title: "It Gives Me My Freedom": Technology and Responding to Bodily Limitations in Motor Neuron Disease.
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.
authors.affiliation: a Motor Neurone Disease Association of Queensland , Australia.
authors.forename: Amanda
authors.initials: A
authors.lastname: Pavey
authors.forename: Narelle
authors.initials: N
authors.lastname: Warren
authors.forename: Jacquelyn
authors.initials: J
authors.lastname: Allen-Collinson
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D005610:Freedom; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000534:rehabilitation*; D012656:Self-Help Devices / Q000523:psychology*
keywords: body auxiliaries; enabling technologies; motor neuron disease; phenomenology; well-being