Collaborating with Parents of Disabled Babies: Narratives of Resistance

The linear heroic narrative constitutes a dominant theme within Western culture.
Assuming a correct way of living one’s life, this linear narrative is individualistic;
competitive and orientated towards the future rather than the present. It craves certainty
and places great trust in modernist interventions such as medicine, the market place and
the professional expert. In the lifeworlds of parents of disabled babies, this narrative
threatens to reinforce professional boundaries and hierarchies. Disempowering
interpretations of disability and impairment are ubiquitous. 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 quest’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. Parents interpret uncertainty as
opportunity and recognise that other people’s lives may be influenced by external factors.
This very recognition encourages the development of tropes which present a stronger
sense of communal responsibility: developments which narrative researchers must
engage with.