Recently, I was on a panel at a meeting of Liberal senators. Their open caucus initiative reaches beyond politics and invites other Canadians to share information and discussion on topics of national importance — an admirable endeavour.
The topic was end of life care choices. The first speaker was the MP whose private member’s bills in the Commons would legalize doctor-assisted dying in Canada. Three of us spoke from personal knowledge of people who have disabilities; another from the perspective of dying with dignity; another about palliative care. Personally, I believe that palliative care should not be considered an option, but as good medical practice. That it is not available to all who need it, is to our collective shame.
After almost 50 years of voluntary effort in the disability community, it is not unusual for me to be the oldest person in a room. On this occasion, most of the others were also seniors. Yet, with mandatory retirement at 75 for senators, there was still more than a decade between our ages. By the birth date of the eldest of Canada’s senators, I had completed my first year in high school.
“With our aging population, the numbers in need of end of life options will only increase,” said the invitation. I was struck by this implied link between the demand for options and aging. I had never considered needing end of life options. I grew up believing life was a precious gift that we should respect as we lived it fully but carefully until, at some time in the future (hopefully far distant), we would die. It is relatively recently that we have been hearing about options in the dying process to which many Canadians believe we are, or should be, entitled.
Conversations about how people with disabilities have died are not unknown in the disability movement. We can tell horrific real-life stories that are unbelievable to citizens unfamiliar with the realities of living with a disability in a society that tends to see such people as “other” or “them” rather than ”us.”
People with disabilities feel threatened by moves to legalize killing by the state of those who request it. They know what it is to be unwanted in an uncaring society and they know that the steps that would further threaten their lives and social image are much smaller and easier to take than most would care to admit or believe.
I have also had conversations about dying with older friends from school days in the U.K., where I was born. We all married and remained with our partners until their deaths. None of us talked about options with respect to that final reality. I don’t know any people my age or older who talk about options.
If the expectation of availability of those options is linked to aging, I found myself wondering why it had occurred to the senators, but not to me or to others of my age that I knew? What was it about that decade or so difference in our ages that had changed long-standing life and death expectations? Could it have something to do with the Second World War?
People of my age and older learned much during the war about dying, particularly dying before one’s expected time. We attended memorial services for friends, neighbours, perhaps relatives, none of whom had asked to die. Full of life when they left to serve their country, they never came home. No “options” for them.
But we also learned about sharing life. There was certainly fear and threat, but there was also a sustaining unity in the war years. People of all ages volunteered in that united effort on the home front. Guides, Scouts, Girls’ Training Corps, Cadets, all contributed. Adults too old or too young for the armed forces joined the civilian war effort — Home Guard, Air Raid Wardens, Women’s Voluntary Service — in my case, the Women’s Land Army, women who worked the farms until the men returned.
The war experience had great influence on my life and the lives of millions. It was that sense of unity and selflessness epitomized by those who will never return that helped to provide the foundations for the United Nations and for laws on fundamental human rights, the benefits of which we all now share. But other elements are creeping into that recognition of equality and mutual respect. Now we hear mostly about autonomy, the freedom to live life without external influence, the presumed right to exercise one’s will irrespective of its implications for others, even a “right” to have the state assist us in dying the way we, individually, might want to die. Deep down, I know that those are not the rights for which my friend, Jack, my occasional dance partner; Jimmy, my neighbour; Lou and countless others, gave their lives.
Audrey Cole, 86, has deep roots in Canada’s Community Living movement. The birth of her now 54-year-old son with Down’s syndrome, energized her advocacy in human rights, values and ethics and the social well-being of disadvantaged people. She shares the concern of the disability rights movement that the incessant call for assisted suicide sends a cruel but implicit message that life with disabling conditions is a life not worth living.