Abstract
Research into issues of deafness is characterised by the dominance of the medical model of disability. Although social and cultural-linguistic models have received increasing attention from scholars, they have been used mainly in theoretical debate. Empirical application has been limited. Based on our comprehensive research project into the care-related decisions of parents of congenitally deaf children in Flanders, Belgium, an explanatory model for care-related parental decisions was constructed, which transcends the specific findings generated by our studies. This model is presented and discussed in this paper. Illustrations are provided based on our empirical findings.
Highlights
Since the development of modern medicine, an increasing range of tools has become available to define and treat illness and disability, thereby assigning persons who are ill or have a disability to a certain position in society
It is true that empirical research shows that the influence of the medical model on parents’ care-related experiences and decision-making is strong (e.g. Kluwin and Stewart 2000), which is hardly surprising given that over 90% of congenitally deaf children are born to hearing parents, who Á as opposed to deaf parents Á have no experience of deafness or Deaf identity (Vaccari and Marschark 1997)
This is illustrated by our earlier description of many deaf parents in our sample (Hardonk et al 2011b) who discursively advocated a construction of deafness that is best described as cultural-linguistic, but expressed the preference that their child should develop spoken language as an important secondary language, not because they adhered to a medical model of deafness, but because they expected that mainstream placement offered the best educational opportunities
Summary
Since the development of modern medicine, an increasing range of tools has become available to define and treat illness and disability, thereby assigning persons who are ill or have a disability to a certain position in society. Theoretical arguments for a cultural-linguistic approach to issues of congenital deafness such as CI and PGD have been provided (Sparrow 2005, 2010; Lane 1995, 2005), but never is empirical insight presented about parents’ experiences in these issues This lack of empirical evidence for confronting conceptual frameworks is an issue with many cultural-linguistic and social model studies regarding deafness, not limited to the work by Sparrow, Lane, Ladd, Padden and Humphries. Social and cultural-linguistic models risk being considered by some as mainly theoretical constructions, which depend on the dominance of the medical model to legitimise their very existence This situation has inspired our empirical research project that was aimed at the analysis of parents’ experiences and decisions related to their congenitally deaf child’s care trajectory. Full methodological accounts and results have been published elsewhere (Hardonk et al 2010a, Hardonk et al 2010b, Hardonk et al 2011a, Hardonk et al 2011b)
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