(Side note: since writing this piece, an article has come out stating Trump’s administration has said people with disabilities must not be denied medical treatment based on their disability. This is great news. But the point remains. So please do read on! https://thehill.com/policy/healthcare/489982-trump-administration-says-people-with-disabilities-must-not-be-denied
Let’s look at a COVID-19 hypothetical:
Two 11-year-old girls enter an emergency department at the same time. Both girls are struggling to breathe and need immediate care in the form of a ventilator. There is one ventilator and the triage doctors must now decide who gets it. Girl ‘A’ appears healthy with a history of health. Girl ‘B’ has a medical history that includes a congenital heart defect and pulmonary hypertension, both of which have been totally resolved and she’s been totally healthy since she was two years old. She also has Down syndrome. Whose life will the doctors choose to save?
The articles circulating the internet about the very real idea that as the Coronavirus spreads doctors may have to decide who will be saved and who won’t, have created a tension and a fear amongst many of those who may find themselves in the “won’t save” column. Among those are people with intellectual and/or physical disabilities, which could end up including my children with Down syndrome.
This idea that the life of a person without a disability is more valuable than the life of a person with a disability is nothing new. Take the Down syndrome population for example: the majority of babies with Down syndrome who receive an in-utero diagnosis are aborted solely because of the diagnosis. Or said differently, if they did not have Down syndrome, if there was not a disability, they would be viewed as worthy of life, (here kid, have a ventilator). And once born, people with Down syndrome and other disabilities are living in a world where this attitude and reaction to an in-utero diagnosis is accepted. Their disability is viewed as something to fix, tolerate or avoid, often being seen as a “problem” with “solutions” in place to help make people with disabilities more like people without disabilities.
Over the past week I’ve read the articles about medical plans in place for if/when this virus overwhelms our medical system. These protocols will guide doctors who have to make the horrific choice about whose life is worthy of saving. And because the virus has been kind to kids, it is unlikely the hypothetical which we started with here will come to fruition. But my friends with disabilities may not be so lucky. People I love who fit into a category that has been deemed “less worthy of life” because of a diagnosis may lose their lives to someone who does not have a disability.
Before I continue, two pieces of information I want to make sure are heard loud and clear. First, I am so very, very, very thankful to the medical professionals on the front lines of this pandemic. I know they are risking their lives and if/when a decision is made to save the life of a person without a disability vs. a person with a disability, I know this is a not a personal decision made by doctors. I can’t imagine having the pressure and responsibility to make a decision like this. I only have sympathy for the doctors who have to make that call. Doctors, I love you all! Second, I’m in the camp of all people are worthy of life and because of my proximity to people with disabilities I have been given the gift of a better understanding of what it truly means to be human and the worth of a life starts and stops with one’s humanity.
As I read the articles written by people with disabilities expressing this new level of fear if they were to get the virus, as well as major media outlets discussing triage protocols, I want to point out that the world questioned my daughter’s worth and the worth of the disabled long before COVID 19. The medical triage protocol we are seeing circulate which is deciding the life of people with disabilities is less than those without, is simply a magnifying glass on a sentiment that has been alive and well for decades, centuries, since the beginning of time.
And while I can’t imagine anyone reading this would agree the life of my daughter with Down syndrome is worth less than the life of an 11-year-old without a disability, during this time may we all take pause and try to better understand why and how we measure the value of a life. As we remain in our homes distant from others for an indefinite amount of time, may we be intentional in creating proximity via social media, books, movies, etc. to those who we may place in the “less worthy” column. And by doing so may we all broaden our definition of who is worthy of life and what it truly means to be human. It is an opportunity as well as a responsibility.
Stay safe, stay home, we are with you in this!