Facilitated Personhood

Australian Journal of Human Rights 19 (1), 2013

In this article, I argue that rights-based claims deriving from the experience of disability have to be understood from the perspective of relational forms of personhood grounded in the developmental and embodied specificities of impairment. I draw on an anthropological tradition of the critique of individualism and development of models of relational personhood grounded in the analysis of kinship-based social systems, with a particular focus on the work of Marilyn Strathern. I focus on the substantive contexts of care, therapy and cure as sites of contestation between activists and parents, which expose a dialectical relationship between rights and personhood with implications for an understanding of agency. I also consider these as moments in the unfolding lives of those diagnosed with a disability.

Disability & Society

The authors take up the challenge of Goodley and Runswick-Cole's call to dismantle the ability/disability binary such that those now called 'disabled' can unproblematically join the ranks of those who will be counted as human. Using the methodology of collective biography, the six authors explore their own memories of becoming abled, and find in those memories a similar pattern of desire for, and critique of, humanness that Goodley and Runswick-Cole found in the participants in their own study, participants who were categorised as intellectually disabled. We turn to post philosophies to further develop the vocabularies through which the meaning of human can be expanded to include those who are currently viewed as less-than-human or other-to-human in their difference from the norm.

The neurodiversity movement claims that there are neurological differences in the human population, and that autism is a natural variation among humans – not a disease or a disorder, just ‘a difference’. A ‘politics of neurodiversity’ is based on the claim that the ‘neurodiverse’ population constitutes a political grouping comparable with those of class, gender, sexuality or race. This paper considers the limits and possibilities of neurodiverse political activism, and concludes by calling for a politics of identity that does not depend on a politics of ‘us’ and ‘them’.

Neuropsychological rehabilitation, 2018

This article identifies the dilemma faced by clinical staff when asked to support the withdrawal of clinically assisted nutrition and hydration in a patient in a vegetative state. On the one hand, they are expected to treat the patient as a person in their daily interactions; on the other, they are asked to withdraw treatment on the grounds that it is futile, which may seem to run counter to treating people as persons. The article highlights that similar debates exist within the philosophical community about the nature of personhood and describes two philosophical accounts of personhood. The aim is to help clinicians articulate the reasons for their intuitions more clearly, and thus justify their beliefs.

2019

This paper looks to phenomenology and enactive cognition in order to shed light on the self and sense of self of patients with locked-in syndrome. It critically discusses the concept of the minimal self, both in its phenomenological and ontological dimension. Ontologically speaking, the self is considered to be equal to a person's sensorimotor embodiment. This bodily self also grounds the minimal sense of self as being a distinct experiential subject. The view from the minimal bodily self presupposes that sociality comes after the self, or that in other words, the essence of self remains independent of our social interactions and relations. In this paper, I rely on the idea of enactive autonomy and Heidegger's and Merleau-Ponty's views of human existence as primordially social, to argue for the contrary. The self is fundamentally relational and this is also reflected at the level of the subjective experience of being a self. I indicate how a strong relational view of selfhood can serve as a preliminary heuristic to make sense of the situation of the patient with LIS and conclude with some practical implications concerning patient autonomy, our ethical responsibility toward the patient, and the possibilities for improving the life of patients with LIS.

The Springer Handbook of Phenomenology and Personalization in Mental Health Care, 2025

Drawing on the methods of phenomenology, this chapter examines first-person accounts of ‘functional neurological disorder’ (FND), formerly known as ‘hysteria’ and later ‘conversion disorder.’ The aim is to try to make sense of experiences of bodily alienation, anxiety, and stigma and explore problems the disorder poses to phenomenology’s conception of narrative self-constitution, As a so-called ‘medically unexplained syndrome,’ the inability to understand and give meaning to one’s condition is a common feature of the FND experience, often resulting in a disjointed and incoherent life-story, a ‘chaos narrative’ grounded in feelings of confusion and uncertainty. I conclude by pointing to a person-centered approach to caring for those with FND, where the focus is not on ‘curing’ the disease but on ‘healing’ the person. Here, the health-care professional suspends the attitude of scientific detachment to adopt a position of empathy and compassion, imaging what it would mean and feel like to live with this disorder. Feeling with and for the person in this way creates a therapeutic space for healing, where healing is understood not in medical terms of a return to normal biological functioning, but in terms of, what Heidegger calls, ‘possibilizing,’ of creatively adapting and remaking oneself with narrative meanings and values that were previously concealed. As a form of healing, possibilizing helps the sufferer to be open and flexible, to adjust their lives and refashion an identity while continuing to live with a condition that remains mysterious, disabling, and often untreatable.

Current Anthropology, 2020

Social Inclusion, 2016

This editorial presents the theme and approach of the themed issue “Humanity as a Contested Concept: Relations between Disability and ‘Being Human’”. The way in which the concept of humanity is or must be related to disability is critically investigated from different disciplinary perspectives in the themed issue, which is, moreover, situated in the field of disability studies and related to discussions about posthumanism. The argument is made that humanity is a concept that needs to be constantly reflected upon from a disability studies perspective. Finally, the contributions of the themed issue are briefly outlined.

Societies, 2012

In this paper, we query the legitimacy of the atypical body for membership, quasi-membership, or exclusion from the category of human. Geneticized, branded, and designed as not normal, undesirable, and in need of change, embodied disablement can provide an important but circumvented analysis of the explicit and implicit nature of the legitimate human body, its symbolism, and responses that such bodies elicit from diverse local through global social and cultural entities. Building on and synthesizing historical and current work in the sociology of the body, in disability studies, in cyborg and post-human studies, this paper begins to ask questions about the criteria for human embodiment that are violated by interpretations of disability and then met with a range of responses from body revision to denial of the viability of life. Given the nascent emergence of this important topic, this paper chronicles the theory, questions and experiences that have provoked questions and posited the need for more substantive theory development and verification.

Workshop to take place in Barcelona, 17-18 November 2016: The locked-in syndrome (LIS), in which persons are conscious but almost entirely paralyzed and voiceless, is one of the most dramatic states a human being can find himself or herself in. This interdisciplinary international workshop will bring together cognitive neuroscientists, care and neuro-rehabilitation professionals, brain-computer interface experts, individuals involved in LIS patients associations, philosophers, bioethicists, medical anthropologists and sociologists, and historians of the brain/mind sciences to discuss the impact this unique condition has on ways of understanding personhood at the theoretical and practical levels. While the philosophy of personhood in the Western tradition since the late 17th century has emphasized cognitive capacities and self-consciousness, the experience of LIS contributes to open new ground for understanding how relationality, emotion, communication and phenomenal consciousness (the feeling of what it is like to be in a certain state) are constitutive of personal identity and the sense of self.