Addressing Suffering and the Loss of Ability to Communicate

Detailed descriptions of the suffering that patients have experienced and anticipate experiencing are a central feature of arguments in favour of expanding eligibility criteria. In particular, while many listed descriptions of their present situation, an even greater emphasis was placed on the anguish caused by foreseeing a steady decline in the patient’s condition. In this sense, it is the future suffering that this discourse holds to the light. Arguing that this anticipation exacerbated their struggles, plaintiffs and advocates sought to show how granting the right to MAiD would improve the end of life experiences of those excluded by the

restrictions of C-14. With the understanding that most disabled and ill people face a biopolitical devaluation of their lives and futures under the hegemony of an ableist society, how should we understand Lamb’s demands? Does the demand for the right to curtail future suffering using MAiD threaten vulnerable disabled people when, as Kafer argues, “disabled people are continually being written out of the future” to begin with? In this section I explore the relationship between anticipated suffering and the ongoing lived experiences of people with illnesses and disabilities.

Arguments about expanding MAiD paradoxically point to medicine as both the

perpetrator of extending suffering and the relief of it. Karsoho et al.’s study of MAiD’s legal and expert discourse during the Carter case found that “proponents see curative medicine as

complicit in the production of suffering at the end of life.”356 _{In the language used by those} discussing suffering during medicalized end-of-life care, the medicalization of dying, and more specifically curative efforts are seen as the cause of extended suffering. In some cases, this suffering is the result of extended interventions that aim to prolong life, while in others even palliative care aimed at improving the quality of dying without intervention, such as pain medication and antidepressants, were perceived as causing increased suffering for patients at the end of their lives.

When Quebec requested clarification of the C-14 criteria, health minister Gaétan Barrette called suffering the “common denominator”357 _{in all of the problems surrounding the} laws. The BCCLA pointed out that waiting out the slow process of legal change has proved impossible for some experiencing unbearable suffering.

We do not want sick and suffering Canadians to have to endure another incredibly long wait. We know from Carter that some people simply won't be able to wait. Some will die in agony. Some will be forced to live in agony. And so we're asking the government to not put any delays in the way.358

The narrative of the Lamb court challenge relies heavily on positioning the denial of MAiD as perpetrating tormenting conditions for patients. Having been denied MAiD initially, they argued, Moro “suffered unbearably throughout the summer”359 _{until her condition was}

reassessed and she was granted MAiD. Lamb’s testimony explains how with each new symptom

356 _{Karsoho et al., “Suffering and Medicalization at the End of Life,” 189.}

357 _{Thanh Ha, “Quebec Seeks Court Clarification of Federal Rule on ‘reasonably Foreseeable’} Death.”

358 _{CTV Television, Inc., “Challenging Bill C-14.”}

that results from her deteriorating condition, such as the “excruciating headaches”360 _{that she} experiences as a result of breathing problems throughout the night, her living conditions become less bearable.

In some cases, emphasizing the small daily pleasures that Lamb still enjoys enabled her to express frustration in trying to imagine life without them. “Julia may lose the use of her hands,” the court challenge details, “She fears losing the ability to drive her wheelchair and write and type because she loves to express herself through writing. She also loves to use illustration and drawing programs on her computer.”361 _{Talking about her communication} habits, and the importance of her daily routines enables Lamb to frame her experience outside the curative frames of medical reason.

I know that potentially, given the nature of my disease, it is progressive, so there may come a time where I could be grievously ill and suffering. Things like not being able to breathe properly and communicate, not being able to write, not being able to use my hands.362

Lamb’s claim is for her right to having a future on her own terms, even if that future includes accepting death. This is a radical claim because it also demands that she be granted more self- determination through enacting her right to a life without fear of future suffering now. Kafer’s approach demonstrates the inextricability of disabled, crip futures and presents. In offering “a politics of crip futurity, an insistence on thinking these imagined futures—and hence, these

360 _{British Columbia Civil Liberties Association.} 361 _{British Columbia Civil Liberties Association, 6.} 362 _{Ireland, “‘I Feel Quite Abandoned.’”}

lived presents—differently”363 _{she insists on modes of futurity that improve the lives of} disabled people today. Given Lamb and Moro’s explicit claims that MAiD represents not only the elimination of future suffering but would (or could have) also improve the conditions of their present lives, we should consider the possibility that MAiD may signify for some not a threat to vulnerable or disabled people, but, so long as it does not enact an erasure of disability, may also be a means of empowering those whose present conditions are shaped by the

anticipation of irreversible decline.