Medical Assistance in Dying Committee on Nov. 18th, 2022

[Sylvie Champagne]

If the individual is capable of making the decision, we believe that they are the one who should give consent. Obviously, the care team is involved in these discussions, and loved ones are usually involved in the process.

Nonetheless, from a legal standpoint, the person involved is the one who has to give their consent.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Thank you very much.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Now we will go to Monsieur Thériault for five minutes.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Madam Chair.

Ms. Carr, you spoke a great deal about autonomy. The state could decide to exclude any person with a disability from accessing medical assistance in dying. Does that line up with the position among people with a disability? Is that your testimony's conclusion?

[Krista Carr]

My ultimate thought on the matter is that when we first—

[Luc Thériault, Bloc, Montcalm, QC]

I'm losing a lot of time because of interpretation. I hope the chair will consider the fact that I need all of my speaking time, and that interpretation delays won't count.

Go ahead, Ms. Carr.

[Krista Carr]

Okay, thank you.

As far as autonomy goes, our position as an organization and the position in the disability community writ large is that when we brought MAID in, it was restricted to end of life. It was available on an equal basis to anybody whose death was reasonably foreseeable—

[Luc Thériault, Bloc, Montcalm, QC]

That is not my question, Ms. Carr. I asked if you agreed with the position that the state should not allow medical assistance in dying for people with a disability.

Is that in fact your testimony's conclusion?

[Krista Carr]

The conclusion of my testimony is that MAID should not be provided to anybody whose death is not reasonably foreseeable and who is not at the end of their life, because that is the great equalizer that does not single out one group of people who are not dying.

Thank you.

[Luc Thériault, Bloc, Montcalm, QC]

Yes, thank you.

You talked about autonomy. The term autonomy, in its ethical and moral sense, cannot be reduced to physical, social or psychological autonomy. Autonomy, in the moral sense of the term, relates to capacity, and respecting a person's capacity to make the most accurate critical judgment about their human condition.

Do you agree with that?

[Krista Carr]

I agree that there is more to autonomy than.... In order to be able to make an autonomous decision, you have to be able to do that on an equal basis with others.

My point was that when you are living in poverty—unhoused or marginalized intersectionally because of race, indigeneity, gender or other factors—you can't make an equal choice on the same basis as someone else can make it when you are living in those conditions. Your intolerable suffering is being caused by the socio-economic and community-based factors of your life. It isn't actually being caused by the disability. That is what we see time and time again.

I don't get to make—

[Luc Thériault, Bloc, Montcalm, QC]

Thank you.

What, then, motivated Ms. Gladu and Mr. Truchon, both people living with serious disabilities, to request medical assistance in dying at the end of a full and complete life?

Did they request it because they were the victims that you described?

[Krista Carr]

I know the story of both individuals very well.

Monsieur Truchon was living his life in the community, but he had a progressive disability. Based on the system they have in Quebec for supporting people with disabilities, he ended up institutionalized. He lived in an institution for five years, fought like heck to get out of that institution and couldn't. Finally he gave up and said, “If I have to live my life this way, I want to be able to choose death instead.” Those were the factors that led Monsieur Truchon to that decision.

Madame Gladu also had a progressive condition and knew or felt that when her condition got to a certain point, she too would be forced to leave her home and community and live in an institution. She didn't want to have to do that.

Those factors—

[Luc Thériault, Bloc, Montcalm, QC]

Excuse me, but Ms. Gladu waited for more than a year, and she said that she was relieved to finally have a choice. You want to take that choice away from her.

[Krista Carr]

This is not a choice that we're giving to everybody. Do you not see that this choice is being given to only one group of people who have a very specific set of conditions?

Madame Gladu didn't want to have to live in an institution at some point in her life. That's why she wanted the choice. If she would have been able to live the rest of her life in her home, in her community, that would have been a very different thing, but remember, we're only.... You're marginalizing this to one particular protected group of people on a particular set of characteristics.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Ms. Carr.

Lastly, we'll have Mr. MacGregor for five minutes.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you very much, Madam Co-Chair.

I appreciate the testimony from all of our witnesses today.

When this motion was passed in the House of Commons, this committee was tasked with exploring five different themes. Yes, it's within the context of medical assistance in dying, but I also think that our committee has a bit of leeway and freedom to consider many things that are also related to MAID.

I know that when we talked about the protection of persons with disabilities, we looked at this theme earlier in the year, so we already have some great testimony on record, but I think it's important in this committee's study of this particular theme to understand that it is taking place in the context of the federal government's disability inclusion plan. Also, of course, there's another House committee that's now examining Bill C-22, the Canada disability benefit act.

Maybe, Ms. Carr, I'll change tack a bit. Do you have anything you can add to...? Has your group been consulted on or involved in those other areas, in the disability inclusion plan and the Canada disability benefit act?

I know that when it comes to economic security, that's just one small part of it, but I've spoken with a lot of constituents of mine out in Cowichan—Malahat—Langford who've been real advocates on trying to get a federal disability benefit of about $2,200 a month. They think that.... Well, I think it's a fact that when you look at the disability rates in each province, you see that there's a state of “legislated poverty”, as they put it.

Do you have any thoughts on the Canada disability benefit act and the disability inclusion plan that you would like to see our committee concentrate on when it issues its final report and recommendations?

[Krista Carr]

There were lots of questions in there.

The first is, yes, we've been consulted. I presented to HUMA earlier this week, and we have been involved, obviously, in the consultations around the Canada disability benefit and the disability inclusion action plan. We have been very heavily involved in all of those discussions.

Certainly these are good things to be doing and we're very supportive of them. Anything this committee can do to support those things, I think is really good.

The only thing I would say is that a Canada disability benefit will certainly support economic security if it's done well and is adequate in all of those things. Lots of Canadians with disabilities—73% of the people I serve who live outside the family home—are living in poverty.

However, it's not a substitute for keeping our MAID legislation at end of life, so I don't want to pit one off against the other and say, “Oh well, you're going to make the MAID regime okay in track two if you go ahead and do these things.” You will certainly make the lives of people with disabilities better by doing those things, and we will continue to fight for those things, but the issue still remains that the lack of supports and services, the lack of housing options, the institutionalization, and all the other factors that people face will still weigh heavily in the whole conversation we're having today. The only “safeguard” we have is that people are supposed to be told what's available to them. I can guarantee you that when people are showing up and asking about MAID, they know what is “available”, but they have never been able to get it; or it isn't available, or they have been on a wait-list for 10 years, etc.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

I appreciate that.

I'm just saying that because there is no legislation before the House right now, I think our committee has a fair bit of latitude in each of these five themes of how expansive we want to be in terms of our recommendations in the final report.

Ms. Peters, I have 45 seconds, and I don't want to leave you out.

If you want to add anything to this, please go ahead.

[Gabrielle Peters]

We're going to have to bear with my voice.

I think that first of all there is a lot of misrepresenting of what is necessary for autonomous decision-making. In terms of poverty, you have to understand that poverty is both a cause of our oppression and also a manifestation of the position that disabled people hold in society.

There is no one who is not disabled who would qualify for track two, so the question of.... No, that makes absolutely no sense.

In terms of poverty—the problems and the concerns—there are many concerns we are hearing at the Disability Filibuster about the disability benefit. They're about gatekeeping, the criteria, how these things will be enacted. There are lots of unknowns, but it doesn't even seem to offer the hope of moving above the poverty line.

There is new research out that has shown that the poverty line has an ableist bias. There is a paper in a peer-reviewed journal showing something that disabled people have said all along, which is that it costs more to live as a disabled person in Canada—

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Ms. Peters.

I will turn this over to my co-chair for the next round of questioning.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin.

Senator Mégie, you have the floor for three minutes.

[Marie-Françoise Mégie, senator, Quebec (Rougemont), ISG]

Thank you to all the witnesses for being with us today.

Ms. Carr, during the Senate review of Bill C‑7, we heard witnesses from the disability community. They said many among you think that they are vulnerable. From their point of view, putting this label on them means stigmatizing them. They have the right, like anyone else, to give their consent or to request medical assistance in dying.

What is the state's role in terms of drawing a line between protecting persons with a disability who may be vulnerable, and the necessity of respecting the individual choices they might make? How do we avoid infantilizing them? They were the ones to use that term. By saying that they are vulnerable, we are trying to infantilize them.

What do you think?

[Krista Carr]

People with disabilities are not vulnerable; they are made vulnerable. They are put in situations of vulnerability based on the socio-economic...and all the things we have already talked about, so I won't repeat that again.

I think the question you're asking me is whether or not there are some people with disabilities who want to be able to choose whether or not they can make a decision about dying. I'm not trying to infantilize anyone. What we're talking about here is that we have two tracks. We have a track for people at end of life who are suffering intolerably and whose lives are going to be finished soon, and they get to choose the timing, etc., but we have this other track that has pigeonholed one particular group of people. Anybody else in the country, by virtue of being any other marginalized population—indigenous, racialized or whatever—who says they are suffering intolerably from factors that are external to their personal characteristics isn't getting offered death. We're giving them support to live good lives.

That's the point I am making here. It's that we are more marginalizing and more devaluing and facing people.... We're basically telling people with disabilities that having a disability is a fate worse than death.

We're not just getting people asking for MAID. We are having people with disabilities constantly being offered MAID now as a health care choice. They show up in the health care system with a health care issue that is not terminal and they are living in difficult conditions. We have story after story of people being offered MAID as a solution to their health care situation.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

We will now go to Senator Kutcher for three minutes.