Losing touch: the haptic in the lived experience of motor neurone disease

Allen-Collinson, Jacquelyn and Pavey, Amanda (2016) Losing touch: the haptic in the lived experience of motor neurone disease. In: British Sociological Association Annual Conference, 6-8 April, Aston University.

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Item Type:Conference or Workshop contribution (Paper)
Item Status:Live Archive


Currently, there is somewhat of a research lacuna with regard to sociological phenomenological research into the lived-experience of motor neurone disease (MND), a terminal, neurodegenerative disease where the motor neurons in the cortex, brainstem and spinal cord gradually diminish in number until lost entirely. Based on data from a three-year qualitative research project undertaken in the UK and Australia, involving interviews and email correspondence with 42 participants clinically diagnosed with MND, in this paper we explore from a sociological-phenomenological perspective our participants’ in-depth accounts of their own lived-body experiences of this disease. Calls have been made for sociological researchers to examine and analyse more fully and deeply the sensory dimension of the lived-body, including within health and illness studies, and this paper contributes to this newly developing corpus. As sociology – and the social sciences in general - has been accused of a high degree of ocularcentrism, in this paper we explore the haptic dimension of the illness experience. Touch, and particularly the loss of key elements of the haptic, emerged clearly in participants’ narratives. Here we focus on two key themes identified by participants as salient in their changed mode of being-in-the-world with MND: (i) losing touch: the loss of certain forms of touch within MND; and (ii) unwelcome touch by medical staff.

Keywords:Sociology, Phenomenology, Sociological phenomenology, Motor Neurone Disease, Haptic, Senses, Touch, Sociology of illness
Subjects:L Social studies > L300 Sociology
Divisions:College of Social Science > School of Sport and Exercise Science
ID Code:22857
Deposited On:09 Apr 2016 19:10

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