How wide is the net cast by the emerging shift and challenge to the traditional approach to legal capacity law, in terms of who is seen as a person capable of exercising and enjoying the right to legal capacity, and who is not? If jurisprudence cautions against “[u]nwarranted findings of [mental] incapacity,” how far has the law re-drawn the boundary between those considered capable and those considered incapable? And, in light of Article 12 of the CRPD, if a finding of legal incapacity on the basis of disability constitutes discrimination, how do we conceptualize full autonomy and exercise of legal capacity for those with significant and profound disabilities whose forms of communication may be discernible, at best, to only a very few individuals?
Many people with significant intellectual, cognitive and/or psychosocial disabilities are not able to meet the usual test of mental or cognitive capacity to retain their right to autonomy and legal capacity – i.e. the understand and appreciate test. Indeed, it can be argued that many people without disabilities do not meet this test, if one considers the complex health procedures which a patient may need to decide on, or the complex legal and financial transactions which people authorize everyday with their signatures. Nonetheless, this is the test that gets triggered when others question the mental capacity of a person with an intellectual disability to make a health care decision or sign a lease agreement for an apartment, or even open a bank account.
But is this the only test of what it means to be a person who exercises legal capacity? In this section, we elaborate a more inclusive definition of decision-making abilities that can provide a foundation for recognizing and respecting persons who exercise and enjoy legal capacity. Quinn suggests that a more inclusive concept of personhood than that defined by the criteria of rationality so pervasive in legal incapacity law is
foundational to the debate about the paradigm shift of Article 12. I leave to one side the debate about when a person becomes a person and when a person ceases to be a person. The real debate concerns what are the essential indicia of personhood – the criteria by which we can ascribe personhood. Are there such criteria? What are they?
We suggest how to define the basic criteria in this section.
A. Expression of Will and/or Intention as Human Agency
Rather than focus on tests of mental capacity, we think it helpful to ask ‘what are the actual tests of decision-making ability that most people have to demonstrate in their day-to-day affairs?’ Most discussions of contract law, for example, in any number of case law books, or even the authoritative Restatement (Second) of Contract Law published by the American Law Institute, and also that of the ‘Principles of European Contract Law’ of the European Commission, define ‘intention’ as a necessary component of entering into a contract.
This idea that intention is the basis of human action and reflects human agency is consistent also with the theory of human action that analytic philosophy and the philosophy of law turn attention to, with the question: How are we to determine that a particular set of events in which a human being was involved represents intentional action on the part of a human agent to whom decisions and consequences can be attributed? While this area of analytic and legal philosophy has a long and rich tradition, there is substantial agreement around the set of ideas that what constitutes human agency is action which is informed by a person’s will and/or intention, which are motivated by a person’s beliefs and/or values about things they want or don’t want. How we know whether action is intentional lies in how we describe the actions of others and their consequences, as intentional or willful or not.
In formulating a minimum threshold of decision-making ability and human agency below, we refer to both ‘intention’ and ‘will’ as their foundation. We distinguish these terms in the following way. Intention refers to an expressed desire, an articulated goal or objective, or a plan which has been communicated. Intention is about choosing ‘ends’ to pursue. As Jean-Paul Sartre has written “intention makes itself be by choosing the end which makes it known.” From chosen ends, intentions can be discerned which give clear direction to others in guiding decision making. However, some people with significant intellectual and cognitive disabilities may not be able to formulate or communicate an intention in this sense, as a clear ‘end’ to which action or behavior is directed, or at least such behavior may not be evident to others. Nonetheless, what may be evident is the person’s ‘will’ to live, to avoid pain, to seek pleasure, safety, or security. ‘Will’ in this sense refers to a faculty of the mind and is usually evidenced in the range of choices by which a person is seen to operate. It’s expression represents a decision – to live, seek safety, avoid pain, etc. The range of the will can be extremely limited, it can develop and grow over time with experience, but nonetheless it can be pointed to and described by others who know the person well; who know their history and particular way of being in the world and communicating with others.
A large body of research points to both the unexpected abilities of people with profound and multiple disabilities to make decisions when presented with choices in meaningful ways; and to the ‘pre-intentional’ and behavioural forms of communication which can be revealed as meaningful in the context of relationships with ‘communication partners’ who know them well. Where some might describe a person’s behavior, through a psychological assessment, as ‘irrational’ or ‘meaningless,’ others, who have personal knowledge about the person, may be able to re-describe his or her actions as intentional or willful. That is, the behavior communicates a person’s will and/or intention to do or not to do something. In this account of will and/or intention, what is critical is that another person or group of people who know a person well can provide a description of his or her behavior that draws the connection between a person’s intention or will and their behaviour. In their description are made the links between a person’s intention or will, the actual things a person does, how they move, the sounds they make, the things they want to happen, and the interventions of others to assist a person in giving effect to those intentions; helping that person carry out, through consequential actions, the intentions they set. Through what Joel Feinberg calls the ‘accordion effect,’ the descriptions and re-descriptions of human action and their consequences can be told and written to reveal human agency, or to deny it.
For example, Audrey Cole, a parent of a man with a profound intellectual disability, and also a thinker, writer and activist on advancing alternatives to guardianship and a supported decision-making model reflects on the meaning of human will this way:
…human will – that instinctive and inherently human imperative, that sense of being, that thing that tells us we are here, that we can feel. I honestly don’t think it has anything to do with intellect. Ian [her son] has it! It is what makes him stop, suddenly, and listen to the sounds of the birds or of the wind blowing through the trees. I am sure it is what makes him so sensitive to music. It is also what makes him instinctively draw back or resist things he doesn’t understand (such as an unfamiliar medical procedure, for example). And it is certainly the thing that has prompted him on a couple of occasions when Fred [her husband] had been in intensive care to gently reach out and stroke Fred’s arm – an intimacy that is not typical of Ian who usually would have to be prompted to make such personal contact. I don’t know what it is but I do know we all have it! And if we take the trouble to get to know people who do not communicate in typical ways, we become very conscious of it.
The criterion of decision-making ability, that one is able to express their intention or will, and that it serves as a basis for agency through time, in at least some description by a community of knowing and valuing others, has strong foundations in philosophy. It is much more disability-neutral and inclusive than the criterion of demonstrating understanding of information and appreciating consequences of a range of choices available, to which people with intellectual, cognitive and/or psychosocial disabilities are so often subject.
B. Personal Identity: a ‘Narrative’ Approach to Human Agency
The expression of intent or will is philosophically sound as a basis for ascribing human agency. However, on its own, it may still not be enough for some parties to recognize the decision making ability of an individual with more significant disabilities. They may not be convinced that a person’s intention or will expressed and described in one situation or at one point in time, can be trusted enough over time to constitute their intention or will as the basis of legal relations like a contract. This is the criterion of ‘personal identity’ first formulated by the Enlightenment philosopher John Locke in the 17th century. His related theory of the ‘continuity of consciousness’ through time as the basis of self-consciousness influenced major political philosophers including Jean-Jacques Rousseau and Immanuel Kant, and their use of ‘reason’ and rationality as the tests of moral and legal personhood and capacity to act.
When the usual criterion of capacity states a person must understand information and appreciate the nature and ‘consequences’ of a range of choices and decide among them, the test is requiring a measurement of ‘personal identity.’ That is, the test is requiring that an individual have a capacity for memory so that the person who acts to enter a contract at one point in time can be trusted by the other party to understand its ‘consequences’ for their obligations into the future. Thus, testing for memory is often one of the main ingredients of capacity testing. It is why people with significant intellectual, cognitive or psychosocial disabilities – for whom remembering and generalizing learning from one situation to another may be difficult without supports; or who, like anyone else, may demonstrate different states of consciousness and memory on an episodic basis – are so often found legally incapable or in need of protection and thus substitute decision-making.
This idea of personal identity has been roundly critiqued in moral philosophy of personhood; and jurisprudence in some competency cases can be read similarly. Moral philosopher Paul Ricoeur, feminist philosopher Seyla Benhabib, Alisdair MacIntyre and a growing number of other philosophers present an alternative account of personal identity in the idea of the ‘narrative self.’ In Oneself as Another, Ricoeur challenges directly the philosophical and legal notion that we can only demonstrate that we are the same person through time by showing that we have the same mental state through time. Rather, he suggests, we all experience discontinuities in ourselves, we all become ‘other’ to ourselves through changes in character and mental state over time, conflicting desires and wishes, changes of mind. What ascribes personhood to us, as a person who is to be trusted through time, is that we can answer the question – ‘Who are you?’ ‘Who is she?’ – with a coherent narrative, a life story that makes sense of all the changes, and losses, and new directions and discontinuity, of illness and of healing, that make up any person’s life. We become a person to the extent that we can, or that others who have personal knowledge about us can, tell a coherent story about who we are. Our actions and intentions can be made sense of in the context of the narrative coherence. It is this narrative coherence of my particular and unique life that renders reasonable the decisions that give effect to my intentions, not some abstracted ‘reasonable person’ standard; even if I need substantial assistance from others to make and carry out the decisions, my intentions or will inspire and motivate in those who know me well.
C. A Minimum Threshold of Human Agency and ‘Decision-making Ability’
We can build a more robust and inclusive recognition of what it means to have decision-making ability on the basis of these criteria, as outlined above: 1) my capacity to express my will and/or intentions, at least to others who know me well, and who can then ‘confer’ or ascribe agency to my actions in their descriptions of me to others; and 2) being able to tell ‘who’ I am, my life story of values, aims, needs and challenges, or having my community of knowing and valuing others do that for me, and using that narrative coherence of my life to help direct the decisions that give effect to my intentions. In effect, these establish a minimum threshold for characterizing what it means to be a person with practical reason and thought, someone with human agency in the present, whose legal capacity is recognized and maximized. This minimum threshold of human agency we might characterize as: to act in a way that at least one other person who has personal knowledge of an individual can reasonably ascribe to one’s actions, personal will and/or intentions, memory, coherence through time, and communicative abilities to that effect. If to my actions can be ascribed intentions or my will which themselves can be woven into a coherent narrative, either by myself or others, even if the intentions or willful behavior represent some discontinuity with the past, then this should be sufficient ground for exercising my legal capacity. And, this ascription by others of my will and/or intentions should be the basis of my legal capacity, even if its exercise requires others to make transactions on my behalf.
But this is a dramatic departure from the usual standards of mental capacity on which the law of legal capacity has traditionally rested – the ability to understand information and appreciate the nature and consequences of a decision. The traditional criteria are based on individual skills and abilities of cognitive functioning, as though one had to demonstrate one could answer, in language others understood, certain skill-testing, ‘decision-making capacity-proving’ questions. This approach to defining criteria of capacity is rooted in an individualistic, bio-medical model of disability that the CRPD rejects. To make recognition of legal capacity dependent on a particular set of decision-making skills, as most current capacity assessment tools do, is to import ableist assumptions about what the demonstration of decision-making ability entails. This approach to definition reproduces disability ‘status’ as the basis for restricting legal capacity, a clear violation of the CRPD, and systematically discriminates against people with intellectual, cognitive, psychosocial and communication disabilities; people whose disabilities may entail challenges with managing decision making.
D. Shifting the Focus of Criteria for Legal Capacity from ‘Mental Capacity’ to ‘Decision-making Capability’
The CRPD breaks the link between mental capacity and legal capacity, by prohibiting discrimination on the basis of disability in the enjoyment and exercise of legal capacity. On their face, mental capacity statutory provisions which articulate cognitive tests for having one’s legal capacity recognized and protected appear to be in violation of the CRPD. While the CRPD establishes a definitive break between mental capacity and legal capacity, it provides only the most general of solutions – that is, that people are owed supports in order to exercise their legal capacity.
How do we actually go about attaching to the minimum threshold for what it means to have agency as a person, recognition of and respect for legal capacity? We need a concept that maintains the integrity of decision-making relationships and agreements for both parties, but one that recognizes the essentially social nature of human agency and individual decision making for all of us, and certainly when we are at the minimum threshold as characterized above. The concept must be able to encompass the supports and reasonable accommodations to which a person is due in the decision-making process.
We propose the concept of ‘decision-making capability’ as the conceptual foundation for putting into law, policy and practice the new paradigm of the right to legal capacity recognized by the CRPD. In making this proposal, we are informed by Amartya Sen’s ‘capabilities approach’, in which the notion of ‘functioning’ plays a central role, as a potentially productive way to move beyond the limitations of a ‘mental capacity’ test. It could also help build a more robust framework of the ‘functional’ test in a manner consistent with the promise of the CRPD and Article 12. Sen developed his ‘capabilities approach’ to grapple with the question of how development can expand “real freedom” which consists for him in individuals’ capability to achieve ‘functionings’ they value. Sen is interested in the actual social, economic and political, material requirements people have for fulfilling their rights, including a right like legal capacity we would argue. We do not exercise our rights outside of the social, economic and political contexts which afford us certain capabilities or deny them to us.
As such, Sen’s framework provides insight for rethinking the ableist assumptions of the usual criteria for decision-making ability. In his framework, Sen links “commodities” (or goods and services that one actually gains access to), to “capability to function,” (the ability to do something once one has the commodities/inputs) to actual “functionings” (like getting decisions made) which result in particular utilities (like ‘happiness,’ or in the case of the utility that Article 12 speaks to, ‘self-determination’). Sen distinguishes functions and capabilities as follows:
A functioning is an achievement, whereas a capability is the ability to achieve.
Functionings are, in a sense, more directly related to living conditions, since they are different aspects of living conditions. Capabilities, in contrast, are notions of freedom, in the positive sense: what real opportunities you have regarding the life you may lead.
Sen defines a “functioning” as “an achievement of a person: what she or he manages to do or be.” While a systematic application of the capabilities approach to the area of decision-making and legal capacity is beyond the scope of this paper, its core concepts provide a case for redefining the usual capacity tests in a manner that would be consistent with the principles and provisions of the CRPD – e.g. autonomy, freedom to make one’s own choices and recognition of the responsibility of States Parties to ensure reasonable accommodation and supports to exercise legal capacity.
Martha Nussbaum has adapted Sen’s capabilities approach and applied it to the case of significant intellectual disability. However, her application runs into the same difficulty that an individually-based functional testing approach to mental or decision-making capacity would encounter. She identifies the basic capabilities a person should be entitled to in order to live a life of dignity, and the kinds of social and economic conditions necessary to achieve these capabilities and pursue and live a good life of one’s choosing. She does this in order to consider questions of social justice – i.e. how to allocate resources in ways that maximize the capabilities of all, recognizing that some may require more supports than others to achieve an equality in capability.
However, when she tests her theory with the case of people with significant intellectual disabilities she maintains a highly individualistic notion of disability in her analysis rather than a social model approach. Her definition of ‘humanly central capabilities’ like ‘senses, imagination and thought’ and ‘practical reason’ display this analytic bent. She defines practical reason as “[b]eing able to form a conception of the good and to engage in critical reflection about the planning of one’s life.” ‘Senses, imagination and thought’ are defined as “[b]eing able to use the senses to imagine, think, and reason – and to do these things in a ‘truly human’ way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training.”
Not surprisingly Nussbaum arrives at a conclusion that since some individuals with more significant disabilities will never be able to achieve these capabilities, which she deems ‘central,’ other arrangements are needed. In reference to a woman she knows of with significant intellectual disabilities she writes,
So what we clearly ought to say, it seems to me, is that some of the capabilities on the list will not be attainable for her, but that this is extremely unfortunate, not a sign that she is flourishing in a different form of life [Nussbaum is looking to advance a more inclusive definition of human flourishing to challenge systematic segregation based on disability]. Society should strive to give her as many of the capabilities as possible directly; and where direct empowerment is not possible, society ought to give her the capabilities through a suitable arrangement of guardianship. But guardianship, however well designed… is not as good for Sesha [the woman she is writing about] as it would be to have the capabilities on her own… if we could cure her condition and bring her up to the capabilities threshold, that is what we would do, because it is good, indeed important, for a human being to function in these ways.
Nussbaum challenges the enlightenment notion of personhood as articulated by Kant – who establishes powers of reason and rationality as the defining features of personhood and of individuals deserving of equal moral worth. These features of moral personhood are imported, she suggests, into Rawls’ account of persons and the primary goods deemed essential for an individual to pursue and realize their life plan. Her list of ‘capabilities’ includes measures that would address the need for care that persons with intellectual disabilities have, and that we all have in moments of dependency that come with illness and decline through aging. But ‘care’ is not a solution to the right to legal capacity. Even in Nussbaum’s account, informed by a feminist reading and critique of the Kantian and enlightenment ideal of the sovereign self, freely choosing one’s destiny by the powers of one’s reason, care for the disabled seems to trump equal rights to legal capacity and recognition. It’s as though the standards of personhood that are set up for critique, return by the back door. Nussbaum, and others, have created room in theories of justice for selves that come with needs and interdependencies, but if the solution is care managed via guardianship, we are still lacking a moral argument for equal personhood consistent with the aspirations of the Convention, and certainly the equal right to recognition of legal capacity recognized in Article 12.
A closer application of Sen’s capabilities approach that remains consistent with a social model approach to disability might go something like the following: people with disabilities have a right to enjoy legal capacity on an equal basis with others in all aspects of life. Like anyone else, legal capacity can only be restricted where a person is lacking the requisite decision-making capability to make a particular decision. Decision-making capability cannot be based on disability status. And, legal responsibility can only be diminished where a person lacked the requisite decision-making capability when carrying out actions which are now the focus of civil or criminal proceedings. Decision-making capability would then have three main components: a) decision-making abilities that meet the minimum threshold as defined above; b) needed decision-making supports (described in more detail below); and c) reasonable accommodation on the part of others in the decision-making process (i.e. the goods and services). This notion of decision-making capability combines an individual’s particular decision-making abilities with the supports and accommodations needed to exercise legal capacity in relation to others including entering agreements and making contracts.
The broader account of ‘legally capable’ human agency and decision-making capability described in this section accords with the paradigm shift in human rights protections reflected in the CRPD. It establishes a philosophical foundation on which to ground the positive duty of the state to maximize autonomy for people with significant intellectual, cognitive and psychosocial disabilities that is beginning to be articulated in Canadian jurisprudence. It does so by challenging the idea that the only way to exercise legal capacity is through what could be termed a ‘legally independent’ status; the idea that one enters a contract, gives informed consent, and manages property transactions independently. This decision-making status has come to be equated with the right itself. If one cannot manage decision making independently, it is assumed that one does not have legal capacity. It is on this basis that many people with disabilities have the right to legal capacity restricted or denied altogether.
A broader account of human agency and personhood, or of persons who exercise legal capacity, and of the ways in which they exercise it, expands our understanding of how the right to legal capacity can be exercised. The notion of ‘decision-making capability’ – as a combination of unique decision-making abilities combined with supports and accommodations – provides a key conceptual tool with which to fashion a legal paradigm for recognizing the right to legal capacity that is consistent with the provisions of the CRPD and its social model approach to disability.
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