I have just returned from a whirlwind trip to Europe, partly to research settings for my new historical espionage novel. While I’ve been away, the #icebucketchallenge hit North America.
What has been fascinating to me about this social media phenom is two elements. First, the fact that everyone wants to do the challenge (perhaps because the world news has been so terrible, and this is a positive act that we can control). Secondly, that ALS is suddenly becoming a disease on everyone’s radar.
ALS came on my radar years ago, when a former classmate in my Master’s of Public Administration program lost her husband to the disease. I remember the pain in my friend’s voice as she told me how terribly her husband suffered at the end of his life. ALS patients eventually lose the ability to breathe, swallow, move, talk, or eat, yet mainly retain cognitive function.
In 1993, this fate spurred Sue Rodriguez, a 42-year old mother of a young child, to challenge the law against assisted suicide. She was faced with a difficult choice: to live her life for as long possible to enjoy the precious, fleeting years with her young child — but then die at the hands of a merciless disease. Or end her life by her own hand before she was robbed of the ability to do so – but deny her child of months or years of critical growing years with his mother.
Unlike suicide in Canada, assisted suicide is a crime, punishable to a maximum of fourteen years incarceration under the Criminal Code of Canada. Ms. Rodriguez challenged the law. Her question: “Who owns my life?”
Her case was heard by the Supreme Court of Canada, which accelerated the process in recognition of the speed at which this disease attacked the patient.
The SCC held 5-4 against her. The majority decision, penned by Mr. Justice Sopinka, held that:
No consensus can be found in favour of the decriminalization of assisted suicide. To the extent that there is a consensus, it is that human life must be respected. This consensus finds legal expression in our legal system which prohibits capital punishment. The prohibition against assisted suicide serves a similar purpose. Given the concerns about abuse and the great difficulty in creating appropriate safeguards, the blanket prohibition on assisted suicide is not arbitrary or unfair.
In contrast, Madame Justice McLachlin, in her dissent, supported the autonomy of the person:
Here, Parliament has put into force a legislative scheme which makes suicide lawful but assisted suicide unlawful. The effect of this distinction is to deny to some people the choice of ending their lives solely because they are physically unable to do so, preventing them from exercising the autonomy over their bodies available to other people. The denial of the ability to end their life is arbitrary and hence amounts to a limit on the right to security of the person which does not comport with the principles of fundamental justice.
In 1994, Ms. Rodriguez ended her life with the assistance of an anonymous physician. Neither the physician, nor the MP who attended her death, were charged.
When I wrote TATTOOED (MIRA Books, June 2012), assisted suicide became the defining case for Kate Lange, the protagonist in my legal thriller series. Kate is asked by Frances Sloane, a woman dying of ALS, to re-open the assisted suicide debate. Not only is the case difficult, but Frances Sloane is the mother of Kate’s high school nemesis, Kenzie Sloane. Kate wants nothing to do with the case. She advises Francis to seek a professional lobbyist. But Frances is not willing to go without a fight:
“I’ve chosen you.” Frances’ gaze became pleading.
A weight formed in Kate’s chest. “Why?”
“You fought the Body Butcher so you wouldn’t die a horrible death.”
The foyer had become very quiet. The back of Kate’s neck prickled. She was certain the receptionist listened intently. She was also certain that Melissa would be looking anywhere but at them.
You’ve got this all mixed up, Frances. It was pure survival instinct, not a well thought out plan about my means of departing this earth. Kate rubbed her arms. “I fought him because I wanted to live, Frances.”
“But you didn’t want to die like that, did you?”
Kate saw exactly where Frances was heading with her question. But she couldn’t lie to her. “No.” The desire to live had fuelled her fight to the death with Halifax’s first serial killer. But Frances was right. Fear underlay her desperate fight with the Body Butcher. Fear of dying in the manner that had earned the killer his moniker.
To research Francis Sloane’s character, I read numerous blogs and articles written by ALS patients and their family members. Due to the progression of the disease, many of them ended prematurely. But the hope and the despair were heart-wrenching. The disease was terminal. There was no known cure. And some people felt that the quick progression of the disease prevented public awareness and limited charitable donations. People died before they could actively campaign for research donations. In addition, some ALS patients voiced their discomfort that the disease had become a touch point for assisted suicide. Not all ALS patients wanted to end their lives in that manner.
However, in 2011, another ALS sufferer, Gloria Taylor, joined a challenge launched by the BC Civil Liberties Association to overturn the criminal code prohibition. The BC Supreme Court ruled against Parliament and gave the government a year to rewrite the law. It granted Gloria Taylor an exemption against the current prohibition so she could seek a physician-assisted death. But she died of natural causes before exercising that right. The BC Court of Appeal overturned the BCSC decision, and the BC Civil Liberties Association filed leave for appeal to the Supreme Court of Canada. The SCC will hear the case in October 2014.
The title for this blog is inspired by Yeats’s quote: “Education is not filling a bucket, but lighting a fire.” The #icebucketchallenge has filled millions of buckets as a means to light the fire for educating people about ALS. And it has raised millions of dollars for ALS research in a few short weeks.
Perhaps the much-needed research funds will create a treatment for ALS – and the disease will no longer be the touch point for assisted suicide. Regardless, I thank Sue Rodriguez and Gloria Taylor for using the disease as a means to light a fire in our nation’s consciousness about personal autonomy, and the right to die on our own terms.
I am struck by the synchronicity of choosing to dump a bucket of ice cold water over one’s body as a fitting manifestation of Sue Rodriguez’ immortal question: “Who owns this body?” I cannot wait to hear the Supreme Court of Canada’s answer.
What do you think of the #icebucketchallenge? Or of the difficult question of assisted suicide?