As Bill C-7 reaches Senate, UN watchdog raises concerns about MAiD for persons with disabilities

Canadian legislation aimed at expanding access to medical assistance in dying is raising concerns among human rights experts, including the UN Human Rights Council's special rapporteur on the rights of persons with disabilities.

Bill C-7, which passed in House of Commons and is now being debated in the Senate, would allow Canadians to access medically assisted death even if they're not already facing "reasonably foreseeable" natural death. 

The bill was introduced earlier this year in response to a 2019 Superior Court of Quebec ruling that found it unconstitutional to deny medically assisted death to people who aren't already dying. 

"We're concerned that it massively expands the range of people with disabilities, who potentially will be given access," Gerard, the UN's watchdog for people with disabilities, said.

"We're concerned that there might be issues there ... undermining their autonomy and their capacity to make the right decisions. I don't mean the lack of legal capacity. What I mean is subtle pressure being brought to bear by, for example, lack of services or lack of community living options."

Gerard voiced his concerns while testifying in front of the Senate committee debating the bill on Monday. Here is part of his conversation with As It Happens host Carol Off. 

Who do you think is at risk here? If this law happens and there are challenges to it, what vulnerabilities does it introduce?

People are worried [about] what they call the architecture of choice, the various inputs into making our decisions will be, as it were, rigged, when it comes to lots of people with disabilities because of lack of availability or access to basic services to enable them to live with their condition. 

And one suggestion was made in the Senate hearing that the 90-day period being used to assess whether or not somebody is eligible might better be used to actually put together an emergency task force to respond to the care and needs of particular individuals.

Without the support and without what people need in order to live equally within the society, people will perhaps be inclined to take advantage of medical assistance in dying — not because they have no choices, but because they were made to have no choices by the lack of resources that will allow them to live a good life?

Yes, very subtly. But in fact, yes, also, there is a concern that even if we didn't have that effect, it still sends — or perhaps reinforces is a better word — for ableist assumptions that are embedded out there in society.

What's an ableist assumption?

It's a very pernicious assumption, but somebody who has a disability, their life is somehow worth less than somebody else's life.

Bill C-7 came about because of a ruling in Quebec. One of the plaintiffs was a woman named Nicole Gladu. She has post-polio syndrome … the decision was she should have a right to access medical-assistance in dying because of just how unbearable her life had become.… What do you say to Nicole Gladu?

That was a very humanitarian judgment … and the judge opened up the knowledge of human experience and responses accordingly.

However, it's probably safer in terms of establishing a public policy into the future to appeal such judgments and to get a much more definitive ruling from the Supreme Court so that the full parameters of the case are fully tested out at that level.

[Editor's Note: Justice Minister David Lametti testified in front of the Senate committee Monday that the government could head off a long court battle over C-7 by asking the Supreme Court to advise on the bill's constitutionality.]

One of the other people in that case is a man who became suicidal. He considered moving his wheelchair into the path of a bus or drowning himself in a river, he said in the court case, because he just couldn't bear with the pain he was in. Again, no foreseeable death. What recourse should these people have?

It's a really difficult one. I'm not sure that we should leave it exclusively in the hands of trial judges or even mid-level judges. I think we really need much more playing out of all of the arguments so that the population at large, including people with disabilities, are satisfied.

But what should be their rights?

They have autonomy rights. If the tool being used to advance that autonomy right feeds into or undermines positive images of people with disabilities, then that calls for us to pause and think before pushing that button.

The thing about ableist assumptions is nobody in the Senate on the House of Commons intends this. It's all about the impact your legislation is going to have.- Gerard Quinn, UN rappoteur on the rights of persons with disabilities 

How do you give people the means to become more autonomous [while] at the same time protecting their right to say, "I can't bear this anymore"?

I think all of the dimensions of the arguments, the autonomy-based arguments probably weren't fully argued out as relative to the equality arguments in the lower courts.

I think if there were a definitive ruling that agonized over the competing rights and then tried to strike some sort of meaningful balance, that would be a more sure way forward than relying on the lower court ruling.

Do you think there is a way to balance that? Do you think that there is a place for medical assistance in dying for people with disabilities?

It has to be explored. If there are ways of doing it without directly or indirectly reinforcing ablest assumptions, then let's search for that way out of the conundrum. But I don't think all of the arguments were put in the lower courts. 

Would you like to see it excluded as an option, medical assistance in dying for the disabled?

I would personally lean very heavily against it, partly because of the legacy of ableism in all of our cultures, not just Canada.

And the thing about ableist assumptions is nobody in the Senate on the House of Commons intends this. It's all about the impact your legislation is going to have. And I think it's reasonably foreseeable that open-ended legislation could certainly reinforce very subtle ableist assumptions in society. 

Do you think there are unintended consequences of such a law?

Always. There's always a massive difference between the law on the books of the law and action ... and the way the law is received and operationalized.

Written by Tahiat Mahboob. Interview produced by Kevin Robertson. Q&A has been edited for length and clarity.