Kerri Joffe
kerri [dot] joffe [at] arch [dot] clcj [dot] ca
Good morning members of the committee.
I am a lawyer working at ARCH Disability Law Centre. ARCH is a specialty legal clinic that provides legal services to people with disabilities in Ontario. ARCH is a poverty law clinic, meaning the majority of the legal services we provide are to low-income people with disabilities. ARCH also works on national and international disability rights.
We are deeply concerned about the availability of MAiD for people with disabilities whose death is not reasonably foreseeable.
At ARCH we have clients who have died by MAiD, have applied for MAiD or are contemplating MAiD not because they want to die, but because they cannot get the housing, medical care, disability services or supports they need and are too poor to afford purchasing these resources privately.
I will give you just one example – I have changed some identifying details to protect privacy:
A person in their 30s who has a degenerative neurologic condition and has very limited mobility. They need assistance with all activities of daily living: getting out of bed, getting dressed, toileting, cooking, cleaning, grocery shopping, etc. This person has high support needs, but lives a full life, in their own apartment, works part-time, spends time with friends, volunteers. This is possible because they receive some provincial funding to hire their own attendants, and they have family who fill in the extra hours of support. Recently their family died, leaving them without support for many hours each day. They have been refused additional funding or attendant services. They have been told that the only way to get their high support needs met is to move into a long-term care facility. Moving would require the person to leave their community, give up most of their employment, give up their independence, and live in a completely inappropriate setting among seniors more than double their age. Facing this “choice” the person has decided to apply for MAiD. They have been very clear that they do not want to die. They want to continue living in a dignified way in the community. But this isn’t possible because the supports they need are not available.
It is these kinds of clients’ experiences and numerous similar cases that have been reported in the media that leave us deeply concerned about the dangerous impact track 2 MAiD is having on low-income disability communities.
The track 2 safeguards built into the legislation may be intended to protect vulnerable persons and ensure that decisions about MAiD are free, informed and unambiguous, but in our experience, the reality is that there is no real, free choice for people with disabilities who exist in pervasive socio-economic deprivation and who have no alternatives for living a dignified life in the community.[1]
I am not expressing an ideological position that is anti-MAiD, nor am I expressing a position that seeks to undermine autonomy or the right to make decisions about one’s own life. Everyone must be free to choose, especially when it comes to deeply personal decisions about life and death.
What I am pointing out, based on the experiences of the clients and disability communities that ARCH works with, is that our law appears to offer freedom to choose medical assistance in dying but in fact there is no freedom of choice for many disabled people.
At a UN conference in June, Professor Gerrard Quinn, the UN Special Rapporteur on the Rights of Persons with Disabilities, said that when it comes to autonomy it is important to distinguish between myth and operation. There is a myth that MAiD law gives us all equal rights to make decisions about our death, but in reality, for many people with disabilities, choices are weighed down by accumulated disadvantages.
We cannot talk about free, uncoerced choice if we are not at the same time radically addressing social and economic supports, expanding health care and housing systems, in short giving people with disabilities the wherewithal to live the lives they want to live in their communities.
Canadian law has recognized this concept too. The Supreme Court of Canada has said that “equality looks not only at the choices that are available to individuals, but at ‘the social and economic environments in which [they] pla[y] out’.” [2] In Canadian law, an equality analysis recognizes that some people may be disproportionately affected by structural conditions which constrain their choices.[3]
ARCH urges the Committee, in its final report to government, to be clear that there are people with disabilities who are being induced to consider, apply for, and go through with MAiD because of systemic social and economic inequality.
Endnotes
1. For example in a recent CTV news report, “Denise”, a woman with multiple chemical sensitivities who has applied for MAiD said, "when people are backed into a corner, living in poverty for years on end it doesn't feel like a choice anymore." CTV News, available online: https://toronto.ctvnews.ca/video?clipId=2434019&binId=1.3378530&playlistPageNum=1.2. Fraser v Canada (Attorney General), 2020 SCC 28 at para 88.
3. Ibid at para 19, citing Sonia Lawrence, “Choice, Equality and Tales of Racial Discrimination: Reading the Supreme Court on Section 15”, in Sheila McIntyre and Sanda Rodgers, eds, Diminishing Returns: Inequality and the -Canadian Charter of Rights and Freedoms (2006) 115 at 115–116.