“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 wellbeing. 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. Much research on MND emphasises reduced mobility and ability to communicate as the most debilitating aspects of the disease (Leigh et al. 2003, Brown and Addington Hall 2008, Hughes et al. 2005. Constantly changing symptoms impact progressively on both sufferer and caregivers, as the individual's lifestyle becomes increasingly restricted (McCabe, Roberts, and Firth 2008; Sakellariou 2015). The lived experience of MND reflects experiences of chronic illness more broadly, including generating feelings of isolation, loneliness, and being a burden to others, in addition to financial pressures, but it is a unique and particularly debilitating illness (Charmaz 1993, Jeon et al. 2009, Vassilev et al. 2010, Sakellariou 2015.Much has been written about the challenges of living with MND (Robinson and Hunter, 1997), but with little attention given to how people obtain a sense of positivity or wellbeing despite these restrictions. Employing a phenomenological framework (Allen-Collinson and Hockey 2011, Pavey, Allen-Collinson and Pavey 2013), in this article we explore how forms of enabling technology and technological aids can enhance quality of life for people living with MND, and in doing so, highlight the tensions that sometimes emerge in living in and through a 'blended body' (Pavey 2013). We draw extensively on the idea of 'bodily auxiliaries', a concept that describes the relationship between the body and matter that is not organically attached, yet which ceases to be an external object (Merleau-Ponty 1962) and rather becomes a bodily extension. This focus on embodiment -and the social and cultural ways in which people 'live' their bodies in everyday DIFFERENT MODES OF BODILY BEINGA healthy 'normal' body has been conceptualized as one that recedes into the background of conscious thought, and comfortably disappears (Leder 1990). This is a body that is to some extent un-mediated, hidden, and 'recessive' so that a person is not overtly awar...

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