Thank you.
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 that 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, who have applied for MAID or who are contemplating MAID. This is not because they want to die; it's because they cannot get the housing, medical care, disability services or supports they need, and they are too poor to afford to purchase these services privately.
I'll give you just one example, with details and identifying information changed in order to protect the privacy of the person. It's a person in their thirties with a degenerative neurological condition. They have very limited mobility. They need assistance with all activities of daily living. That includes getting out of bed, getting dressed, toileting, cooking, cleaning, grocery shopping, etc. This person has, quote-unquote, “high support needs”, but they live a full life in their own apartment. They work part time and spend time with friends and 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, however, their family member died, leaving them without support for many hours each day. They've been refused additional funding for attendant services. They've 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, which is not really a choice, the person has decided to apply for MAID. They've been very clear: They don't want to die. They are not suffering because of their disability. They want to continue living in a dignified way in the community, but that's not possible, because the supports they need are not available.
These kinds of client experiences, and numerous similar cases that have been reported in the media, leave us deeply concerned about the dangerous impact that track two is having on low-income disability communities. The track two safeguards built into the legislation may be intended to protect vulnerable people 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.
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 today is that based on the experiences of the clients and disability communities that ARCH works with, 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 Gerard 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's a myth that MAID law gives us all equal rights to make decisions about our death, but in operation, 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 access to health care and housing systems, and, in short, giving people with disabilities the wherewithal to live the lives they want to live in the communities of their choosing.
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 also at the social and economic environments in which they play out. In Canadian law, inequality analysis recognizes that some people may be disproportionately affected by structural conditions that constrain their choices.
ARCH urges the committee in its final report to government to be clear that some people with disabilities are being induced to consider, apply for and go through with MAID not because they are suffering because of their disability but because of social and economic inequality.
Thank you.