Remembering Gloria TaylorBy Chelsea Temple Jones
A coffee-stained email printed out three years ago hangs over my desk. Gloria Taylor, the first person in Canada ever allowed to choose physician-assisted death, wrote to me after I interviewed her for a 2012 Observer story
. “You are my style of writer,” she wrote, a compliment that stirs up unsteady, anticipatory grief.
“Anticipatory grief” was the term Taylor used to describe the feeling that kept her up until 4 a.m. some nights — anger and turmoil that brought her closer to God. Taylor, diagnosed with amyotrophic lateral sclerosis (ALS) a year before becoming a plaintiff in the 2011 British Columbia right-to-die case, had forgotten I was coming to interview her on that mid-summer Okanagan day. She had to phone her lawyer before we talked. “I thought I emailed her. I probably did, I don’t know,” Taylor said, hanging up the phone. The lawyer asked us to avoid discussing the case. Dodging the argument for death meant talking about life. Tucked into her mobile home’s kitchen, Taylor told me about being a Sunday school kid, a competitive motorcyclist, a foster parent and an employee at many jobs including a group home for disabled adults. She laughed a lot and spoke about her Russian heritage, her tattoos and her new wheelchair.
Taylor also talked about inaccessibility and isolation. Cabbing to church and around town was becoming expensive. She had visitors, but few affordable transportation options. Eating and dressing on her own were increasingly frustrating. In rereading the interview transcript three years on, I realize that Taylor’s swelling anticipatory grief intersected with her new identity as a disabled woman whose social desirability was quietly being brought into question.
Taylor fought her case on the premise that all Canadians should have
the choice of assisted dying. But choice is contextual, and the choices
we make can shift based on how vulnerable we feel. Shame, loneliness
and anxiety about whether the support will be there as our bodies grow
more disabled — all are factors that affect our decision-making. I
re-read Taylor’s account as less hopeful than I initially realized. She
was fearful that her tight network of supporters — including her church
community — would irreparably loosen.
The Supreme Court’s
confirmation that Canadians have the constitutional right to choose
physician-assisted dying that followed Taylor’s death in 2013 has
launched me, and other members of the disability community I work with
as a researcher and ally, into a particular trajectory of anticipatory
grief. Assisted dying is presented to us as a choice. But the proposed
Bill C-14, the act to decriminalize medically assisted dying, stipulates
that the choice is only available to competent adults. Others, like
intellectually disabled people or people with psychiatric disabilities,
can’t access this choice.
But even “competent” adults are at
risk. They may choose to end their lives for fear of what lies ahead.
The very real threats of institutionalization that disabled people face
regularly — time spent on psychiatric wards, in group homes, in nursing
homes — loom large. Their choices may be laced with anxiety about being
absorbed into medical systems that too often frame disabled lives as
I don’t begrudge Taylor’s pioneering advocacy. I
remember her fondly. Yet, I realize that as Canadians, we are putting a
lot of time and consideration into crafting laws that will support
people in hastening death. Yet, there is room for more thought about how
disability is received in our communities and what this means for our
end-of-life decisions. Instead of falling into a trap where we equate
disability with suffering, we can focus our energy on radically
supporting and desiring disabled people’s lives as we navigate the
outcomes of vulnerability and grapple with how we collectively choose to
care with, and for, each other. Chelsea Temple Jones teaches in the School of Disability Studies at Ryerson University.