The linear medical model of disability: mothers of disabled babies resist with counter‐narratives

Abstract

This paper draws on the narratives of parents of disabled babies in order to conceptualise notions of enabling care. This analysis emerges from the Sheffield site of an ESRC research project Parents, Professionals and Disabled Babies: Identifying Enabling Care , which brings together the Universities of Sheffield and Newcastle-upon-Tyne. The linear heroic narrative is a dominant theme within Western culture. It is competitive and individualistic and tends to be futureorientated in that actions conducted in the present are evaluated according to later outcomes. This linear narrative places much store on modernist interventions such as medicine, and tends to uphold professional boundaries and hierarchies. In the lifeworlds of parents, usually mothers, 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 counternarratives which, at times, resist linear life models and free parents 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 develop stories that are neither linear nor heroic but present and becoming.

Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France

“…The label reduced stigmatization and enabled them to find assistance for their child. It is overwhelmingly the mothers who are the primary carers of children, especially when the child is disabled (Landsman 2003;Fisher and Goodley 2007;Read 2000), and the responsibility for the child"s behavior is often attributed to the mothers (Gray 2003).…”

“…In the case of autism, the French association of autistic persons aims to help autistic persons and their families whereas the international activist movements define autism as another mode of functioning, and stress the positive and creative features associated with "neurodiversity" (Baker 2011;Chamak 2010;Orsini and Smith 2010;Ortega 2009;Singer 2003). Alternative narratives that recognize diversity are still unusual in France compared to the UK (Fisher and Goodley 2007) because disability studies and the disability movement have not developed (Chamak 2010) Their narratives are organized by notions of identity and reconstruction. They sometimes develop counter-narratives which, at times, go against the medical model and enable parents to enjoy their children as they are (Fisher and Goodley 2007).…”

“…Alternative narratives that recognize diversity are still unusual in France compared to the UK (Fisher and Goodley 2007) because disability studies and the disability movement have not developed (Chamak 2010) Their narratives are organized by notions of identity and reconstruction. They sometimes develop counter-narratives which, at times, go against the medical model and enable parents to enjoy their children as they are (Fisher and Goodley 2007). Although these narratives incorporate a medical diagnosis and explanation regarding their children, this shapes, but does not define, their experience of impairment.…”

Empowering interventions in health and social care: Recognition through ‘ecologies of practice’

“…We argue that these practices are central if social and health care interventions are to be genuinely 'empowering'. By stressing the value of experiential knowledge, commonly associated with the 'private' sphere, this article builds on previous analyses that have articulated feminist 'ethics of care' and have challenged normative notions of citizenship based on economic selfsufficiency (Fisher, 2007;Fisher et al, 2007;Kittay, 2002;Sevenhuijsen, 1998;Williams 1999Williams , 2001Williams , 2002.…”

‘The Human Prerogative’: A Critical Analysis of Evidence-Based and Other Paradigms of Care in Substance Abuse Treatment

“…Poststructuralists criticize the denial of post-modern approaches and the lack of collaborative, empowering and inclusive methodologies in evidence-based medicine [52,53]. They state that the negation of post-structural approaches in science stands for conservatism and a lack of social activism and compassion for the underprivileged [54].…”