Abstract

Currently, there is a relative research lacuna with regard to in-depth qualitative research into the subjective, lived experience of Motor Neurone Disease. Based on a sociological research project in the UK, involving 42 participants diagnosed with MND, this article explores the potential of a phenomenological sociology for analysing experiences of this drastically life-limiting neurological disorder. Calls have been made for sociological researchers to analyse more fully and deeply the sensory dimension of the lived body, and this article also contributes to this newly-developing literature. Whilst the social sciences have been accused of a high degree of ocularcentrism, here we take forward the literature by specifically focusing upon the haptic dimension, given that touch – and particularly the loss of key elements of the haptic – emerged as particularly salient in MND patients’ accounts. Whilst touch between nurses and patients has been discussed within the nursing literature, little research has utilised a phenomenological-sociological lens to explore patient perspectives. To illustrate the potential of our theoretical perspective, we consider two specific haptic themes that emerged as salient: 1) being out of touch: the loss of certain forms of touch within MND; and 2) unwelcome touch by medical staff.