Capital transactions, disruptions and the emergence of personal capital in a lifeworld under attack

Abstract

Focusing on the experiences of parents caring for their children with Batten disease this article gives an overview of Batten disease as an exemplar of a long-term disabling, degenerative condition characterised by an omnipresence of biological pathology and consequence – represented, adumbrated and organised primarily through biomedical expertise. The utility of Bourdieu's concepts of field, capital and habitus is explicated and illustrated using data from an in-depth qualitative study on Batten disease. Through applying Bourdieusian constructs, we argue that it is possible to heuristically describe a Batten field militated by the biology, with forms of capital that accord to, and represent, biomedical interest and expertise. However, we illustrate a new form of capital that develops – personal capital – borne from systematic exclusion from existing forms of capital, and the sequestration of available capital in the field by expert systems that leave parents with an acutely aware, reflexive stance rooted in responding to ‘everyday’ lifeworld. This acts as a sounding board producing new personal systems of valuation seen here as ‘personal capital’. This personal capital allows the person to reject, harness, filter and ‘trans-value’ other forms of capital in light of their immediate circumstances, and personal pursuits in the lifeworld.