Contemporary bioethics has been somewhat skewed by its focus on high-tech medicine and the resulting development of ethical frameworks based on an acute-care model of healthcare. Research and scholarship in bioethics have payed only cursory attention to ethical issues related to disability. I argue that bioethics should concern itself with the full range of theoretical and practical issues related to disability. This encounter with the disability community will enrich bioethics and, potentially, society as well. I suggest a number of items (...) that the bioethics agenda should include, such as the development of a casuistry of the right to healthcare and to community integration and an advocacy role in fostering an understanding among the public and policy makers of the need to reform research and treatment related to disability. (shrink)

Face-to-face interaction is a primordial site for human activity and intersubjectivity. Empirical studies have shown how people reflexively exhibit a face orientation and work to establish a formation in which everyone is facing each other in local participation frameworks. The Face has also been described by, e.g., Levinas as the basis for a first ethical philosophy. Humans have established these Face-formations when interacting since time immemorial, but what happens when one of the participants is present through a telepresence robot? Based (...) on ethnomethodology, Peircean/goodwinian semiotics, multimodal conversation analysis and video data from a Danish residential rehabilitation center, the article shows the ways in which participants manage to interactively, cooperatively, and moment by moment achieve an F-formation in situ. The article contributes a detailed analysis and discussion of the kind of participant a telepresence robot is, in and through situated interactions: I propose that we term this participant the RoboDoc, given that it is an assemblage of a doctor who controls a robot. By focusing on the affordances of mobility, the article contributes to a renewed understanding of the importance and relevance of establishing Face-orientations in an increasingly technofied telepresence world. (shrink)

_Phenomenological insights into health issues relating to bodily self-experience, normality and deviance, self-alienation, and objectification._.

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 is concerned with the everyday practice of authority and knowledge in a group home for adults with intellectual disability. Based on fieldwork, the group home is understood as a workplace, which provides a model of organizational participation as a dilemma of freedom rather than a problem of power. Three kinds of work are observed in the everyday know-how of counselors and residents. First, Michael Lipskys concept of street-level bureaucracy is used to understand the inherently indeterminate and conflictual nature (...) of counselor work. Second, the competent participation of residents is also organized as work, often explicitly, as the work they must do to become more independent. The group home is therefore understood as a setting of governmentality because it reflects the indirect practice of authority characteristic of contemporary liberal societies. Finally, the ethnomethodological insight about the accomplished character of local order is the basis for the observation of everyday life itself as a third kind of work. (shrink)

The existential situation of persons who suffer from the locked-in syndrome raises manifold issues significant to medical anthropology, phenomenology, biomedical ethics, and neuroethics that have not yet been systematically explored. The present special issue of Neuroethics illustrates the joint effort of a consolidating network of scholars from various disciplines in Europe, North America and Japan to go in that direction, and to explore LIS beyond clinical studies and quality of life assessments.

Using multi-modal Conversation Analysis, this article demonstrates how teenage boys end assessments of social experiences with insults. When they participate in social activities, teenagers — as everybody else — routinely make assessments through which they produce social organization and create alignments. This article, however, analyzes structures of assessments that are contested in a counter-positional action. It will be demonstrated how the teenage boys end these challenged-assessment sequences through ‘insults’. A feature of these insults is that the conversationalists ‘go mental’, that (...) is, they question the ‘mental’ abilities and competences of their co-participant and thereby exclude him from the status of being a competent member of the group. In and through such conduct, the participants make the social function as well as the risks of assessing explicit: as competent members of a social group they are being held accountable for having claimed knowledge of the assessed target and may on these grounds be excommunicated as someone who does not understand social life. (shrink)