Growing up with a Childhood Liver Transplant: Medical ‘Pioneers' and Beck's Normativity of Diversity

The concept of a stable biographical narrative and its potential undermining by long term health conditions is one that underpins much medical sociology. This is particularly true of chronic illness rather than acute conditions constituting forms of biographical disruption. More recently, the influence of approaches derived from theories of reflexive modernity have started to challenge the salience of the modernist or standardised life course, introducing notions of indeterminacy and contingency into how individuals construct individualised narratives of the self. Consequently, health conditions can constitute identity rather than be threats to it. Ulrich Beck has also argued that not only is reflexive modernization (or second modernity) constituted by the ‘side effects’ of modernist discourses such as those surrounding the welfare state or modern science but that this has also given rise to a ‘normativity of diversity’ which has replaced the more simple normativity of previous societies. This is not only witnessed in terms of the makeup of household structures, sexuality, marriage and employment but also extends to notions of health, disability and human embodiment.

This presentation will look at how social theory can help us understand the situation of the cohort of adults who were the first European recipients of liver transplants as children. The first childhood liver transplants took place in the early 1980s and this group has had to act as a ‘pioneer’ cohort all through their lives, dealing with the risks of transplant surgery, underlying syndromes, comorbidies and side-effects of medication as previously unencountered phenomena. Through analysis of in-depth interviews with 27 now-adult survivors of this cohort, we report how both biographical narrative is constructed in the face of ever present risk and how these ‘pioneers’ represent aspects of the normativity of diversity.