Dear Senators,

I listened to the hearings on Monday February 1st with great interest. I am disabled and chronically ill. I am a white cis-gendered woman in my 30s. I was raised in a middle class family. I am not incarcerated. It’s important to position myself because although I live with great deal of precarity, I do not contend with the added layers of that Black, Brown, Indigenous and other negatively racialized disabled persons face. Nor do I experience the and violence that trans and non-binary people with do. I also have the privilege of not (yet) having to rely on the enforced poverty that is provincial social assistance.

It is a travesty that we have not heard from more multiply-marginalized people with disabilities given that C-7 singles out disabled people. Your decisions about Bill C-7 need to be informed by those who experience the greatest degree of inequity in our society. As Ms. Sara Jama of the Justice Network of Ontario testified on Monday, poor and BIPOC people with disabilities face the greatest harm in our systems and can not help but be further harmed by a special track to early death for disabled people. Racialized and Indigenous people are disproportionately represented in the disabled population. Disabled people are also disproportionately unemployed, unhoused, and poor. Your consideration of this bill must foreground an intersectional analysis and you need to take seriously the lived experiences of poor, disabled, and radicalized people with disabilities. Although disaggregated data has its place, we don’t need data to know the effects that MAID is already having and that will only increase should Bill C-7 pass. The lived experience of disabled people provides ample evidence regarding the impacts of this legislation.

Racism and are inextricably linked. I am grateful for the Disability Justice movement for foregrounding this. Attorney Talila A. Lewis’ working definition of ableism, (which has been informed by Dustin Gibson and other racialized peoples) is as follows: A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, , , colonialism, imperialism and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion and/or their ability to satisfactorily [re]produce, excel and "behave." You do not have to be disabled to experience ableism.

Ableism is enmeshed with . It is deeply rooted in our society and shapes all of our lives. I would argue that ableism is usually invisible to and unquestioned by people who are deemed valuable by its logic, and though we are all hurt by this system of oppression, ableism most negatively impacts those bodyminds that do not conform to a narrow acceptable “norm”—especially those that are not deemed productive under capitalism, and who cannot gain status in other ways. Why have more disabled people, especially those facing multiple , not been meaningfully consulted? Again, your consideration of this legislation needs to prioritize the lived experiences of poor, disabled, and radicalized people with disabilities.

The basic premises of the special track to early death—that disability creates irremediable suffering and that we should prioritize freedom of choice—is not only ableist but assumes that a person has exhausted other options available to them. Given that disabled people experience disproportionate rates of poverty and are not afforded the dignity of appropriate home care, there is a dearth of supports for those of us who do not have the privilege of physical and financial support from family. Last night I listened to a panel discussion that included an anonymous applicant to MAID who was candid that their motivation for seeking death was a lack of resources—specifically not enough money under social assistance for the basic necessities of rent, food, and medicines—and that they knew how to answer the physician’s questions in a way that would allow them to receive MAID. We are losing and have already lost disabled kin under Bill C-7—disabled kin who made it publicly known that they wanted to live but sought MAID because denied access to dignified care. Even given their very public statements they found practitioners who were willing to perform a procedure that ended their lives. Just last week it was reported that a man in Hamilton, Ontario was able to find practitioners who were comfortable ending his life as he lay in his own urine and feces—deplorable conditions he experienced for weeks and that his family says informed his decision to seek MAID. People have already been overtly pressured by doctors to choose MAID. How is any of this okay? Why is the government comfortable expanding MAID given how it is already operating? Why wasn’t the Truchon decision appealed? Why put forward this Bill without performing the detailed review that was scheduled for last summer?

It is regrettable, to say the least, that Minister David Lametti and others on the committee discredit the wisdom of disabled people who are sounding the alarms about this legislation by minimizing their concerns and their lived experience. Disabled people should be treated like the true experts that they are. Their concerns are not “perceived fears,” but fully grounded in reality, in what is already happening with how MAID, medical ableism and medical , audism, saneism, classism, and are already functioning. These systems cause ongoing trauma, discrimination, and harm. These systems have already successfully devalued and ended disabled lives. These systems have already resulted in the loss of disabled kin who would have preferred to live with dignity—an option they were denied. I add my voice to those who are calling for justice, for dignity, for equity, for our government to see this legislation as the threat that it is.

During this pandemic (as in the discussions of Bill C-7) the lack of respect for disabled lives has been on full, flagrant display. Disability organizations have raised alarm bells about discriminatory triage protocols. The Ontario government is seeking to remove the requirement that all people consent to their medical care (or lack thereof). I lived in fear of having to go to the hospital even before the pandemic. I have had my access needs continually denied at Grand River Hospital in Kitchener, Ontario. At one routine day surgery I was told I was unable to have my support person wait with me. I struggled as a nurse tried to wrest my assistive devices from me while I was temporarily aphasic and unable to advocate for myself. An anal exam was performed without my consent. The staff told me that they did not know about my access needs because my pre-op questionnaire was too long to read. These are just a few details from one of many examples. As disabled bioethicist Dr. Joseph Stramondo has pointed out, non-disabled people routinely and falsely assume that our lives are not valuable to us and we frequently encounter the assumption that we would be “better off dead.” Medical ableism is real. It is an everyday occurrence. And as we know all too well, when it intersects with racism it is often deadly.

My experiences are not unique. After about a decade of symptoms it took me over a year on a waitlist to see a doctor who could provide me with a diagnosis for one of my conditions, the treatment for which is not covered by provincial or private health insurance and is costly. I am continually in search of accessible, affordable housing, the lack of which exacerbates my symptoms and jeopardizes my long term health. With fluctuating capacity and challenging access needs, I face barriers to traditional work. I have even been denied volunteer opportunities on the basis of my disability. For years my partner and I got by on his salary alone, which until a few months ago was below a living wage. I live in fear of my partner becoming disabled or dying. I live in fear of my own unpredictable capacity narrowing further. At the same time disability has saved me. Disability culture is rich and meaningful. The work of Disabilty Justice advocates is groundbreaking and is building a better world to come. Identifying as disabled and connecting with other disabled people has enriched my life immeasurably. Though I suffer, my disabled bodymind is not the central problem. Systemic oppression is.

Minister Lametti falsely claims that the structure of Bill C-7 was informed by national disability organizations and advocates. All along advocates have stated that the only meaningful safeguard in MAID is the requirement of reasonably foreseeable death. This has been echoed by the UN Special Rapporteur in his testimony and the statement that he recently co-authored. Yet the legislative process continues, and rapidly. Minister Lametti claims that the motivation for the speedy process of this legislation is to alleviate suffering. Perhaps he is referencing the suffering faced by those whose deaths are reasonably foreseeable and are not served well by C-14. As disabled advocates, the UN, and others testify, the vast majority of the suffering experienced by disabled people is due to the disabling effects of structural ableism and intersecting systems of oppression. If Minister Lametti is concerned about our wellbeing, I submit that a truly compassionate response to our suffering would be meaningful and adequate income support, safe and affordable housing, anti-ableist medical care, access to resources, safe drinking water, pharmacare, home care, and deinstitutionalization.

I see the emotion and pleas of disabled people in the Senate hearings—especially multiply marginalized disabled people—frequently undermined and ignored. Many panelists and senators seem to be treating the expansion of MAID and the creation of a special track to early death as an intellectual exercise while those with lived experience and expertise seem to be seen as “too sensitive.” Our emotion is for good reason. As Trudo Lemmons points out, politicians seem to be pretending that this is a new conversation, one that it is detached from the traumatizing legacy of (and, many would argue, ongoing practices of) eugenics. Politicians seem to choose not to acknowledge that the majority of disabled people in Canada are also poor, racialized, struggling to survive, and not afforded access to the resources needed to live, let alone thrive. The passion expressed by so many disabled people is, I believe, the appropriate response to this conversation.

What I want you to understand is that offering early death for disabled people in this context is not just morally reprehensible, which it most certainly is. It is also a loss. A collective loss. Disabled lives, like all lives, have inherent value. Disabled lives enrich our world. Grief, fear, outrage, and trauma are entirely appropriate responses to the status-quo, and to these discussions of Bill C-7. My heart hurts at the meagre support for, and continual devaluing of marginalized people in Canada. Everybody’s heart should be hurting.

You have tremendous political power. I hope that the Senate will act as the wise council of elders that Senator Murray Sinclair urges it to be. I hope that you will see Bill C-7 for what it is: yet another ableist “solution” for people with disabilities—one that will impoverish all of our lives. May your response be appropriate.

Sincerely,

Aislinn Thomas -- Aislinn Thomas (she/they) aislinnthomas.ca