 So I'm Sheila Wildman, I'm Associate Director of the Health Law Institute and it's my pleasure to welcome you to the 2015-16 edition of the Institute's Health Law and Policy Seminar Series. Before I introduce our speaker I want to point out the Institute's Director, Constance McIntosh. This is our first seminar of the year. I also want to make mention of, and also Barb, are you here? She just was bringing in a chair. I want to at least make mention of the irreplaceable, irrepressible administrative assistant of the Institute who makes all of this happen, including the sandwiches and the extra chairs, and she's done it for what, about 18 or 19 years of the seminar series life now, and that's Barbara Carter. So you'll see her back and forth, but Barb, thank you. The Health Law and Policy Seminar Series is sponsored by the Schulich School of Law and the CIHR training program in law, ethics, and policy. We have additional funding contributions throughout the year from other sources that will have occasion dimension from time to time. The purpose of the seminar series is to promote public deliberation and debate on pressing issues of health law and policy and disability law and policy affecting this province, the nation, and beyond. The seminar is not just about academics, talking to other academics. We bring together policy makers, social advocates and activists, along with students, professionals, and academics from across a range of disciplines to think about the problems and possibilities arising in this area of law and social life. So I hope that you, as folks with a stake in the seminar series and in health law and politics, will get in touch with me with your comments or your ideas relating to the seminars. The easiest way to get in touch is by email. I'm on the Health Law Institute website, as well as the law faculty website. Generally, again, it's Sheila Wildman. Sheila.Wildman.dal.ca, so I'd love to meet you. So today I have the honor of introducing a person that I've admired for a while from afar. As many of you know, he's a provocative, intellectual, as well as social innovator. He's got one foot planted in mind-bending social theory and the other, solidly grounded in real-world problems, in particular, social and legal problems faced by persons with significant intellectual and cognitive disabilities in and beyond Canada. So Michael Bach is executive vice president of the Canadian Association for Community Living. He's also managing director of IRIS or the Institute for Research and Development on Inclusion and Society. For over 25 years, Michael has undertaken research and development in Canada and internationally on ways to advance the full inclusion and human rights of persons with intellectual disabilities. His publications cover disability theory, policy, and practice in a range of areas including legal capacity, education, employment, and funding and delivery of community-based services. He holds a PhD in sociology and equity studies from the Ontario Institute for Studies in Education at the University of Toronto. His dissertation focused on developing a more inclusive theory of personhood on which to challenge the usual equation between intellectual disability and legal incapacity. And as many of you know, he and Lana Kursner have co-written a profoundly influential paper on the subject commissioned by the Law Commission of Ontario. It's called A New Paradigm for Protecting Autonomy in the Right to Legal Capacity. That's a multiple, but you'll quickly find it if you just google his name. Michael's been a recipient of an Open Society Foundations Fellowship for 2014-15, which he's been using to continue and extend his international comparative research on the right to legal capacity. So please join me for all that and welcoming Michael Bob. Thank you very much, Sheila, for that introduction and for the honour of being here today to launch your institute series, seminar series. I'm going to cover an awful lot of territory today, both practical, political, and mostly theoretical. In order to confront, try to think through a pretty fundamental issue that we face in our society and that we're increasingly facing with the aging of the population. And that is, how do we recognise the legal capacity to act of people with profound intellectual, cognitive, psychosocial disabilities? A fast-growing group in our population, a group who we have, our legal systems, have largely the equation, the deal, if you will, was in order to support this population, to manage this population, we'll draw a boundary between those who are legally capable and those who are not legally capable on the basis largely of mental or cognitive characteristics and we'll manage that population. And that's been a system, and I know we have lawyers and academics and also community activists in the room. That's been a boundary we've drawn in law, in policy and practice, in common law jurisdictions since about the 14th century, but it goes back to Roman law earlier. And we have in this room, as I understand it, we've got disability rights activists, we've got students, we may have government policy officials, I think there's academics, lawyers in this room. So I'm assuming that we're all together in some way on advancing the human rights, equality and justice agenda for people with disabilities and other marginalized populations. So I want to stress that I come at this, not simply as a kind of interesting theoretical exercise, but it is a fascinating theoretical exercise, but we've got a set of ideas that are embedded in law and philosophy that make this boundary incredibly difficult to unsettle. And so we've got to think really deeply about how to do that, but there's no simple formula. I want to put a proposal, if you will, on the table to think about. And it's not completely worked out and all, you know, finely sort of nuanced and completed, but I want to throw it out there and to engage in some discussion about that. And as a way of testing the ideas that come from work we've been doing in Canada, and also internationally, in particular in three sites supported by the Open Society Foundation out of the US in Zambia, Bulgaria and Colombia to advance law reform and policy reform and practice reform in the area of advancing the right to legal capacity for people with profound disabilities. So what's at stake? Let's start with what's at stake in this struggle. I mean, what's at stake is that when one loses the recognized right to legal capacity, one loses in a sense social and legal recognition of one's full personhood. And when we remove social and legal recognition, equal social and legal recognition, we know that people are vulnerable and we see all kinds of evidence of that. The law of legal capacity mobilizes a distribution of valuing recognition in society. And when we remove legal capacity from certain groups on the basis of cognitive characteristics in the name of ensuring those people are taken care of and they'll be supported, but largely so that we can maintain the integrity of contractual and other relationships, we place those people at risk. It's no surprise that people with profound disabilities face the highest rates of abuse, of victimization, of isolation, of poverty in our society because they don't actually count in the same way. And we have to get at the roots of this. And it's not that there's some grand conspiracy in place, but this way of seeing and knowing people has been put into place brick by brick over the centuries. How do we undo it so that we can see people differently? How can we unsettle this? Well, it's such a naturalized equation between mental and cognitive capacity and your recognition as a full person, especially as a full person with the legal capacity to act. When law, theory, philosophy have said, well, that's what legal capacity is. Legal capacity and mental capacity have been completely conflated in law and philosophy and we're trying to unpack them and pull them apart to see if there are different grounds on which we might recognize the full legal capacity. Are there non-cognitive grounds on which to recognize the full legal capacity of people with profound intellectual, cognitive, or psychosocial disabilities? That's the question. That's the guts of the question. Are there non-cognitive grounds on which to recognize legal capacity? We're very fortunate now from the perspective, I think of many in this room across the country around the world, we worked with the opportunity of the UN Convention on the Rights of Persons with Disabilities to get a recognition of the right to legal capacity without discrimination on the basis of disability embedded in the United Nations Convention on the Rights of Persons with Disabilities in Article 12. Canada's ratified that convention. And Article 12 basically says all persons have a right to legal capacity in all spheres of life. States parties have obligations to provide people the supports they may need to exercise their legal capacity to act. So this is not just the legal capacity to have rights. It's the legal capacity to exercise those rights in contract, in consenting to health care, in property and financial relations. And this was a pivotal article in the convention because these issues of self-determination, of autonomy, of control over one's life are so elemental to the struggles and the claims for justice and the quality of people with disabilities in this country and around the world. So we were able to get a hook in the convention in that recognition. Canada's ratified the convention. The UN Committee on the Rights of Persons with Disabilities, the Tree Body, appointed by states parties, elected through state party elections to monitor the convention to issue concluding observations on state party reports under the convention, have issued a general comment on Article 12 which has stated very clearly in the boldest of terms legal capacity cannot be equated with mental capacity. Decision making skills of a person cannot be used in any way to diminish or strip a person of legal capacity. It says people, by definition, have an inherent right to legal capacity and they say legal capacity is inherent right. It's a skill that you have by virtue of being human being and that it's an absolute elemental feature of all human beings. Okay, I mean, I think that's a great idea. I'm not entirely sure what it means and I don't know how we organize healthcare consent, contractual relations, transactions with financial institutions if that's all we have to go on. And indeed states parties around the world have looked at that general comment and sort of are scratching their heads wanting to be supportive of advancing disability rights in the world, but wondering now what do we do with this? So before kind of ascending to a kind of theoretical level to try to unpack those statements and see how we might articulate a non-cognitive ground of the right to legal capacity, I want to embed this discussion first in the realities, the politics, the struggles that have made this question so important because some who are challenging those of us who are working on this say this is a legal fiction. What do you mean? Yet they read the general comment. What are you talking about? This makes no sense and it's a group of global disability activists who get together in roundtables and are dreaming up some grand theoretical framework and getting the UN committee to publish it in their general comments and go off and do your little thing while governments can really do the hard work of how to support people and say also, and I've had this discussion with lawyers, does it matter if someone with a profound intellectual cognitive or psychosocial disability, someone with Alzheimer's or dementia have the right to legal capacity to act? They're not going to be able to exercise in the first place and they probably don't even know they have the right to legal capacity. So what are you talking about? The point is, and it goes back to one of my earliest comments, is stick the analogy of children's rights. Infants, young children, don't know about the rights they have under the convention on the rights of the child, but we know that it matters. We know that it matters that how we mobilize, how kids are known and seen and treated in the world matter to their developmental pathways, to the way they understand and see themselves, to the foundations of esteem from which they can come to recognize themselves essential to their developmental pathways through the world. It's the same for people with profound disabilities, having been involved in doing research with people over many years. People with profound disabilities who have come out of institutions, no one thinking they could live in the community, and seen profound changes simply because people, and in the best de-institutionalization initiatives, where people are given control over their own money and are supported to enter transactions for their housing and other goods and services, it forces the world to treat them as equal people. It forces the world to figure out how to engage them and see them in a way that they are full agents of their own lives. And that's what we're doing, that's why it's so important, because we know from developmental psychology that how we're seen by others matters. But we have an entire legal system and set of philosophical tenets that disable that way of viewing and knowing people with more profound disabilities. So it's that understanding from those of us in the disability rights movement for whom this has been so critically important that motivates our work. And I want to give you, and it's an aim, it's a struggle, it's a movement that's rooted in really practical places. And I want to share some of the scenes from that political struggle in this country. I could share them from some of the other countries I've been involved with, but we don't have time today and maybe in comments. I'm going to talk to one and then we'll open it up for discussion. But I want to be, I'll be very sort of selective about them. I want to start, though, with a definition of legal capacity, which I think is very interesting. And this was in 2006. We were in the middle of negotiations on the UN Convention. Our association was there, and actually our agent for our negotiations in the convention for over those three, four years is right here, Anna Macquarie, who was in New York weeks every year doing this. Anna, put your hand up, doing the negotiations. And this article was a real struggle. At state's parties we're really trying to figure out what this meant. Our movement was really putting on the table that we needed to make sure central to the convention was a right to legal capacity without discrimination on the basis of disability. So the UN Office of the High Commissioner for Human Rights did a study looking, did a basically comparative law study, looking at the meaning of legal capacity in jurisdictions in civil code and common law jurisdictions around the world. And they arrive at this very interesting, I think, definition of legal capacity. Legal capacity includes the capacity to act, the capacity and power to engage in a particular undertaking or transaction to maintain a particular status or relationship with another individual and more in general to create, modify or extinguish legal relationships. There's nothing about cognitive or mental capacity. Legal capacity is about power. It's about the power to transact. And it's about recognizing and enabling and supporting a person to have power to transact in the world. And that definition is fundamental, a fundamental building block in the approaches, the systems, the theory, the law that we're trying to advance. Because it lines up with other struggles for equality and justice. People are denied power. They're disempowered. And for people with profound disabilities, one of the biggest ways that happens is that they're denied control and power in the transactions that fundamentally affect their lives. Where they're going to live, who's going to touch them? Who else is going to be in the room with them? What kind of medical interventions are going to be done with them? What's going to happen with their property? We're not looking about self-determination to some grand journey in one's life. This is about the stuff of daily life. That's what's stripped away from people. And that's why this definition and this understanding and this struggle, and it is a struggle and I can share lots of examples about what a politically and intensely difficult struggle this is in places we're working around the world. So that's the definition. So let's keep that in mind as we go through this exercise. So let me walk through a couple of scenes in the Canadian context. What happened to my scenes? Oh, you know what? I think I missed, it's okay. I missed my other PowerPoint, but we'll just proceed. Scene, let me put this back up because I'm going to... Oh, yeah, down here. I'm not a Mac person. Oh, really? The other one? Thank you. Okay, good. Okay, we're going to go back. We'll keep the first one up. So let me take you through a couple of scenes. It's 1976. It's a group of parents in British Columbia who have gone to the Premier of British Columbia. They've had to place their kids in the Woodlands School in Coquitlam, B.C., which is a large residential institution built there in the 1800s, 19th century. And they've tried, they've sat on committees to address abuse of their kids. They're just sick and tired of their kids coming home on weekends with evidence of pretty horrific sexual and other abuse. They've tried to address the need for renovations of the facilities because the place is falling apart. And they've sort of started to just hit the wall because these are their kids, after all, and they were told that this was going to be the solution. But the gap between the kind of what they were told and what they actually see brushing across the flesh of their own kids is too much to take. And so they go to the Premier and they say, okay, we've had enough. We're going to go to the press unless you give us money to take our kids out of this facility and support them to live in the community. We want two things. We want money to be allocated to them directly and we want a planning agent, a broker that's accountable to us to figure out how to broker supports in the community because the reason they're in the facility in the first place is that the group home and other community service providers that you fund refuse to take our kids, which is why we had to place them in this God-awful place in the first place. The Premier, it was Bill van der Zem. I don't know if anybody remembers Bill van der Zem. It was like, God, he was so kind of reasonable in comparison to Donald Trump, what do you think? But at the time, at the time, at the time, you went, wow. So he said, no, no, no, no, we're going to, you know, I'm going to put a million dollars into renovating. It's going to look fabulous, you know, whatever. New pool, I'm sure that was probably on the agenda. It's always a swimming pool, isn't it? So they said, no, thanks, we're not going down that path. So he finally agrees and the parents launch what was called the Community Living Society in 1979 to put their plan in place and they started taking their kids out and that was the beginning of the institutionalization in Canada. It was led by families. It was started by families who had a different vision for their kids and their kids couldn't speak for themselves. Their parents, though, had a different story, a different narrative about who their kids were than the institution and the various medical reports. Okay, scene two, 1982. A landmark judgment comes down in Ontario and many may know this case, the Clark versus Clark case. And what's at issue is a young man, Justin Clark, who was placed in the Rita Regional Center in Smith Falls, Ontario when he was just two years old in the 60s and he had been diagnosed with cerebral palsy, had hydrocephalus, mental retardation. But he had developed relationships with staff and he wanted to move out of the facility and live in the community. And he used a bliss symbolic board, communicated that way and the staff supported him to go to the medical officer of the facility to get a declaration that he was capable to make the decision to move out. His father found out and took out an application to have him declared incompetent to make the decision to move out of the facility. Because he was scared. I mean, they didn't have a relationship. They hadn't really kept up a relationship with the son, but they were scared. They had heard horror stories about what happened to people with disabilities, didn't know how is this going to work. He obviously needed significant supports. So comes known as the Clark versus Clark case and both parties get expert witnesses and their evidence. And Justice Matheson, having heard the evidence, so the father calls forward psychometrists and psychologists who just grow the file, mental age of three, not able to do this, that and the other thing and all the kind of codes and categories that would come from those kinds of functional assessments. The Justin Clark calls staff who would become friends of his in the institution who knew him as a young man, who had wanted to live in the community for years, told stories about him going to the chapel when he had heard his uncle died to mourn, was able to, it was a fascinating testimony of how he played with the psychometrists in the assessment tests. They saw how he basically played with them, resisted questions, messed things up the best he could, and they could kind of give a whole other story of what actually happened in the assessment process. And so the judge said, right, so my job is to decide whether he's competent or incompetent. What's the basis on which I can make this decision? I have two really different accounts, two really different ways of making knowledge about this man, Justin Clark. In one set of accounts he emerges as this person who clearly is very diminished, has very limited capacities. These other accounts, though, are all subjectified accounts. They all know him as a person. And basically he said, all I have to go on, I mean he didn't use the word, but it was an epistemological question. Whose ways of making knowledge can I trust? Whose ways of making knowledge make most sense here? Because they're both valid in their own disciplines. But he said, ultimately I trust personal knowledge and that was the category he used. That personal knowledge seems to reveal this person as a person who makes sense of the world and has things he wants to do, and on that basis he was declared competent. Scene three, 1991, legislation is being developed in Ontario, in part in response to the Mental Incompetency Act, partly in response to the Justin Clark case, but also because of the equality rights provisions that come into effect in 1985. And there was of the Charter, and there was a concern that basically the law needed a major overhaul. It's the same year, so that law reform exercise is under way. It's the same year that self-advocates with intellectual disabilities are forming across Canada and at their first annual general meeting in Toronto in 1991, their first resolution at their first AGM goes as follows. Because guardianship and orders of supervision take away the rights of individuals, therefore be it resolved that people first of Canada oppose all legislation putting people under these acts. So in response our association develops a task force and alternatives to guardianship, pull legal experts, parents, people with disabilities together, and come up with a framework for what an alternative could look like. And we call it a framework for supported decision making, which is now being worked on in various parts of the world. So what the set of proposals, actually we don't quite get the proposals worked out until a little bit later, but we start with a basic set of principles, and I was fortunate enough to be on that task force. And the task force defines the core principles in the following ways. All human beings by nature have a will and can make decisions. People who have an intellectual disability may express these decisions in nontraditional ways. Any legal system which deprives individuals of their right to be supported in their decision making and which appoints substitute decision makers based on tests of competency makes people vulnerable and deprives them not only of the right to self-determination but also of other rights. We lay out a way that we think this could happen which is basically providing for people to be appointed as representatives to assist people to make their decisions, even for people with more significant disabilities where those representatives would act as interpreters of those individuals just like Justin Clark had assistants around him that helped him with his bliss symbol export and wanted the legislation to provide recognition for those representatives and an appointment process that would make that possible. The government, it was an NDP government, came out with the draft bill. It was in committee. None of the changes that we had proposed were in the committee. People first of Canada threatened, issued a press release and threatened to camp out. This was Bob Ray days. Bob Ray had a lot of other things to deal with. But they threatened to camp out on the grounds of the legislature unless the law was changed to recognize the calls from our coalition for alternatives. So immediately finally there was some action but the government couldn't go as far. I remember in the hallways debating with the drafter from the Attorney General's office and things were definitely heating up and it was very interesting. Stephen Fram is past now but a really brilliant guy and he said, and it's in his report, this is a necessary evil. If we extend this in ways that you're proposing we're going to need in order to protect people who might be vulnerable, surveillance in the bedrooms of people across the province. He said it's a necessary evil. We need to draw the boundary in order to protect the liberty of others. But that's the deal that's been struck throughout the centuries. So the government couldn't go that far. The closest they could go was to put a prohibition in law on court-appointed guardianship stipulating that court would not appoint, shall not appoint a guardian if it was satisfied that the need for decisions could be made in another way. Nor would a person need to be declared incapable if that was the case. So it gave us a bit of a bulwark without providing us the means for appointing representatives and supporters. Okay, scene four. I'm going to be through my scenes before I take you on this turgid and dense journey through philosophy of law and theory as I, as a very untutored philosopher, read it. But scene four is important. It's 2006 and we've gotten a ruling in the Gray versus Ontario case. So post-91 there is a movement to keep institutional closure going. The minister responsible makes an announcement, I think in like 2002, that the remaining large facilities would close. The process is under, and it's a very, you know, person-centered planning process, community services development, et cetera. But a group of parents, just like Justin Clark's father, was concerned about their sons and daughters, brothers, sisters moving. They go to court to say that the minister didn't have the authority to close these facilities, that these facilities were people's homes. So our Ontario association, which is a family-based association, like the Nova Scotia Association for community living, go to court to challenge the parents to say, no, in fact, the minister does have the authority and moreover people should be supported to live in the community. And our association is involved, and I support it as an expert witness, and we put together a factum that lays out supported decision-making and why this is an alternative way to make decisions, you know, in addition to all the reasons why institutions would close. And our arguments, there was some very interesting and challenging cross-examination. It was fun. One really had to be on one's feet that day. But ultimately we won the day. And the minister found, the court found that the minister did have the authority to close the institution and that the supported decision-making process that was put in place was a valid decision-making process. It didn't require a finding of incapacity for even those with the most significant intellectual disabilities. So it's very interesting. No individual capacity assessment done of individuals. What the court said, basically they would vacate their parent's patriotic jurisdiction, which is the court's ultimate responsibility to care for those unable to care for themselves, and said, we vacate it basically, recognizing that the state has put in place the person-centered planning processes that will enable these people, even though they may not meet capacity tests otherwise, to be supported to make decisions to live in the community. And to this day, those people are not under guardianship because the court respected the planning process. So let's hold on to that because I'm going to come back to it. So in short, or maybe it's a little longer than short, it's not been an abstract exercise. This isn't a theoretical exercise of a few people sitting around trying to figure out some interesting theoretical thing about how we could find a non-cognitive ground of disability. This has been driven first by parents who had kids with significant disabilities and then by people first, people with intellectual disabilities themselves are leading for the last 91, 2011, I mean, 25 years. This has been a driving agenda. So Article 12 gives us a promise. It gives us a sense of possibility. It recognizes our aspirations to delink mental capacity and legal capacity. It declares a non-cognitive ground of legal capacity in recognition of will and preferences, and that's basically what Article 12 does in the general comment, reaffirms that that instead of mental capacity, the law needs to respect people's will and preferences with no requirement to meet cognitive tests for that purpose. So that's the promise, but it lacks a theory. It lacks a theory. What does that mean to ground legal capacity on the will and preferences of a person with a profound intellectual disability? I want to I want to spend the next few minutes of my talk laying out some steps for building a theory that I think might be able to do this or that I'm developing in collaboration with lots of others. And I want to suggest kind of five key steps to building that theory. So the first one is to begin with intentional action rather than mental capacity. So the first step in building a non-cognitive ground that would respect will and preferences is to begin with intentional action, which is a category in philosophy rather than mental capacity. So, which is about going to the core of what's the decision-making process in the first place. Paul Recourt, 20th century moral philosopher, defines capacity or agency as the ability to do something. And that ability in the first place, he says, or most importantly, most fundamentally is to be designated by others as a first-person speaker. You can't be an agent if others don't see you as a speaker. To be designated as a speaker is the first step. So, which implies, of course, that you need hearers who hear my voice, who hear my speech. So, right from the very beginning, our capacity to be an agent is an interdependent quality. I can't be a speaker in a vacuum. My speech needs a hearer. And so that's the first, that's elemental to what capacity and to what agency is all about. According to Paul Recourt and Hannah, a rent picks up this theme and we don't have time to go there. So, what you also require, though, is a theory of action to say, it's one thing to say, you speak this and that certain actions then follow from your speech. So we need a theory of action that attaches consequences to me being an author, to me being a speaker. So that we can say, and this is pretty basic to the philosophy of law, but we can say, well, yeah, those things happened and those are Michael's responsibility or those things happened and those things aren't Michael's responsibility. How do we attach consequences to an agent is a pretty fundamental question. So theories of action and human agency have been the subject of lots of philosophical debate and I want to turn to one early in the 20th, not early, mid-20th century who takes this question up, which is how do we, if we can designate Michael as a speaker, we can hear his gesture as speech, how do we understand the nature of what that action is and what follows from that speech. So in building up a theory of intention, Elizabeth Anscombe, Irish philosopher, uses the example of husband, it's the 1950s she's writing, husband going to the store to buy groceries, gets the list of groceries from his wife and on the list is to buy butter. Goes off to the store and in the scene we have an observer, researcher, recorder who's observing what happens and what he sees is that the husband ends up buying margarine instead of butter. Okay, how do we make sense of this? And what does the recorder do? Does the recorder write down, he made a mistake? What are the possible outcomes of this story? He could have made a mistake, it could have been packaged the same way. Maybe they ran out of butter at the store, maybe he decided he wanted margarine instead of butter in the first place. So you can answer the question why he did that with an intention that serves as a reason for his action. So what Anscombe says is that intentional action is behavior under some description. So the recorder could have described that behavior as a mistake or as an intentional action. And this is what people with cognitive disabilities face all the time, that their behaviors are not under descriptions as intentional action. Their behaviors are under descriptions as deficits, as inabilities, as pathologies. And so that's the first step. We have others who can recognize people with cognitive disabilities as speakers in their own right because of the nature of their gesture. If we trust there the ways they interpret those gestures as speech in the first place and if we can have descriptions of behavior as intentional action. So I want to just hold that thought and we're going to continue to build upon it. Intentional action isn't sufficient on its own for grounding legal agency because actions don't... I mean, people have a range of actions. People have certain intentions to do things in one moment, different intentions to do things in a different moment. And we have to ask ourselves to which intentions do we attach legal capacity and legal agency? Because Michael wants to do this at this moment. Do we give this legal effect and transactions that would be needed when he seems to change his mind in the next? So the second step, once we've shifted to intentional behavior as the ground, a potential ground or the first ground of agency, if you will, rather than cognitive capacity, is to complement that intentional action with what philosopher Michael Bratman, and Stanford philosopher has called planning agency. Because we demonstrate purpose or intentional action under some description as human beings, but all kinds of beings demonstrate intentional action. And we're seeing that in advances in neuroscience and neurobiology, that even at the eukaryotic cellular level, cells are intentional. So intentionality is intrinsic to our state of being. And in fact, what we're seeing in neurobiology is that intentional action doesn't reside so much in the cortical regions of the brain, in executive function, but it resides intentional volitional behavior resides in much deeper, older parts of the brain. And so emotional response, emergent consciousness, reaction and response in tending in one direction as opposed to other aren't executive functions. They're functions that are rooted much more basically in our very, very being. They don't reside, don't rely or reside in our cognitive regions, cortical regions, cognitive faculties. Antonio de Massio, I don't know if anyone's read a great little book, Self Comes to Mind. He sort of popularizes this science. And he writes, the condition that, and he's talking here about the studies of infants and children with a severe intellectual disability where the cerebral cortical region is significantly compromised or damaged, and yet you can under some description see all kinds of intentional behavior. He said that reality, that condition, gives the lie to the claim that sentience, feelings and emotions arise only out of the cerebral cortex. That cannot possibly be the case. Yet we built an entire system in law of legal capacity on the basis, on the foundation of the cortical region. When in fact what drives us, what makes us human, what gives us desire is at a much more basic level. So, how do we get, so if intentionality and goal making are so embedded, so fundamental to our being, how do we get from intention as this kind of force of nature to recognition of human beings as autonomous subjects who act in ways that should demand respect from others? And Michael Bratman says that planning agency is the link. And what he says is that intentional action entails, to a greater or lesser extent, plans. And in that intentional action is directed to an object which expresses a goal or end motivating the action. And he writes, according to the planning theory of agency, intentions of individuals are plan states. They are embedded in forms of planning central to our internally organized, temporarily extended agency and to our associated abilities to achieve complex goals across time, especially given our cognitive limitations. So, what makes, what roots agency is the ability to plan, which is most fundamentally having a desire and intention to go in a certain direction. And so, and the starting point is that our plans exceed our cognitive grasp of all the things that need to be done to carry out those plans and execute them in the first place. As many of us know, if you're trying to plan your financial future, which looks dismal any one day, it's an incredibly complex thing to do. We don't have the capacity to do it. So, there's a number of philosophers that are beginning to work with this. And Scott Shapiro, who's a philosopher of law at Yale, applies the planning theory to law. Because he says basically, what Shapiro says is that law is fundamentally, and he's a positivist, is rules for making plans. And so, he uses the example, he works it up of a plan to make dinner, which is the goal or intention to have dinner tonight. And so, Shapiro works up this plan, he says, okay, right, so we want to have dinner tonight. Maybe I'll have dinner with a friend. Well, what are we going to have to eat? Should we share the cooking? What should I, okay, so you'll pick up, you know, you'll pick up whatever we're going to make for dinner. I'll pick up dessert, and then I have to figure out how am I going to get from the classroom this afternoon out to find, actually I do want to find a really good bakery if anybody has, because I've got to take pie for dessert tonight. So then, even that, imagine I've got to find out where the best bakery in town is, which way I'm going to drive, what time, how the transportation is going to go given the time, and then there are, the opportunity to execute those plans is going to depend on the transportation system, how transportation plans have been laid out. I'm going to have to decide which direction to walk down the aisles in the grocery store. He gets really, really practical. His point is, and Bratman's point is, that you start with an overall intention, desire to have dinner tonight, and then you have to make all kinds of nested plans in order to realize those plans. And the question it raises, and both of them raise in effect is, and both of them say there's no way that we can do all the nested planning and execute all those nested plans on our own. But what's most important is that I had a desire, I had a plan. Yeah, I didn't have the cognitive capacities to execute all the plans and all the transportation systems and all the parameters that's going to make it possible for me to have dinner tonight. Can you imagine? Actually, I want to do a little exercise. How do we, is this light here? How do I do? Is this the big one? Okay. Oh, we don't want that one. Okay, let's watch very closely. Watch, watch closely. For those who may not be able to see me at this point, I'm raising my hand. Oh, this is part of the experiment. Okay. What happened? What did I do? Wait a sec, wait a sec. Watch very closely. Watch the hand. Right, and what did I actually do? To these plastic buttons on this wall. I moved my hand to plastic buttons on the wall. I wanted the lights to go on. Can you imagine all the arrangements are in place that made that possible? The contracts between this university and the city and the power authorities that made that, like all the transactions. But all I did was move my hand and put it on plastic buttons on a wall. But I did want the lights to go on. But all the nested plans and execution of contracts to make all of that happen. None of us would have the cognitive capacity to figure out all of that, right? But I wanted the lights on. So, Bratman works up what he calls a modest theory of the will. Which he described, again, we're trying to get at the theory of the will that can ground respectful legal agency for people who have significant cognitive limitations in the UN Convention. The comment tells us that you have to respect the will and preferences of the person. So, what he works up, he says, A modest theory of the will has three basic components. That the overall intention and nested plans to achieve it are internally consistent with one's expressed desires and preferences and their ordering between preferences and desires. There's a means that ends correspondent, correspondence between what I want to do and the nested plans that get in place to give it execution. So, we can't say, like you said you want to do this, but you're doing all these things that clearly are undermining what you said or are not going to get you to where you want to go. And that there's a relative stability of the intentions and plans over time. That they matter enough to bind the subject in some way. And this theory of the will, I think, and Bratman draws on a very interesting American philosopher, Harry Frankfurt, who talks about higher order, first and second order theory of the will. So that we are all conflicted beings. We all have all kinds of conflicting desires, but we arrive at places which are our first order preferences, but we arrive at places where we have a sense that this is what matters most. And so I'm going to go in this direction, even though I'm feeling torn, but actually what's most important to me is to go in this direction. And Bratman builds on that to arrive at this theory of the will. And what's important, I think, for the work that we want to do together is... I mean, people will throw tough cases at you around people with psychiatric disabilities who may be in certain states of mind and want certain things to happen. And when they're in other states of mind, you know, wouldn't want those things to happen. And isn't some system of substitute decision-making and involuntary committal as may be needed necessary to support those people. And so what this theory of the will allows us to do is to interpret... And while all behavior is intentional, is to begin to interpret intentional behaviors that speak to those higher-order expressions of will. Those expressions of intention and desire that bind a subject over time, even though they may be doing things in a particular moment that seem in contradiction. What makes us agents is that we can put together a coherent story or we can have people around us who can put together a coherent story that allow us to be seen as an agent as a first-person speaker through time. That's what's most fundamental. So I've identified three capacities so far that constitute a capable subject. And I'm going to close this, even though I could go on for a much longer time. The capacity to be designated as a speaker, as an author in ways that enable others to answer the question, who are you? Who is she or he? We can... When the judge in the Justin Clark case asked the question of his expert with witnesses, who is Justin, they could provide a coherent story about who he is because they had witnessed his intentional action and behavior through time. And second, the capacity to act intentionally and to act more clearly, I think, to act in ways that others can describe as intentional behavior. Under some description. And third is the capacity to plan, which means at a minimum to act intentionally in ways over time that indicate to others a planned state or the expression of a higher-order goal which serves as the basis for others to design and execute the nested plans required for its realization. I just had to put my hand on plastic buttons and there were series of agreements in place that I know nothing about, nor do I need to know anything about in order for the lights to come on. And in simple terms, that is all that we're asking for people with profound intellectual disabilities, that their gestures, their movements through space and time have the opportunity that we give legal status to a system of interpretation around those individuals that would enable certain people to be recognized as those who could describe that behavior as intentional and be given the authority to develop and execute the nested plans that would follow. That's all we're asking. That's what this system is asking, that we allow a group of people which we call decision-making supporters to be given the status to be recognized as second-person hearers, if you will, if we go back to our core, the status to provide an interpretation and description of my behavior as intentional and as the basis of a plan that they will develop the various nested plans to execute. I don't have time to go into the... There's more. I think that's the guts of it. What we've been developing, and where Lana Kursner and I are working on another paper for the Law Commission has taken way more time and I think the Law Commission is now... You know, I'm not sure we'll... Well, it's going to be out there soon. Is basically a set of proposals for what we're calling statutory supported decision-making. I think one of the things that's happening with supported decision-making is that it's being applied to people who may need a little assistance to make their decisions, but basically they can act legally independently. They can appreciate and understand the nature of consequences on their own and they may need a little support to assist them. In Justin Clark's case, he was recognized as fully legally competent on his own and we use that and are taking that a step further in our work, but we don't want to support a decision-making to stop there. People who need a little assistance to communicate or to be understood by others, but basically we still presume they're able to make decisions on their own because they meet cognitive capacity tests. What we're trying to do is provide a statutory framework and be guided... I was going to go into a long discussion about the law of agency, but we don't have time for that. Basically the proposal is to do a statutory reform of the law of agency and the law of agency is what provides for us to appoint representatives, attorneys to act for us in any number of ways. A statutory reform of the law of agency that would provide for people with significant disabilities to appoint a representative in two ways. A lower threshold to lower the cognitive threshold to appoint a representative to act for you, which would be given the capacity to carry out all those nested plans, as we say, or that would provide for others who are in a position to interpret my gesture and behavior as intentional under some description to be recognized and given status as interpreters of my gestures sufficient to ground the various kinds of plans and transactions that would be needed. So it's a very clear and pragmatic statutory proposal. The rest of us get to appoint agents to carry out our transactions, but it's done on the basis that we have the cognitive capacity to do it. The kind of directions for a theory of will and preference that I've been laying out here is meant to provide the philosophical foundations for statutory reform to the law of agency, to basically lower the thresholds by which we can appoint representatives, and this is the other part of it, is that I should, as a principal, so under law of agency I remain a principal, that my agents could apply to be appointed on the basis that, let's go back to the Clark case, they have personal knowledge of me. They're in a position to interpret what my behaviors mean. They're in a position to interpret my behavior as intentional under some description which becomes the foundation for them to make the various nested plans required to execute my will into action. So that's where we're headed with this thing. I want to conclude by saying it's really interesting, and people with intellectual disabilities and their families and their advocates and people who work in that sector in this room know this only too well. People in our sector, we're given actually the opportunity to plan. Individual education plans, person-centered planning under the disability services program. We make so many plans. It's all about planning in the disability services sector. Those plans are not given authority. And with Scott Shapiro, and that's the problem, they actually aren't the basis of law. So people's legal capacity is removed, but they're given person-centered planning. You know all the person-centered planning you want, but the system doesn't actually accord itself with the plans that you make. And Shapiro's point, ultimately, a fascinating book called Legality, is that the law... You think about the Constitution, you think about the Charter. You roll all this way up, all this way up. Laws are the rules for planning. That's what laws are. They're the rules for planning. And they're the rules by which certain plans and planners get recognized. People with intellectual disabilities and their supporters, their plans don't actually get recognized. It's like a lot of busy work. We're told to make plans, but the plans aren't given authority. They're not given resources. They don't actually matter. So I think the planning theory of law, which would actually maintain our agency, is something that we can build upon. I'll leave it there. Sure. Yes. I'm just wondering if you could speak to some of the steps in which maybe more than this the intention or action, specifically the Charter versus Canada case and what people are doing around supporting the things they're making with that. Part of the arguments from my understanding was that in order to have that consent of having that assistance, you have to really understand the foundational idea of what you're consenting to. So is it a matter of actually needing to know what goes on behind turning the light on more than just the intention of the light? Thank you. Really important question. We're in the midst of it. In our proposals, we draw very clear, instead of the boundary between capacity and incapacity, we propose, and others are challenging this, we propose that you still need boundaries. The presumption isn't presumption of capacity, the presumption is that you can exercise your legal capacity in an independent way, because I think that's still an important boundary, especially because there are decisions like that one that have an impact fundamentally on our physical and psychic integrity. So we would say that you need to meet the test of legal independence, which means you understand and appreciate the nature and consequences of this action, with supports and accommodations as may be required in order to carry this out. So it's not like we're saying throw all the boundaries out the door, and people with profound disability should be able to have their supporters go to a physician and say, you know, Michael, we're sure, and we're the ones that have been designated as his interpreters, we can tell his story, we understand what he wants to die, and we'd like the assistance. So absolutely you need to draw the line of decisions like that on sterilization, some would suggest on things like cochlear implants, sexual reassignment surgery. I mean, there are a number of decisions that, and we were in a debate with the blood services of Canada, even on giving blood, we won't go far down that. That said, we're going to lose ultimately, because it won't be too long that there'll be a claim that says, okay, so someone meets the condition, meets the requirement in Carter, a previous and irremediable condition that causes enduring suffering and tolerable to the individual, and under the equality rights guarantee of the charter, you're telling me that the benefit that that person gets in the form of physician assisted death is to be denied to someone else who we can see obviously meets the same conditions, simply because they don't meet your cognitive test? I mean, it's going to be challenged, and I expect we'll lose it, which is why we're, I mean, we're, this will take us in a whole other direction, which I'll pause, but we're putting out proposals. No, I mean, we're there, the landscape's changing Canada, so our association is, it'll be, well, it'll be made public, it'll be submitted to the panels next week and made publicly a week after, or a proposal for access to try and deal with that, to try and deal with that issue, but that's where we still need that boundary of what we call legal independence that you'd have to hold, and people would still challenge it, like they'd say, some might, I might want to say, no, I am legally independent to make this decision, physician would say, sorry, I don't think you can give me informed consent independently, you need, Michael, go and get yourself a decision-making supporter, so yeah, I'd be at a consent and capacity tribunal, and I'd be saying I'm independent of the physician, and then we'd have to battle it out to see what, on what side of the boundary I come, but if the tribunal tells me you can't act independently, it's not like I don't have legal capacity, it's just that I'm going to be required to have a supporter or an agent of some kind to enter into all those kinds of executory transactions that I need to have, that I would need to have in place to decide my capacity. Other thoughts, reactions? Yeah? Yeah, I think I'm just wondering where I'm at. But the statutory recommendation, the line where you withdraw it and the person that's eligible for that, it seems to me that it's key to understanding the consequences of your actions. Right. And that's really the line that's key for a lot of people when we talk about therapy. A lot of what you're saying just seems to me to be happy to be the way it is. Well, it's... We don't have a base... What's our basis for saying that those who can't act legally independently have legal capacity to execute contracts if they don't have the cognitive... if they don't meet the cognitive tests usually associated with legal independence? What's our basis for saying they still have legal capacity? That's the nub of the problem. It's not enough, I don't think, as the UN Committee has said in its general comment, to say, well, you just have to respect their will and preferences. Okay, well, we don't actually know what they are in Michael's case because he's been isolated in the facility. Like, what does it mean to say you just have to act on Michael's will and preferences when he himself doesn't understand and appreciate the nature and consequences of his actions by himself? That's the nub of the problem. We need to provide a ground on which my legal capacity can still be recognized. That's what I think we need to work out. Is that why we need to be able to understand the actions and the consequences of the actions? Not only if I'm going to maintain my status as being legally independent. So if I can't do that the option is that I have around me a person or two persons who can interpret my behavior and my plans and my desires to others and help translate them as an attorney would a power of attorney arrangement or an agent a representative translate those into the necessary plans to give what I want to do. Michael doesn't want to live in this place anymore and we know that he doesn't because of how he's reacting to people who come near him and the people living. We know he doesn't want to live here anymore. So my behavior is intentional under their description and that becomes the basis of a plan on which my designated supporters can assist me to make the plans to move out of the facility. All I've done in that situation is I put my hands on white buttons here. I would be doing something else in my home that would indicate I don't want to be here. I don't need to know all the contracts and arrangements that would get me into leases and support arrangements. All that my supporters know is that Michael is doing something that indicates he's hurting when these people are around him. That should be enough for my legal capacity to be maintained. But we don't have a legal system in which that is enough and that's the injustice of the system that we've got. Sure, they have absolutely they do and there are some great guardians who do that. The problem is that my legal recognition as a full legal agent has been removed and that's a problem because how the world sees and knows me then is not as a full legal agent. That's a problem and we know the consequences because people are in diminished moral and legal and social statuses as a result which is why the rates of violence victimization are so high for this group. They don't count as much. No matter how good the guardian is. Which is also why we propose that it's no longer a best interest test. The test for the duty of the agent is the best interpretation of my will and preferences in the circumstances. That we're talking about an interpretive universe and we can interpret his behavior differently. So the test that we hold the agents to in our decision making supporters to is their duty to arrive at the best interpretation of my will and preference in the circumstance. Because interpretations can be challenged and they should be challenged. So it's not, there isn't some absolute best interest. They may arrive at the same thing and there are good best interest tests out there in statutes. But there's such a legacy of paternalism around the best interest test that we need to change the language. And if ultimately what the basis of this is that I require others to interpret my behavior as intentional and provide a description for that. Then we should accept that it's an interpretive act. That interpretive act should be able to be challengeable by others. And our goal should be to arrive at the best interpretation of what my gesture means in the circumstances. And the kinds of plans and transactions should direct going forward. I think somebody else had a comment. The test for admission is that there is personal knowledge. A demonstrated trusting relationship and personal knowledge. Because that's the basis of being able to do adequate interpretation. That's what we've got. We've got that now. We've got those risks under guardianship, under parliament. Novel's social law commission has just come out with its power of attorney report that talks about the oversight needed to address those issues. That's the reality. But there would be statutory duties of the decision making supporters to abide by all those set of principles. They're statutorily bound. If they violate their duties, then they can be called into question. Yeah? Do you have the best interest of your child at stake? Because a child is more vulnerable than a guardian not being exploited. Because then their friends can use them in the means of whether it be for example, dealing with judges. So they're more vulnerable than a guardian. So until we change the whole system we have to have those vehicles in place. Otherwise we are not protecting the population. I don't want to call it paternalism. We can call it under guardianship conditions, guardians of supported decisions. If you're on one side of anything, someone who's in the other side- Absolutely. I totally agree. But I'm not talking about practice. I'm talking about what's in the law and the ways in which the law mobilizes how people are seen. Other groups who have been marginalized would not simply not accept the right to vote or the right to autonomy because we had a really good system in place to protect them and support them. It's not enough because how the law sees us mobilizes how the rest of society sees us. It's not enough. So let's take the great practices from guardians now who are doing really good work and you draw from those practices, absolutely, but let's give people equal legal status. That's what we're after. Yes. Because what I understand is that legal capacities inherent who can't be inflated still need to meet capacity tasks which is understanding the nature and consequences of their actions which in law is meant to be capacity. So I just want to remind you what I'm going to say. The law establishes certain mental capacity criterion for the recognition of legal capacity. You need to be able to understand the nature and consequences of your actions. And that's the test that the Supreme Court and Carter adopted. People have to have decisional capacity. They didn't go into it in detail but that's the test they were using. My only point was that we need to, in that equation, legal capacity and mental capacity are conflated. If we pull them apart, right, so the test for legal independence as one way of exercising legal capacity is yeah, you understand the nature consequences of your decisions. That's the test for legal independence and that's the test that Carter lays out very clearly. The test for statutory supported decision making, right, if I don't meet that test is that I would have in place at least one other person who has an ability to understand, interpret and communicate my will and preferences as the basis for planning and executing actions. So that becomes the test. There has to be at least one other person who can see me as an author of my actions who can give a description of my behavior as intentional. Yeah. Oh, I'm sorry. Yeah, yeah. Okay, I think, yeah. Why is it all for a policy standpoint, what's the biggest obstacle in the order of action? I think the biggest obstacle is this idea that legal capacity and mental capacity are all bound up. We actually have the proposals in place. We put a set of proposals out to the Law Commission of Ontario, which is doing another round of legislative reform and they can't get their heads around it. They're not gonna accept it. So the work is done. Yeah, the laws, I mean this idea of what it means to be an agent is so embedded in the philosophy of law. It's in our statute. So I think that's why I'm really intrigued by, actually I spent some time with Scott Shapiro at Yale and he said, one of the, in implying his theory, he said, maybe what we need to think about is planning prosthetics. That what people need are planning prosthetics. Like if I didn't have, people use chairs, they have lymph prosthetics or if they don't have a particular limb, what people need in drawing on that theory of planning is that I just need a planning prosthesis. Someone who can help me interpret for the world what it is that I want and then do all the work associated with plans and executing them. But this, it does go right to some of our basic assumptions. So we just keep plying along and seeing what we can do. Part of the work though, absolutely a statutory reform work, but some of this other work is very much about rethinking some of the basic foundations. So thank you for the opportunity to be here today. And I enjoyed it very much. One of the things that I find so valuable in his work is that he pushes us to move from a place where what we see is incapacity to a place where we see the possibility of support. And that itself is, I think, a really valuable question to keep pushing up and asking us. So before I thank Michael a last time, I want to mention our next seminar. It's coming up Friday, October 30th, right before Halloween. It's called Punishing Women's Unruly Bodies, pregnancy, childbirth and mother-baby separation under conditions of imprisonment. And we have Julie Galata, who is a prisoner of rights advocate. Some of you would have heard her story perhaps. She was in Ontario in remand, lock up and gave birth for baby died a year later. Emma Halpern with the Elizabeth Bride Society of Kate Bratton. And then if you know her through her work with the Barrister Society, we'll also be talking on a panel as a live. So that's October 30th. So back to Michael. Michael, I'm so grateful that you could make a stop on your world tour of legal capacity and speak to us here in Halifax. It is, I just have to say, it's fascinating and extraordinary that we in Halifax happen to have a number of advocates who are involved in the CRPD, who are central to the disability rights movement. You met Anna Macquarie a minute ago, Steve Estee, who's sitting over there, who was an officer with, which organization was he with? Human Rights Council of Canadians with Disabilities. Council of Canadians with Disabilities now and has done all kinds of great work in the past. So we're very lucky here in Halifax and that's part of why we managed to bring Michael in. So please join me in thanking Michael for a terrific thought for both of you. Thank you.