A point made repeatedly over the last few years is that the Locked-in Syndrome offers unique real-life material for revisiting and challenging certain ingrained philosophical assumptions about the nature of personhood and personal identity. Indeed, the claim has been made that a closer study of LIS will call into question some of the traditional conceptions of personhood that primarily highlight the significance of consciousness, self-consciousness and autonomy and suggest the need for a more interpersonal account of the person. I am (...) skeptical about these claims and will in the following argue that the theoretical relevance of LIS for an understanding of selfhood and personhood has been exaggerated. (shrink)

There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

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. (shrink)