"It Gives Me My Freedom": Technology and Responding to Bodily Limitations in Motor Neuron Disease

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.