At a recent conference on legal capacity, I was struck by the failure of another invited expert to adhere to the paradigm of supported decision-making as articulated by the CRPD Committee in General Comment No. 1. We still need to work to ensure that this paradigm is well understood and appreciated, despite the progress made in national reforms (see evaluation of Peruvian Legal Capacity Reform), the policy shift at WHO to promote the elimination of coercion in mental health settings, and the phenomenal mobilization of opposition to the draft Oviedo Protocol to the Council of Europe Convention on Bioethics, including a resolution by the European Parliamentary Assembly calling for the development of non-coercive mental health practices and eventual abolition of coercion.
I would like to focus on the principle of equality and non-discrimination as the overarching theme of CRPD Article 12,1 and what this means for our understanding of ‘supported decision-making’.
Supported decision-making is distinguished from substituted decision-making in that support respects the autonomy, will and preferences of the person concerned.2 Supported decision-making refers both to particular arrangements for support in the exercise of legal capacity, which anyone may enter into, and to the legal and programmatic regime that recognizes the legal capacity of persons with disabilities on an equal basis with others and sets out a framework for support arrangements and safeguards based on respect for the person’s will and preferences.3
Some lawyers and advocates still promote a view of supported decision-making as a decision-making status. This view is paired with a theory of legal capacity that treats the existence of support as part of the equation together with the person’s individual decision-making skills in order for someone to determine whether they ‘have’ the legal capacity to perform a particular act (such as giving/refusing informed consent, or signing a contract).
This is plainly contrary to the CRPD, which views legal capacity, including both standing (the capacity to hold rights and duties) and agency (the capacity to exercise rights and duties) as a universal right of adults, irrespective of their disability or their actual or perceived decision-making skills. Support is a positive measure that is designed to make the exercise of legal capacity more satisfying to the person concerned; it cannot be required as a condition precedent for the recognition of any adult’s legal capacity to make decisions for themselves. Separate statuses create a hierarchy of decision-makers — not only between those deemed ‘independent’ and those deemed to require more or less support, but implicitly between all adults and those who are mandated to make the meta-decisions about their own and others’ status as decision-makers! It is this meta-level of decision-making that is both taken for granted and obfuscated in pre-CRPD approaches to legal capacity that conflated legal capacity with so-called ‘mental capacity’ or (actual or perceived) decision-making skills.
‘Supported decision-making’, as a phrase used to characterize the CRPD-compliant regime that recognizes the legal capacity of all adults and offers support that respects the person’s will and preferences, is convenient to distinguish it from substitute decision-making regimes, which remove legal capacity from an individual whether for all decisions or for even one decision.4 Yet it can be misleading to emphasize support as a feature of CRPD-compliant regimes, since the right to legal capacity is recognized as a first premise, prior to the question of whether or not an individual seeks out or accepts an offer of support. While some activists in the movements of people with psychosocial disabilities view support as essential — whether from peers or as therapy/counseling — others rely on self-support or view support as being essentially subsidiary to their own process and of unpredictable value (sometimes valuable, at other times not, therefore not central in their lives).5
It is equal legal capacity, and not support per se, that grounds the CRPD paradigm of legal capacity. The distinction between support and substitute decision-making emerges from the equality paradigm, not vice versa. It is because we are equals before the law, as human beings each with our own subjectivity, that we deny the moral and legal authority of another person to second-guess our personal decisions or our right to make them, while accepting on an egalitarian basis, from one fallible human being to another, the possibility of support that respects our own will and preferences.
Centralizing support while de-emphasizing equality and non-discrimination in the right to legal capacity (which is fundamentally about the equality of people with psychosocial, cognitive or intellectual disabilities and other people in law and in society) results in an approach I call ‘legal capacity lite’ — while claiming to uphold Article 12, it undermines the right to legal capacity on an equal basis with others in two ways.
1. Standpoint as an aspect of equality imperative
First, the ‘lite’ approach views legal capacity from an external rather than internal standpoint — from a perspective of legal and social actors administering a regime, rather than that of people with disabilities whose legal capacity has been put into question. This may seem like a subtle point, but it underscores the fact that most lawyers and researchers participating in this discourse are not persons with psychosocial disabilities (or people with intellectual or cognitive disabilities) themselves. Pointing this out is not impolite: disability rights law, as much as feminist jurisprudence, critical race theory and Third World approaches to international law, should take as an uncontroversial maxim that standpoint matters and that neutrality is not possible. In other fields, it is predominantly scholars who have lived the standpoint in question that set the tone and agenda; however in theory pertaining to legal capacity the reverse is true. In asking why, we encounter the discriminatory denial of subjectivity and authorship that underlies both the denial of legal capacity to these constituencies and their relative absence from both theoretical and political leadership positions of any kind — even on issues pertaining to themselves.
We badly need to develop a cohort of legal and political theorists who develop critical positions towards the systems that oppress us and towards the society as a whole, from an outsider standpoint as people with psychosocial disabilities. (For example, I’d like to see the vision of Mad Pride articulated by Rodrigo Fredes and Ilse Rodriguez brought into the realm of law and policy — a tall order, which I’m not sure those individuals would even agree with.) There are a few of us, but we are dispersed and overworked. Scholars who are not themselves people with psychosocial disabilities need to first de-emphasize themselves as authors or authorities, and second, question your approach to theory, law and politics as to whether it is standing alongside people with disabilities, looking outward in the same direction they are facing, or looking ‘at’ them from the standpoint of states, mental health system operators, legal system operators, family members, members of the public — who all bring histories and practices of objectification.
Standpoint — shifting the ground of subjectivity and authorship — is an aspect of equality and non-discrimination in its collective dimension. When law and policy are made by others ‘about us, without us’, there is a democratic deficit that results in biased law and policy, which may then become taken for granted even by the oppressed group itself. In contrast, when an oppressed group breaks out of this cage, as happened during the CPRD drafting and negotiations process, there is a need to incorporate the many layers and dimensions of the resulting shift in paradigm. We need both everyone’s independent explorations of the richness of the CRPD and some way to put these visions in dialogue with each other constructively, that centers the diverse visions of mad people/people with psychosocial disabilities.
2. Erasure of the protagonism of people with psychosocial disabilities, and re-introduction of coercive-paternalistic model
The second way that ‘legal capacity lite’ undermines CRPD equality jurisprudence is through the simultaneous erasure of people with psychosocial disabilities as a distinct constituency that has articulated theory influentially within the process of international lawmaking (erasing the actuality of our authorship in the discourse that resulted in the CRPD standard of universal legal capacity), alongside the promotion of limitations on legal capacity that, coincidentally or not, impact most directly on people with psychosocial disabilities.
One aspect of this is most likely inadvertent — a conflation of people with psychosocial disabilities and people with intellectual disabilities, while people with cognitive disabilities (dementia and autism) are often not addressed at all. The most common understanding of supported decision-making as an alternative to guardianship is based in practice developed by family members of people with intellectual disabilities together with people with intellectual disabilities themselves. Family members who are supportive understand that people with disabilities are more capable than they are generally believed to be, and are entitled to take risks and move about in the world, supposing that the person has enough support and/or has had enough attention to building their decision-making abilities in the developmental process from childhood to adulthood. This view is centralized at the point in time of transition from childhood to adulthood, when under current guardianship laws in many countries, parents routinely obtain guardianship so that their adult children never have the ordinary status of adults with respect to their legal capacity.
People with intellectual disabilities as well as many autistic people have been viewed incorrectly as lifelong children; the CRPD rejected that approach.6 Yet the transition from childhood to adulthood itself, though formally based on the objective criterion of age, also often entails a struggle between the emergent adult and the parents who maintain an attitude of vigilance or concern. This transition point can be critical for people with psychosocial disabilities as well, since teenage years and young adulthood are a common stage of life for people to first experience crisis and enter the mental health system. How societies address this transition, and its relationship to dominance relations under patriarchy, class society, and states, and to the regime of legal capacity as a means by which states have distinguished between ‘equals’ and ‘non-equals’ before the law, needs to be explored at a later time. For now, I want to point out that the role played by this transition point in advocacy for the legal capacity of people with intellectual disabilities may contribute to paternalism.
The articulated perspectives, theory, and practice of people with psychosocial disabilities as protagonists (hard to find in academia, rarely funded in projects for legal capacity reform, and found primarily outside disability rights discourse in ‘mental health alternatives’ or ‘mad studies’ —valuable in themselves but disconnected from the CRPD normative paradigm) are erased when the model developed by families and self-advocates with intellectual disabilities is taken as universal and applied to all people with disabilities as the ‘CRPD approach’ to legal capacity as supported decision-making.7 This conflation leads to assumptions about the role of support in the right to legal capacity (see above), and about the character of support needs (assessed by an expert, or understood through a conversation with the person to explore their subjective support needs and aim to meet them). It also centers the kind of support that entails either summarizing information to make it easier to understand or interpreting the person’s will based on idiosyncratic non-verbal communication, and de-centers support that relates to the interplay between reason and emotion, distinguishing between possibility and impossibility (an act of discernment, not an objective fact to be discerned). (In a short paper I explore Discernment as Process, but ‘act’ is preferable to ‘process’ as it underscores the subjective character of discernment as an action by an individual relating to oneself, or that of a group relating to itself, impenetrable to external observers).
The assumed universal nature of types of support that are not central to people with psychosocial disabilities leads to the second problematic result of emphasizing ‘supported decision-making’ rather than equality as the fulcrum of the legal capacity paradigm shift. Without a coherent understanding of how the full CRPD model — equality plus support based on individual will and preferences — applies to people with psychosocial disabilities, some scholars and advocates seek to reincorporate aspects of our legal capacity within the rejected model of coercive paternalism implicated in both guardianship and forced psychiatric interventions. With an external perspective rather than one aligned with people with psychosocial disabilities as persons equal to others before the law, and with a model that has not yet fully incorporated at theoretical and conceptual levels the lived experiences of people with psychosocial disabilities, they reach for solutions that appear readily available. The least problematic of these is an undue reliance on advance directives to do the work of supported decision-making in crisis situations, in particular on ‘Ulysses’-type advance directives that bind one’s own future will.
Advance directives that allow the person to change their mind at any time including during the crisis situation itself are one form of support but insufficient as primary policy because they cannot address emergent needs — crisis is by definition unexpected, and not everything can be anticipated; furthermore, not everyone will choose to make advance plans. Those that bind the person’s future will pose legal and moral problems that call into question the right to exercise legal capacity ‘at all times including in crisis situations.’ This type of advance directive seeks to avoid the problem through a managerial solution — just do what the directive says — when we need instead to explore how to interact with people with crisis situations in ways that respect their legal capacity, seek to explore with them their will and preferences, and provide desired and acceptable kinds of support.
Advance planning documents can be used as a starting point for discussion when a crisis or other emergent situation presents itself, and as a default approximation when the ‘best interpretation of will and preferences’ is required (when, after significant efforts, it has proven to be unfeasible to determine the person’s will, the standard articulated in General Comment No. 1 para 21; ‘best interpretation’ is not substitute decision-making; if the person starts objecting, correct your interpretation). However, we need to address squarely the particularities of psychosocial crisis situations as interpersonal phenomena that require creativity and not management.
Key elements for support in crisis situations
In a series of brief schematic writings, I propose that the key elements are 1) supported decision-making practices specifically for crisis situations, encompassing potentially natural supports, formally designated supports, and transactional/skilled supports, all based on respect for the person’s autonomy, will and preferences; 2) non-discriminatory and non-violent conflict resolution to deal with the interpersonal conflict that has been discriminatorily characterized as the person being ‘dangerous to others’; 3) practical supports including advocacy and defense to create safer space for the person to navigate crisis well and reduce potential harms — also based on respect for the person’s autonomy, will and preferences in contrast to the discriminatory characterization of being ‘dangerous to oneself’ or ‘at imminent risk of harm’. (See the set of notes titled ‘Towards Positive Policy,‘ the brief paper ‘Positive policy to replace forced psychiatry,’ and my intervention from the floor at the 2019 CRPD Conference of States Parties. I expect to continue developing this framework.)
While advance directives represent a credible though flawed attempt to address psychosocial crisis within the CRPD framework and from the standpoint of people with psychosocial disabilities, some scholars have turned a managerial gaze on people with disabilities and invoke a proportionality argument to justify forced interventions against individuals deemed to be ‘dangerous to self or others.’8 This is simply an outcome-based deprivation of legal capacity (restriction of decision-making based on a predicted outcome judged as undesirable by an observer), that will either amount to a paternalistic and arbitrarily restrictive measure against the population as a whole, setting up some elite meta-decision-makers to judge everyone, or it will be applied discriminatorily to people with disabilities and others who may be viewed as causing social disorder through their unmet needs or divergent or oppositional behavior. It would inevitably be used similarly to that standard in existing mental health laws, to restrict the freedom of people in crisis situations, as is the undoubted purpose underlying such proposals even when they attempt ‘disability-neutral’ terminology.9
Just as the CRPD Committee came to reject deprivation of legal capacity based on a ‘functional assessment’ of decision-making skill — which had earlier been claimed as a ‘disability-neutral’ approach to the restriction of legal capacity — as a discriminatory violation of the right to equal recognition before the law, we need to recognize as discriminatory any attempts to justify the reintroduction of arbitrary detention and substitute decision-making regimes against people with psychosocial disabilities, including those that address crisis situations. My proposed framework aims to meet the needs that society has wrongly placed in the hands of medical-legal institutions of both coercive paternalism and outright social control with a paternalistic cover story, to parse out the needs which should be met, from the substantive and formal discrimination that has to be rejected. We have overcome discrimination time and time again in creating the evolving norm of legal capacity in the CRPD, and we must continue to do so.
Lastly, it has been problematic that much of the theory and practice regarding legal capacity reform has been based on a de-linking of Article 12 (equal recognition before the law; legal capacity) from Article 14 (liberty; prohibition of disability-based detention including involuntary mental health admissions). At an early stage, a number of influential actors deliberately set aside the abolition of forced psychiatric interventions as part of legal capacity reform (despite its being naturally encompassed under the guarantee of legal capacity ‘in all aspects of life’ in Article 12 paragraph 2).10 While the CRPD Committee’s General Comment No. 1 recognized that forced psychiatric interventions violate legal capacity, including in emergency situations (GC1 para 42), and their Guidelines on Article 14 and subsequent General Comments continued to develop the absolute prohibition of forced psychiatric interventions, the deliberate marginalization of this issue, combined with the unequal access by people with psychosocial disabilities to funding and institutional power, set the stage for our current work and explains in part why we are lagging behind.
We should remind ourselves of the origins of the CRPD as a constitutional moment that allowed people with disabilities, and people with psychosocial disabilities in particular, to emerge as protagonists in international law. This emergence rectifies long-standing discrimination that treated us in effect as objects of the law, absent from its discourses, while enshrining norms about legal capacity that cemented our exclusion. For related to power inequalities, including some that are persistent and structural and others that are circumstantial, we have been marginalized even in post-CRPD legal capacity discourse. (On the positive side, our own movement has used the time to flesh out still-under-appreciated diverse theory and practice using the CRPD.) This has led to an incomplete and flawed theory and practice of legal capacity and supported decision-making by scholars and advocates, to an erasure of the specific barriers facing people with psychosocial disabilities from disability rights discourse and their transfer to the ‘human rights in mental health’ context (which re-objectifies us as objects of the legal-medical/clinical gaze), to an inability of reform initiatives to address psychosocial crisis situations as an occasion of legal capacity deprivation, and to outright attempts, even by scholars claiming to work within the CRPD paradigm, to subvert the CRPD’s prohibition of substitute decision-making.
The relegation of our most significant barriers of law and policy to ‘human rights and mental health’ (which is also related to the de-linking of Articles 12 and 14) has had serious consequences for our struggle to abolish forced psychiatric interventions. Most damagingly, it marginalizes us within the collective grouping of people with disabilities — a marginalization that we specifically fought against in our strategy for the CRPD drafting and negotiations. Our exclusion can be rectified by fully exploring psychosocial crisis situations — the occasions that society seeks to justify as a predicate for forced psychiatric intervention, based on ‘risk to self or others’ — in the same way that we parsed legal capacity generally, by separating solidarity-based concerns (offering support and accompaniment) from discrimination, developing human rights norms from the standpoint of people with psychosocial disabilities.
We need to face squarely the nature of psychosocial crisis situations and the challenges involved, and to meet them within the parameters of the CRPD paradigm of equality and non-discrimination in the exercise of legal capacity and the right to live in the community, including appropriate supports subject to the person’s will and preferences, and equality and non-discrimination in liberty and security of the person, including non-discriminatory police and justice systems and the availability of conflict resolution subject to the will and preferences of all parties concerned. My writings on positive policy linked above articulate conceptually where psychosocial crisis situations fit in the legal capacity universe and how we can counter the discriminatory tropes including medicalization, legal capacity deprivation (‘incompetence’), alleged danger to self, and alleged danger to others, with positive policy while rejecting all such discrimination.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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