chapter  5
18 Pages

The desperate search for causes and cures for motor neurone disease

Although biomedically the causes of most types of MNDlALS are only beginning to be unravelled, with a likely genetic susceptibility compounded by environmental factors of some kind being a significant component, the quest for explanations in their personal histories by people with MND/ALS and their families as to why they have individually fallen prey to this condition is intense. Such a quest is a normal process that operates in relation to any untoward event, especially illness, which disrupts the usual flow of people’s lives. In societies in Europe and North America in particular, where the focus is on the relatively autonomous role and personal standing of individuals, attention is especially drawn to those elements for which those individuals might have some (moral) responsibility. In this process the focus is not only on explanation, but, as Harris points out, also on interpretation:

whatever the institutional contextualisation [hospitals, clinics, etc.], illness and injury must remain events in personal histories. As such they call everywhere not only for explanation but also for interpretation . . . Both explanation [identifying a cause for an event] and interpretation [identifying a reason for it] imbue an event with meaning. They differ importantly however. Explanation deals with elements and processes locally taught as truths about the way the world works. Interpretation suffuses events with evaluative significance. Explanation is about mechanism while interpretation is about morality, broadly conceived.