“Nothing about us without us”

Get our words out of your mouth!

Rumour has it that the head of Dying with Dignity, Helen Long, invoked an axiom of the disability rights movement in advocating to expand eligibility for euthanasia to people whose requests arise only from a mental illness. Allegedly Ms. Long, who does not identify as disabled, criticized the parliamentary committee for not seeking input from people with mental illness who want government help to ensure fulfillment of their suicidal wishes. Specifically she said the committee had not respected the principle of “Nothing about us, without us.”

Say what?

Assuming Ms. Long doesn’t have the lived experience of disability, one would think that, as a woman living in a culture of sexualized violence, she might be able to make the solidarity connection in a more genuine way than by simply claiming it. I get it that the issues raised by euthanasia of people with psychiatric disabilities may be too specialized for folks who are not disabled survivors of childhood trauma and the mental illness that often flows from it. It probably doesn’t occur to Ms. Long that allowing MAiD for people with mental illness undermines the public policy of Suicide prevention, by allowing (often ableist) mental health professionals to judge not just the remediability of a mental illness, but also the person’s quality of life and human worth. And maybe it doesn’t occur to Dying with Dignity that inappropriate or inadequate mental health care means that people with psychiatric disabilities are requesting MAiD because they haven’t gotten the help they need, and are subject to stresses like homelessness, addiction (from attempts at self-medication), and stigmatization.

If Ms. Long really cared about disabled people, she would know that, while some disabled individuals support assisted dying, disability organizations that advocate for equality, acceptance and accessibility oppose medical killing. ADAPT and Not Dead Yet have opposed medical killing since the mid 1980s. The Council of Canadians with Disabilities took its position against legalized medical killing in 1996, at the height of public support for Robert Latimer, who murdered his daughter Tracy in 1993. Surely Ms. Long knows that disability advocates recognize and object to the belief that disabled people are (supposed to be) better off dead, and the growing popularity of assisted dying … as promoted by Dying with Dignity. She would also know that disability advocates are aware that the option to “choose” state-provided euthanasia is fast becoming a duty to die.

If she knew the first thing about ableism, Ms. Long would know that MAiD discriminates against disabled people by definition; disability is among the eligibility criteria enumerated in the definition of a grievous and irremediable medical condition. She would also know that MAiD was provided to many non-terminal disabled people even before the 2019 Truchon decision and the 2021 adoption of Bill C-7, which created “track 2” eligibility for people whose deaths were not “reasonably foreseeable.” Even if Ms. Long didn’t have the advantage of the lived experience of disability discrimination to guide her in evaluating Bill C-14, and its early implementation, anyone who claimed the solidarity of “nothing about us, without us” should have noticed what’s happened in the ten years since legalization; the failure to improve access to palliative care, the reports of same-day euthanasia and MAiD requests linked to “external pressure” (poverty, inadequate and inaccessible housing, and treatment denials) the 100,000 euthanasia deaths and the transformation of an “exceptional” measure to an “expected” response.

When people’s livelihood and self-image depends on not understanding something, they probably won’t understand it. Apparently, Ms. Long’s personal, pecuniary and political interests depend on her not knowing that it is very uncool to appropriate a disability rights principle in advocating a position the disability rights movement strongly opposes.

So please, get our words out of your (nasty) mouth.