.”

She outlined the peril of ableism intersecting with the “tyranny of autonomy” in her paper.

“This intersection of ableism with the tyranny of autonomy conflates systemic ableism with the mere existence of disabilities,” Janz articulated. “Thus, the tyranny of autonomy obfuscates the reality that ableism routinely constrains the autonomy of disabled people by limiting or denying their access to financial, social and disability-related supports needed for them to flourish within the community. The social vulnerability caused by material deprivations is thus framed as a consequence of disability rather than a consequence of an ableist system.”

Her solution for redemption at a time like this lies in espousing disability theology. In her words, the principles of this belief system are:

· All people are born in God’s image and thus have “innate worth as God’s image-bearers.”

· God creates people with disabilities to accomplish His plans.

· Disabled Christians also share in the eschatological vision promising “the end of all exclusion and suffering, pointing toward a future where all are included in God’s redemptive plan, a future that begins now within the Church.”

Janz said disability theology can also be practised with deeds.

“I think the Christian community really needs to step up and back, in practical ways, disabled people in their community, like (providing) food kitchens or helping with errands. It's about developing relationships and finding out what people's needs are.”

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A gift that comes with building relationships with people experiencing disabilities is getting a front row view to the remarkable way they have ignored the people who wrote them off — Janz’ early doctors, for one — to live life to the fullest.

Read For Such a Time as This: Articulating a Christian Ethic of Disability in the Context of MAiD at cardus.ca.