This summer, I have the privilege of interning remotely with two wonderful disability rights organizations, the Council of Canadians with Disabilities, and with Citizens with Disabilities – Ontario. Working remotely was not an accommodation since both organizations are somewhat decentralized, but it enabled me to be part of the passing of my beloved father-in-law. While illness and death are always occasions for reflection, having this experience while otherwise focusing on disability rights raised questions about assisted dying with particular intensity.
A banal strategy is sometimes used to motivate concern for the rights of persons with disabilities. It says that when most of us get old, our bodies will function less well to the point that we might consider ourselves “disabled”, therefore the rights of persons with disabilities should concern us because we are likely to be affected one day. This is not what this blog is about.
If anything, my experiences this summer reinforced my belief in the emancipatory potential of the disability rights movement. The ableism that marginalizes persons with disabilities also marginalizes, for all of us, many parts of ourselves and of our lives which are enormous sources of meaning: our potential to give and receive help, our relationships with others, and our fundamental, ineluctable mutual dependence. Ableism cheats us all of the recognition that these are not distractions or detours from what makes life valuable; instead, it postulates that the only life worth living is one of self-sufficiency and productivity.
The expansion of medical assistance in dying (MAID) is a concern among disability rights activists in part for this reason, that it may reinforce the idea that a non-self-sufficient life is not worth living. I saw this fear of “being a burden” with my father-in-law in the past couple of the years. He suffered from chronic illness since his late-70s and would makes “jokes” about Inuit senicide. My own father, who is around the same age, has made similar comments, reflecting anxieties cloaked in ableist bravado. Having myself experienced chronic illness throughout my adult life, I have come to feel so lucky to be free of these fears of an infirm future.
My father-in-law’s ambivalence about life with impaired health culminated in his decision to stop a treatment that he needed to continue to live. There was no terminal illness, and it was not MAID – in fact it was in a US state where MAID is not legal – but there was medical cooperation. The choice to die was his initiative, and there was no question that it was what he wanted.
But what about the context of a decision like this? In my father-in-law’s case, he did not lack resources nor family who could assist him. But what about persons with disabilities in Canada right now opting for MAID, similarly with chronic but not terminal conditions, where a significant part of their suffering is due to poverty? Inasmuch as the poverty which disproportionately affects persons with disabilities is a consequence of our governments’ decisions, it is we voters who determine this aspect of the context of the choice of MAID. But what, also, of the pervasive and often internalized ableism that agrees that a life with disability is not worth continuing, eroding mental health and the will to live? I fear that this was part of the context of my father-in-law’s choice.
A central dictum in disability rights insists “nothing about us without us”. For so long, the rights of persons with disabilities have been decided at the policy level without the voices of the people affected. A corresponding concern at the individual level is substitute decision-making for persons with disabilities (which is being studied by my brilliant McGill colleague in his DCL). It is so important to facilitate the autonomy of persons with disabilities as much as possible and there is some debate as to whether laws in Canada conform with our obligations in the area under the UN Declaration on the Rights of Persons with Disabilities. In my father-in-law’s case, I believe his family’s deference to his will was to their credit. And the speed with which he passed after stopping treatment testified that he knew his body was at its limit.
The choice to pursue assisted death must be taken seriously but the context of that decision must be taken seriously too. The concern about MAID is that the choice of a death with dignity may not be a real choice if there is no option of a life with dignity for persons with disabilities. Beyond the availability of financial supports enabling persons with disabilities to live with minimal suffering, the dismantling of ableism stands to create the context for a life with dignity because it affirms the variety of ways a life may be worth living.