Don’t Underestimate Life’s Value With A Disability
I wrote an essay in college exploring the ethics of using novel DNA screening technology to determine if a fetus had Down Syndrome. As an exercise, I tried to write it from a utilitarian perspective - how does one evaluate what does the most good for the greatest number of people? Was this a revival of the discredited eugenics movement, a failure to recognize the inherent value of human life and the effects such lives have on others, or a viable option for parents with a right to know?
I wrote the essay for a bioethics course led by a professor I came to consider a friend and mentor. Since our friendship developed based on spirited discussions in a seminar, I didn’t know at the time of writing that outside of the classroom he was a devout Catholic...and father to a young daughter with Down Syndrome.
We followed up my essay with a discussion in class, and some weeks later with a dinner at my dorm, where the two of us explored the topic on an academic, theological and personal level. He presented me with studies on stroke survivors and traumatic amputees whose happiness ratings one year out from their disabilities scored higher than control groups who had not sustained such disabilities. It would appear the thoughtful practice of gratitude and consequent shift in perspective, rather than inherent physical health and functional status, can influence happiness.
Should we euthanize non-injured persons since they bring human happiness down on average, my professor asked tongue-in-cheek? Should we discount the compassion for others that persons with Down Syndrome inspire in those around them? Is there no value a community derives in caring for the proverbial “least among us?”
I came away from the discussion with a changed perspective and a lot more empathy. As it pertains to my loved one, I don’t want to unfairly discount that living in what this person might have considered a “reduced state” before surgery won’t be perceived as valuable should my loved one survive to recovery.
At my most desperate moments, I’ve wondered whether a decisive death on the operating room table would have been preferable to this sustained uncertainty, a stressor with no end in sight. Whenever this thought intrudes (and from speaking to others in similar straits, it inevitably does), it is immediately followed by shame and embarrassment for placing my emotional convenience over my loved one’s well-being.
As a physician, I realize there will be no miraculous recovery; my loved one will never achieve the level of function that was the motive for undergoing this surgery. Still, I’m ambivalent about assigning diminished value to someone else’s changed status in life.
I’d welcome your thoughts, experiences and advice.