{"id":93,"date":"2023-08-07T15:48:58","date_gmt":"2023-08-07T19:48:58","guid":{"rendered":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/?post_type=part&p=93"},"modified":"2023-08-25T14:28:01","modified_gmt":"2023-08-25T18:28:01","slug":"michael-bach-transcript","status":"publish","type":"part","link":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/part\/michael-bach-transcript\/","title":{"raw":"Michael Bach - Transcript","rendered":"Michael Bach – Transcript"},"content":{"raw":"I don't want to, well, I may go through some of my side, but let me just kind of dive in to pick up where we've, ended off, in this conversation, I guess as I'm listening to it. So we're trying to move forward a reform process that delivers, I think, on the aspirations of the disability rights community and countries around the world and globally, as we were negotiating the convention, and working to articulate Article 12, I think in the, which is to, to protect, to recognize, protect and support the right to decide on an equal basis. In the chat, this conversation, and Simon, I appreciate, you know, how you've articulated this tension now that's emerging between the right to decide and the right to life, in the context of medical assistance in dying as we're seeing that provisions for assistance in dying, kind of, I mean, we've expanded massively in Canada, but it's happening around the world. And I think this is one of the tensions, whether we're talking, that the right to decide on an equal basis doesn't exist outside of a context of a whole set of rights. It doesn't trump all other rights and getting the balance between them in any particular situation, I think is what we're confronting. There's the right to decide, there's the right to be free from harm, the right to be free from abuse and neglect, the right in some situations to have access, or some jurisdictions, to have access to assistance in dying. So how do we how do we get this balance right?\r\n\r\nIn the Canadian context, I would say that we've been, I want to come to the medical assistance in dying piece, because it's shown up in the chat, but I think we've been, I think about it as kind of operating at three levels. We've been seeking law reform, we've been seeking change in community practice, and we've been trying to create tools so that people can strengthen their advocacy for their own right to decide in whatever context they're in. On the law reform front, we've not had a huge amount of success, I would say that there continues to be this tension in the Canadian context, that while we want to, we recognize support for decision making, to some extent, really, it's still largely for people who meet that usual test of having understanding and appreciation of the nature and consequences of their decision, decision and ultimately being able to make decisions on their own. So supported decision making, for the most part, in the Canadian context, is for people who, you know, may require some plain language support, some more time in making a decision, but there's still a pretty, we haven't for the most part shifted the boundary to include people with more significant disabilities. And the reason is because we still hold on to this idea that what makes us equally human is that we're able to have certain levels of insight, understanding, and appreciation that means that we're able to act independently. So this notion of relational autonomy, interdependence, is not one that's found its way into the law for the most part in the ways that for instance, the law in Colombia has recognized. You're gonna have to excuse me one second, while I grab a kleenex, I'm sorry to interrupt.\r\n\r\nWe have seen recently in New Brunswick, a really substantive reform that begins to approach the kind of model that we've seen in Colombia, in Romania, in Peru, which recognizes a kind of three level process for supporting the right to decide. One, I can appoint supporters I need on my own, and I bring supporters into a financial or healthcare situation and I am able to, to the extent that the other party in that legal relationship recognizes the support, I'm able to to exercise my right to decide. Where people challenge me in healthcare consent situation, for example, I can go to a notary or a lawyer and seek to have my support arrangement people, who I'm appointing to assist me, recognized by a notary. Where I may have a more significant intellectual, psychosocial, cognitive disability, I can go to court and have supporters recognize people who are are able to interpret my will and preferences as the basis for decision making and translate those into specific legal decisions. So that the New Brunswick legislation provides for that, in a way also that the Columbia legislation which recognizes this idea that in situations where a person has a significant intellectual, cognitive disability, the decision making support they may require is a person who can interpret their will and preferences and translate it, and you know, so special support arrangements being recognized. That's really where we're trying to get and we're beginning to see that in law reform. But that's a long road and to a point that was made, I think, in, in the earlier conversation with Stephen and Simon, I think this idea that of kind of epistemic injustice, the idea, as I understand that notion, that there there are, the dominant ways of knowing exclude certain human realities, exclude certain understandings of what it means to be a human agent. That's what we're, that's what we're, I think, really confronting and the law hasn't caught up. The law has not caught up in so many ways, with the realities of new ways that people are being supported and the ways that people can exercise their right to decide.\r\n\r\nSo interesting example, it's not the Canadian context, it's one that we've been part of in Bulgaria, where, like in Colombia supporting development of pilot initiatives, and one of the pilot initiatives was with a community based initiative to support people with psychosocial disabilities, people who are keenly stripped of their rights involuntarily committed and treated. And the pilot was with this community based initiative, not to, like to support people in ways that would refuse forced treatment and forced confinement all the way along, all the way along to stick with people and to refuse that forced treatment and confinement. And so what they they organized was that this support, this community agency, made up of social workers and psychologists would, they shifted their whole way of thinking, people were no longer clients, they were decision makers in their own right and the job of the agency was to, this is the global initiative on psychiatry in Bulgaria, to support them to make their own decisions, which would mean sometimes staying on the streets through the middle of the night with a person to understand what they were communicating and what they wanted. And they, through the pilot initiative they supported about 30 people. This required a huge shift in thinking of the, this is about community practice exactly, required a huge shift in thinking. A number of the social workers left the agency because they could not shift in their own heads this power arrangement, where people were no longer clients, they were people who had a right to decide and direct their own lives. And what they found as they shifted the culture is that the in within a two year, two to three year period, none of those 30 people that had been in the pilot that were routinely, had been routinely, forcibly confined and treated against their will, that stopped happening, because they had someone who would stick through them. They had as a social worker, I was sharing this in small group, as a social worker who said to me, we've come to realize that no matter how difficult it is to understand sometimes when someone's expressing or someone's behaving in certain ways, they are trying to express something. So we understand that expression, even if someone may label a psychotic state, as an expression of something that that is important to them. This isn't to disappear in any way, Stephen, that those situations where where a person can feel there there, there's a threat of violence about them, those those are real situations and, and need to be addressed. But it was really instructive that when they shifted their system of support, they started to, the realities for people, started to change. And so I think, while the law in Bulgaria, for example, has not caught up, caught up with and recognize that system of support, at a community level, they've changed people's lives, they've they've, because they created systems of support around people to support the right to decide, that really does change, you know, really does alter what's going on.\r\n\r\nSo in the Canadian context, because law reform is so far behind, we really have shifted to a community to investing in changing community practice and so the slide up here is, is a process and these tools are available on our site, for community pilot, supporting community based pilot and demonstration initiatives on on the right to decide and creating support systems around individuals and pushing that absolutely, as far as you can. Now, people still come up against the healthcare system where you've got to meet that traditional idea of what it means to, to exercise the right to decide and at that case, people may launch human rights cases or legal cases. But we're we're creating, the idea is to create a new culture to have new conversations about what it means to support a person and to document those so that we can shake the public imagination about the possibilities for supporting someone, so that the law can begin to catch up with this. We are in this moment where the law in so many cases cannot imagine what support looks like, so we need to build it, we need to build it around people in a new way. And a third level of work that we've done is support people with some tools to to call for the duty to accommodate them in decision making in their own whether they're with a bank or with a hospital or healthcare situation. In just two minutes that I've got, I want to just reflect just briefly on this question about medical assistance in dying, and whether that is a reflection of the right to decide or not. And this is where I think our talk and are thinking about the right to decide reaches a limit point that we have to be really, really careful. So the legislation in Canada provides for really an exception to the Criminal Code prohibition on assisted suicide. So in certain situations, the Criminal Code provides that the prohibition criminal prohibition on assisted assisted, assisted suicide stance, but it provides now with an exception in certain circumstances. The first round of exceptions was for people who were at the end of life. There's been a constant push to expand that and through legal cases, which have been one, that's that's now changed. So you don't have to be at the end of your life, you have to have a disability. So the only charter protected group, constitutionally protected group, that can now access assistance in dying when they're not dying, are people with disabilities and people with who had a diagnosed mental health disorder to use that legal language there, it is to be expanded to that group but that's been that's been held off for another year, as someone noted, in the in the chat.\r\n\r\nSo we're in a situation where in the absence of supporting people, we have provided access to medical assistance in dying, and we call it choice. So we're now actually, rather than we're going to keep in place protective measures, coercive protective measures, and we're going to provide you with the so called right to die to end your suffering. So we've got people who are in law courts and psychiatric hospitals who are requesting, and they're already getting it, assisted assisted suicide, because without support, they could die anyway, so they're going to be suffering so let's give them the right to decide to die. So we've got to be very careful I think as we go forward that we don't, you can see how this notion of the right to decide can be twisted in a neoliberal legal structure and a neoliberal time to be designed to have the lives of people who are some of the most marginalized and oppressed in our society appear as though their right to decide is being fulfilled. And so in the absence of actually supporting and figuring out how to support people to exercise their autonomy, we're giving them the option to die, rather than locking them up, or we're giving them the option to die. That's the situation that that we're in and that I think we have to be really cognizant of and, and cautious about. So I'm gonna leave it there I think. We have to figure out where, you can intervene at any number of of places, I guess is my is my, my kind of overall point. And we but we are at a point of a real struggle that we haven't entirely figured out what this means, but we have to be really cautious that we don't let the rhetoric of the right to decide dominate real struggles to ensure that people have access to support that they need.","rendered":"

I don’t want to, well, I may go through some of my side, but let me just kind of dive in to pick up where we’ve, ended off, in this conversation, I guess as I’m listening to it. So we’re trying to move forward a reform process that delivers, I think, on the aspirations of the disability rights community and countries around the world and globally, as we were negotiating the convention, and working to articulate Article 12, I think in the, which is to, to protect, to recognize, protect and support the right to decide on an equal basis. In the chat, this conversation, and Simon, I appreciate, you know, how you’ve articulated this tension now that’s emerging between the right to decide and the right to life, in the context of medical assistance in dying as we’re seeing that provisions for assistance in dying, kind of, I mean, we’ve expanded massively in Canada, but it’s happening around the world. And I think this is one of the tensions, whether we’re talking, that the right to decide on an equal basis doesn’t exist outside of a context of a whole set of rights. It doesn’t trump all other rights and getting the balance between them in any particular situation, I think is what we’re confronting. There’s the right to decide, there’s the right to be free from harm, the right to be free from abuse and neglect, the right in some situations to have access, or some jurisdictions, to have access to assistance in dying. So how do we how do we get this balance right?<\/p>\n

In the Canadian context, I would say that we’ve been, I want to come to the medical assistance in dying piece, because it’s shown up in the chat, but I think we’ve been, I think about it as kind of operating at three levels. We’ve been seeking law reform, we’ve been seeking change in community practice, and we’ve been trying to create tools so that people can strengthen their advocacy for their own right to decide in whatever context they’re in. On the law reform front, we’ve not had a huge amount of success, I would say that there continues to be this tension in the Canadian context, that while we want to, we recognize support for decision making, to some extent, really, it’s still largely for people who meet that usual test of having understanding and appreciation of the nature and consequences of their decision, decision and ultimately being able to make decisions on their own. So supported decision making, for the most part, in the Canadian context, is for people who, you know, may require some plain language support, some more time in making a decision, but there’s still a pretty, we haven’t for the most part shifted the boundary to include people with more significant disabilities. And the reason is because we still hold on to this idea that what makes us equally human is that we’re able to have certain levels of insight, understanding, and appreciation that means that we’re able to act independently. So this notion of relational autonomy, interdependence, is not one that’s found its way into the law for the most part in the ways that for instance, the law in Colombia has recognized. You’re gonna have to excuse me one second, while I grab a kleenex, I’m sorry to interrupt.<\/p>\n

We have seen recently in New Brunswick, a really substantive reform that begins to approach the kind of model that we’ve seen in Colombia, in Romania, in Peru, which recognizes a kind of three level process for supporting the right to decide. One, I can appoint supporters I need on my own, and I bring supporters into a financial or healthcare situation and I am able to, to the extent that the other party in that legal relationship recognizes the support, I’m able to to exercise my right to decide. Where people challenge me in healthcare consent situation, for example, I can go to a notary or a lawyer and seek to have my support arrangement people, who I’m appointing to assist me, recognized by a notary. Where I may have a more significant intellectual, psychosocial, cognitive disability, I can go to court and have supporters recognize people who are are able to interpret my will and preferences as the basis for decision making and translate those into specific legal decisions. So that the New Brunswick legislation provides for that, in a way also that the Columbia legislation which recognizes this idea that in situations where a person has a significant intellectual, cognitive disability, the decision making support they may require is a person who can interpret their will and preferences and translate it, and you know, so special support arrangements being recognized. That’s really where we’re trying to get and we’re beginning to see that in law reform. But that’s a long road and to a point that was made, I think, in, in the earlier conversation with Stephen and Simon, I think this idea that of kind of epistemic injustice, the idea, as I understand that notion, that there there are, the dominant ways of knowing exclude certain human realities, exclude certain understandings of what it means to be a human agent. That’s what we’re, that’s what we’re, I think, really confronting and the law hasn’t caught up. The law has not caught up in so many ways, with the realities of new ways that people are being supported and the ways that people can exercise their right to decide.<\/p>\n

So interesting example, it’s not the Canadian context, it’s one that we’ve been part of in Bulgaria, where, like in Colombia supporting development of pilot initiatives, and one of the pilot initiatives was with a community based initiative to support people with psychosocial disabilities, people who are keenly stripped of their rights involuntarily committed and treated. And the pilot was with this community based initiative, not to, like to support people in ways that would refuse forced treatment and forced confinement all the way along, all the way along to stick with people and to refuse that forced treatment and confinement. And so what they they organized was that this support, this community agency, made up of social workers and psychologists would, they shifted their whole way of thinking, people were no longer clients, they were decision makers in their own right and the job of the agency was to, this is the global initiative on psychiatry in Bulgaria, to support them to make their own decisions, which would mean sometimes staying on the streets through the middle of the night with a person to understand what they were communicating and what they wanted. And they, through the pilot initiative they supported about 30 people. This required a huge shift in thinking of the, this is about community practice exactly, required a huge shift in thinking. A number of the social workers left the agency because they could not shift in their own heads this power arrangement, where people were no longer clients, they were people who had a right to decide and direct their own lives. And what they found as they shifted the culture is that the in within a two year, two to three year period, none of those 30 people that had been in the pilot that were routinely, had been routinely, forcibly confined and treated against their will, that stopped happening, because they had someone who would stick through them. They had as a social worker, I was sharing this in small group, as a social worker who said to me, we’ve come to realize that no matter how difficult it is to understand sometimes when someone’s expressing or someone’s behaving in certain ways, they are trying to express something. So we understand that expression, even if someone may label a psychotic state, as an expression of something that that is important to them. This isn’t to disappear in any way, Stephen, that those situations where where a person can feel there there, there’s a threat of violence about them, those those are real situations and, and need to be addressed. But it was really instructive that when they shifted their system of support, they started to, the realities for people, started to change. And so I think, while the law in Bulgaria, for example, has not caught up, caught up with and recognize that system of support, at a community level, they’ve changed people’s lives, they’ve they’ve, because they created systems of support around people to support the right to decide, that really does change, you know, really does alter what’s going on.<\/p>\n

So in the Canadian context, because law reform is so far behind, we really have shifted to a community to investing in changing community practice and so the slide up here is, is a process and these tools are available on our site, for community pilot, supporting community based pilot and demonstration initiatives on on the right to decide and creating support systems around individuals and pushing that absolutely, as far as you can. Now, people still come up against the healthcare system where you’ve got to meet that traditional idea of what it means to, to exercise the right to decide and at that case, people may launch human rights cases or legal cases. But we’re we’re creating, the idea is to create a new culture to have new conversations about what it means to support a person and to document those so that we can shake the public imagination about the possibilities for supporting someone, so that the law can begin to catch up with this. We are in this moment where the law in so many cases cannot imagine what support looks like, so we need to build it, we need to build it around people in a new way. And a third level of work that we’ve done is support people with some tools to to call for the duty to accommodate them in decision making in their own whether they’re with a bank or with a hospital or healthcare situation. In just two minutes that I’ve got, I want to just reflect just briefly on this question about medical assistance in dying, and whether that is a reflection of the right to decide or not. And this is where I think our talk and are thinking about the right to decide reaches a limit point that we have to be really, really careful. So the legislation in Canada provides for really an exception to the Criminal Code prohibition on assisted suicide. So in certain situations, the Criminal Code provides that the prohibition criminal prohibition on assisted assisted, assisted suicide stance, but it provides now with an exception in certain circumstances. The first round of exceptions was for people who were at the end of life. There’s been a constant push to expand that and through legal cases, which have been one, that’s that’s now changed. So you don’t have to be at the end of your life, you have to have a disability. So the only charter protected group, constitutionally protected group, that can now access assistance in dying when they’re not dying, are people with disabilities and people with who had a diagnosed mental health disorder to use that legal language there, it is to be expanded to that group but that’s been that’s been held off for another year, as someone noted, in the in the chat.<\/p>\n

So we’re in a situation where in the absence of supporting people, we have provided access to medical assistance in dying, and we call it choice. So we’re now actually, rather than we’re going to keep in place protective measures, coercive protective measures, and we’re going to provide you with the so called right to die to end your suffering. So we’ve got people who are in law courts and psychiatric hospitals who are requesting, and they’re already getting it, assisted assisted suicide, because without support, they could die anyway, so they’re going to be suffering so let’s give them the right to decide to die. So we’ve got to be very careful I think as we go forward that we don’t, you can see how this notion of the right to decide can be twisted in a neoliberal legal structure and a neoliberal time to be designed to have the lives of people who are some of the most marginalized and oppressed in our society appear as though their right to decide is being fulfilled. And so in the absence of actually supporting and figuring out how to support people to exercise their autonomy, we’re giving them the option to die, rather than locking them up, or we’re giving them the option to die. That’s the situation that that we’re in and that I think we have to be really cognizant of and, and cautious about. So I’m gonna leave it there I think. We have to figure out where, you can intervene at any number of of places, I guess is my is my, my kind of overall point. And we but we are at a point of a real struggle that we haven’t entirely figured out what this means, but we have to be really cautious that we don’t let the rhetoric of the right to decide dominate real struggles to ensure that people have access to support that they need.<\/p>\n","protected":false},"parent":0,"menu_order":4,"template":"","meta":{"pb_part_invisible":null,"pb_part_invisible_string":"on"},"contributor":[],"license":[],"class_list":["post-93","part","type-part","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/pressbooks\/v2\/parts\/93","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/pressbooks\/v2\/parts"}],"about":[{"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/wp\/v2\/types\/part"}],"version-history":[{"count":2,"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/pressbooks\/v2\/parts\/93\/revisions"}],"predecessor-version":[{"id":219,"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/pressbooks\/v2\/parts\/93\/revisions\/219"}],"wp:attachment":[{"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/wp\/v2\/media?parent=93"}],"wp:term":[{"taxonomy":"contributor","embeddable":true,"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/wp\/v2\/contributor?post=93"},{"taxonomy":"license","embeddable":true,"href":"https:\/\/pressbooks.library.torontomu.ca\/capacitydecisionmaking\/wp-json\/wp\/v2\/license?post=93"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}