Notes on life, love, disability and, sigh, MAiD
Dear young Steve,
As I write, it’s two weeks from Christmas and three from New Year’s. At their best these two linked celebrations sparkle with hope, grace and joy. You will soon realize that, starting from the warmth of late summer through to the gratitudes of Thanksgiving and onto the final Auld Lang Syne of the holidays, this will become your favourite stretch of the year.
This is when you will meet and woo your abiding love, Judy, and build a sumptuous marriage.
This is when you will wed, a semi-elopement that will be capped by seven wondrous days and nights of a New York City honeymoon, a place you will return to again and again.
This is when you will become, much to your amazement, a doting father to Hannah, your awesome daughter, who will delight you every day with her kick-ass smarts and intuitive thoughtfulness.
This is also when your parents, eight years apart, first Mom, then Dad, will leave this world. You will honour them by living your best life based on the examples they set, but you will mourn their loss most profoundly in this season, when the leaves spectacularly announce their looming departure as they transition from deep green to vibrant colour before falling gently to the ground.
“Count your blessings, son,” Dad will say to you over and over. And you will. So many good things will come your way—jobs, friendships, recognition, respect from peers. You will never totally understand why Dad says this so often, but you strongly suspect he is trying to instill in you a way of looking at your world that blunts the sadness, frustration, even anger that living with a significant physical disability will bring. Those are the times when, momentarily, life seems to be too much to bear. You will shed tears at these times, copious amounts, but those tears will bring relief and, eventually, strength until the next frustration trips you up.
Such is life, on occasion, with disability. Tough. Harsh. Lonely. Few will go out of their way to try to understand your circumstances or help you through them. Most will try to avoid you. Some will stare at you. Many will pity you. A few will tell you directly to your face: “Oh, I could never live like you do,” or, “If I had to live like you, I’d kill myself.”
As you creep ever closer to your 70th birthday, an age you never expected to reach given your particular impairments, there will be much talk about people with disabilities wanting to kill themselves through Canada’s Medical Assistance in Dying (MAiD) legislation.
Reading about these lived experiences of too-little love, income, food, shelter, opportunity, societal acceptance—the very necessities of life—will shake and unsettle you. You will be reminded of your own times of trauma and despair, when the many blessings you will receive will remain uncounted until the clouds of gloom slowly, achingly dissipate.
The more you learn of these troubled lives the more you will be appalled by the paucity of supports in place, provoking many with disabilities to seek solace in their own demise.
You will, in addition, be appalled that some bonehead social and healthcare workers are openly suggesting to their disabled clients or patients they apply for MAiD. You will recognize in these instances what you will come to call the tyranny of good intensions and
the most recent face of the dark forces of ableism and eugenics.
You will also be appalled at the prospect that some unscrupulous souls will try to use MAiD to “off” an inconvenient spouse or relative with a disability.
Still, you will welcome the legislation’s passage, while calling for better resources and safeguards to blunt what appalls you so lives can be saved and improved.
You will, however, grow up to embrace the philosophy of Independent Living and, after much thought and consideration, you will come to believe that Independent Living also means you can and should make your own decisions, if possible, about how and when you will die. MAiD does have a place.
An ICU doctor who will help save your life one day will tell you: “We think you still have a lot of living to do.” He will be correct. You will and, despite the inevitable ups and downs of everyday disabled life, you will forever be grateful to him and the now troubled healthcare system he valiantly works within.
Stephen Trumper serves on the board of the Canadian Abilities Foundation. He is an independent writer, editor, and teacher.
