Next week, I will be co-running — with Jillian Craigie and Oliver Lewis — the first of two workshops that comprise a collaboration between the Centre for Medical Humanities at Durham University with the Centre for Philosophy, Justice and Health (UCL) and the international human rights NGO The Mental Disability Advocacy Center (MDAC). The closed workshops bring the medical humanities into interaction with other arenas of expertise and practice on questions relating to disability, mental capacity, human rights, and personhood. The intent is not merely to discourse upon a series of very thorny questions that currently characterize these domains, but to figure out how *practice* (within the realms of the law, policy, medicine and advocacy) might be transformed. We have gathered leading thinkers, writers, analysts, practitioners and activists to address the following objectives:
- For medical humanities scholars, philosophers, social scientists, policy analysts, psychiatrists and other mental health professionals, service users, people with disabilities, and other stakeholders involved in the fields of mental health and disability to engage in a critical dialogue with human rights activists to address some conceptual and policy challenges in implementing the UN Convention on the Rights of Persons with Disabilities (CRPD).
- To assist with formulating advocacy stances on the right to legal capacity, and on involuntary psychiatric detainment and treatment.
- To identify questions for future collaborative research and practice to assist in advancing implementation of the CRPD.
- To build critical mass in relation to conceptual and practical issues relating to the implementation of the CRPD – in particular by strengthening connections across different domains of expertise.
Our first seminar (on “Support versus substitution”) contains five substantive sessions (as well as one session specifically focusing on practice and advocacy), which will be addressing the following overarching questions:
Is there a necessary relationship between cognitive ability and personhood? How can we think about the nature of cognitive ability in an intersubjective sense in order to open up the possibility of others supporting and enhancing a person’s cognitive ability? To what extent does the construct “cognitive ability” overlap with that of “mental capacity”?
How can personhood or personal identity through time be coherently recognised given the discontinuous nature of states of mind in any particular self? In particular, how do we configure the place of particular ‘mental states’ (gathered under such medical terms as psychosis, mood disorder, dementia, personality disorder, delirium, etc.) in decision-making related to informed consent, contracting and other legal relationships? Is recognition of legal personhood to be suspended when a person is in such states? And who decides when such a state commences and ends?
Article 12(4) of the CRPD establishes that any measures that relate to the exercise of legal capacity must respect a person’s “will and preferences”. Are the concepts of “will and preferences” robust enough to ground the exercise of legal capacity? Are they adequately specified and, moreover, do they adequately encompass what ought to be respected in the exercise of legal capacity? In the context of discontinuities and conflicts within the self (e.g. transient mental states, multiple and conflicting desires and preferences) what is an adequate conceptual foundation for understanding the self that takes into account this discontinuity and the full range and diversity of intellectual and psychosocial disability?
There are many people with profound intellectual disability who can express a general will and some preferences that may only be able to be understood and interpreted by a few people who have personal knowledge of the individual. To what extent can philosophy (and the law) recognise the individual in such a situation as the agent of his or her legal acts to whom rights and responsibilities thus apply, when this requires support persons (who know and can interpret the individual’s will and preferences) to carry out the reasoning necessary for interpreting and giving effect to an individual’s will? Is there a threshold above which the level of involvement by another person in a supporting role means that it no longer makes sense to talk of the resulting decisions or actions as belonging to the disabled person in the legally relevant sense?
Is it possible to shine a bright light between, on the one hand, supporting a person to exercise his or her legal capacity, when that may include interpreting a person’s general will and preferences and executing that through acts/decisions; and, on the other, substituted decision making? What should happen when someone refuses to be supported in their decision-making? Is pressure to engage with support ever justified? If so, at what point does this pressure become unduly coercive?
We gratefully acknowledge financial support from the Centre for Medical Humanities, Durham University (through our Wellcome Trust Strategic Grant for Medical Humanities); and from a Wellcome Trust Fellowship in Biomedical Ethics .
We hope there will be live tweeting from the workshop, using the hashtag #CapSS. We have also invited some entries for the blog that will reflect on the workshop.