Parents, professionals and disabled babies: narrative analyses

This paper draws on the narratives of parents of disabled babies in order to conceptualise notions of enabling care. The linear heroic narrative is a dominant theme within Western culture. It is competitive and individualistic and tends to be future-orientated in that actions conducted in the present are evaluated according to later outcomes. The linear narrative places much store in modernist interventions such as medicine and tend to uphold professional boundaries and hierarchies. In the lifeworlds of parents of disabled babies, this narrative can reinforce disempowering interpretations of disability and impairment. On the basis of 25 in-depth interviews, accompanying stories and ethnographic data, this paper suggests that parents are developing counter-narratives which resist linear life models. These include a ‘narrative of challenge’ that embraces greater diversity and tolerance and a ‘philosophy of the present’ which involves liberation from the fight for the future, freeing parents to enjoy the present as it is: to enjoy their children as they are. If life is perceived as an open book rather than as a concluding chapter, parents are able to interpret uncertainty as opportunity and to develop stories that are neither linear nor heroic but which transcend conventional notions of normality and abnormality