“Pandemic ethics.” This might not have been a phrase you expected to be familiar with only a few short months ago. As with lifeboats and “lifeboat ethics,” pandemics are not situations we expect to find ourselves in. Now, however, it’s popping up in news stories and articles from around the world. Health care systems are grappling with how best to serve the overwhelming numbers of people needing intensive care due to COVID-19.
We hear stories about elderly people being passed over while in hospital for those with more “potential years of life,” of people willingly giving up their respirators, and of people choosing to forgo the hospital entirely rather than fight for care while separated from their loved ones.
“Ableism” is another term that may be unfamiliar to many. But as it links to pandemic ethics we are seeing it pop up in our news feeds as well. Three colleagues from Christian Horizons, a non-profit agency that strives to nurture communities where everybody belongs, share their perspectives on disability, faith, and ethics in the era of COVID-19.
Chantal is a woman from Waterloo, Ontario, who has cerebral palsy. She is a Registered Social Worker as well as a chaplain, with Masters degrees in social work and in divinity. Under normal circumstances, she leads a very active life which includes professional responsibilities, being an active member of her faith community, and maintaining volunteer commitments in her neighbourhood.
Chantal feels it is important she emphasize her educational achievements and societal contributions. She says “ever since Canada’s Medical Assistance in Dying legislation came into effect, I have felt a need to prove that my life is just as valuable as a Canadian who does not have a disability, and convince others that regardless of their preconceived notions of disability and quality of life, my quality of life is very high.”
It has been troubling for Chantal to read various news stories about pandemic ethics and proposed or current triage protocols. Often, these stories and procedures discriminate against people with disabilities. For Chantal, they confirm fears that she was previously only subconsciously aware of.
Chantal believes that so-called pandemic ethics and fears of scarcity have the potential to further devalue the lives of Canadians with disabilities and individuals with disabilities around the world. While in some ways the COVID-19 pandemic unifies the disability community around the globe, in other ways it legitimates archaic values and hierarchies.
Chantal says, “The value of someone’s life is not dependent on whether they have a disability or their general life expectancy. It is shocking to me that there are people in this world, medical ethicists in fact, who need to be convinced of this. Withholding potentially life-saving treatment from people with disabilities is discriminatory and wrong.
“In the event that I contract COVID-19, if I am denied lifesaving measures on the basis of anything related to my disability,” Chantal says, “this will represent a gross societal injustice. My consolation will be that I begin to enjoy eternity with Jesus earlier than I had hoped. As a Christian, at this point I will continue praying that I, my loved ones, and all those who care for me stay healthy and safe. I will also pray for medical ethicists to have godly wisdom and for protection of front-line health care workers.”
Jasmine is a wife and mother who has a neuromuscular disease that impacts her breathing on a daily basis. She approaches pandemic ethics from a different point of view, also rooted in Christian faith. She is aware that if she were to get to the point of needing a ventilator it would likely take her longer than the average person to begin breathing independently again. “In the time that it would take to save me, several others may die so I would expect, and support, the decision to pass me over.”
She continues: “This is not because I think my life as a disabled and chronically ill person is worth less than someone without disability. If we believe that all lives are equal, then decisions should be made to save the greatest number of people possible.”
When news of the novel coronavirus began to break, Jasmine was surprisingly calm. “Illness isn’t so scary to me. It is a constant companion and I expect it. I’ve been sick, I am sick, I will be sick. However, when I started hearing about ventilator shortages and collapsing health care systems, that frightened me. I have great confidence in the Canadian health care system so the idea of not having that to rely on makes me feel vulnerable”.
Jasmine explains that for her, vulnerability is not a problem. She views vulnerability as merely part of what it means to be human. She has been face-to-face with her mortality before and has gained insight from that experience.