Last
week, I saw a preview of Whose Life Is It
Anyway? (by Brian Clark) at the Cultch. The powerful performance is about a witty sculptor,
Ken, who became quadriplegic after a car accident. Having lost his
mobility and facing the prospect of living in an institution from there on, Ken
believes that his form of existence is undignified. He severs ties with loved ones and refuses various
life-sustaining treatments that the hospital imposes on him.
Refusal
of life-sustaining therapy is already legal in Canada. Justified by the ethical principle of respect for autonomy, patients
who are capable of making healthcare decisions can refuse medical treatment,
even if doing so would foreseeably lead to their death. In recent years, debates about the so-called right
to die focus on whether
the autonomy argument
also supports physician-assisted suicide and/or euthanasia.
For this post, I will put aside the nuanced distinctions
among various forms of assisted deaths.
My focus here is on people’s expressed desire to die allegedly because of their
impairment. Many argue that one’s desire
to die is a private matter, such that control
over one’s death is a natural extension of the right to privacy and an expression
of one’s autonomy. If people believe that their life with impairment
is unbearable, even if they are not terminally ill, they should be allowed to
end their intolerable suffering and have control
over when and how they die.
But discussions that focus on the
person’s impairment often overlook the socio-political context within which
people consider their life as not worth living. People with impairments, some of whom spend
prolonged periods in institutionalized care due to lack of home support and
other social resources, frequently lose control over their identity. They are often desexualized, infantilized, and
presumed to be globally incompetent by others.
While studies show that people with impairments often report a higher quality of life than that
projected by people without impairments, our society continues to see a life with
impairment as pitiful and tragic, and this
attitude can further marginalize people with impairment and contribute
to their despair. Even though many are passionate in fighting efforts
to legalize euthanasia or physician-assisted suicide as matters of civil
liberties, few are as fervent in promoting suicide prevention by correcting
the disabling social environment that causes or exacerbates people’s despair in
the first place.
Would
Ken have wanted to live if he could return home with support instead of having
to move to a care home? As I illustrate in a forthcoming book
chapter, various court cases show that some people with impairments who
seek assisted death would want to live if social support and
opportunity-enhancing arrangements are available, even if their physical
condition remains unchanged, suggesting that other factors can have significant
impact on one’s quality of life and desire to live.
The
founder of Realwheels Theatre, which produces
this play, maintains that the
play isn’t about the value of a life with disability, but an individual’s
right to choose. But individuals never choose within a social
vacuum. Without examining the contexts
of people’s desire to die and the social structure within which people form
such desire, we cannot ascertain the autonomy of these decisions.
Having lost a family member to
suicide and other loved ones to terminal illnesses, I am keenly aware of the unbearable
anguish that some go through, to the point that death appears to be the only feasible
escape or comfort route. My clinical ethics
work has also given me a window to the agony suffered by many who struggle to hold
on to hope. I mourn for those who live
or die in utter despair and loneliness, whatever the cause of such despondency,
and yearn for better access to social and relational resources, mental health
care, and end-of-life care. In the
context of impairments, we need to bear in mind that non-clinical concerns
regarding the loss of social significance, communicative problems, living arrangements,
quality of care, and loneliness often contribute to people’s suffering. When an individual chooses death as the only
viable way to escape an intolerable situation partly brought on by the social
environment, it seems “perverse and unfair to say that this is an expression of
self-determination or autonomy.”[i]
Perhaps Ken’s story is really about a right to live with dignity – to have one’s voice heard, to have one’s
full humanity recognized regardless of one’s level of functioning, to be able
to rely on others without feeling guilty, and to have control over one’s own
identity and living environment. Until we
all live in a world that sees life with impairment and dependency as equally
worthy and provides appropriate opportunities for people to flourish and retain
hope, even legal access to euthanasia or physician-assisted suicide won’t
guarantee dignity, in life or in death.
[i] Jerome
Bickenbach, “Disability and Life-Ending Decisions,” in Physician Assisted Suicide: Expanding the Debate, eds. Margaret
Battin, Rosamond Rhodes, and Anita Silvers (New York: Routledge, 1998), 123-132: 128.
