'It gives me my freedom': Technology and responding to bodily limitations in motor neuron disease

Amanda Pavey, Narelle Louise Warren, Jacquelyn Allen-Collinson

Research output: Contribution to journalArticleResearchpeer-review

14 Citations (Scopus)

Abstract

People living with motor neuron disease (MND) experience profound and rapidly progressing impairment. In order to maintain their physical and social functioning, people so affected employ a range of technologies and technological aids (body auxiliaries) to enhance their life and maintain well-being. Using a phenomenological study design, we explored the experiences of 42 men and women who had been diagnosed with MND. Although many participants initially resisted the adoption of aids (often-electronic devices that enabled continued participation in daily life) or tools (the instruments that allowed achievement of specific tasks), such technologies offered a way for people with MND to overcome, to some extent, the limitations posed by their physical degeneration. Through generating a sense of normality , these kinds of enabling technologies promoted social engagement and the maintenance of valued relationships or activities. Technologies can provide people with MND with some positive experiences within a way of being-in-the-world that has become so difficult and challenging. Copyright (c) 2015 Taylor Francis Group, LLC.
Original languageEnglish
Pages (from-to)442-455
Number of pages14
JournalMedical Anthropology
Volume34
Issue number5
DOIs
Publication statusPublished - 2015

Keywords

  • body auxiliaries
  • enabling technologies
  • motor neuron disease
  • phenomenology
  • Well-being

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