Alderson, P;
Scott, P;
Thapar, N;
(2001)
Living with a congenital condition: the views of adults who have cystic fibrosis, sickle
cell anaemia, Down’s syndrome, spina bifida or thalassaemia.
In: Ettore, E, (ed.)
Before Birth: Understanding Prenatal Screening.
(pp. 156-171).
Routledge: Taylor & Francis Group: London, UK.
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Abstract
Chapter 11 is about `Living with a congenital condition: the views of adults who have cystic fibrosis, Down‟s syndrome, sickle cell anaemia, spina bifida or thalassaemia‟. The chapter reports interviews with 40 adults who have four conditions which are screened for prenatally; screening for cystic fibrosis is also proposed in some areas. The medical model of disability identifies people‟s problems mainly with their impairments. In this chapter, the medical model is contrasted with the social model, which attributes the problems people experience mainly to disabling social barriers and negative attitudes that unnecessarily exclude them from mainstream society. Examples of tendencies in the medical model and the medical literature towards pessimism about congenital conditions, and the possible influence of these views on prenatal screening policies and counselling are reviewed. The 40 people were interviewed to see whether they fitted with the medical model. This descriptive study used social research methods, with open questions about interviewees‟ education and employment, relationships, the rewards and problems they experienced, their hopes, and their views about prenatal screening. The aim was to obtain a general impression about their sense of the value and quality of their lives. Qualitative research cannot support general conclusions but it may discover exceptions which challenge general assumptions. In each of the five groups, people narrated how they enjoyed life and achievements, and contributed to their family life and to society, as well as contending with serious problems. They mainly attributed their difficulties to social conditions rather than to their own bodies or minds. Their reported satisfactions and activities did not correlate with the type or severity of their condition. More social research is urgently needed to investigate how typical or exceptional people like these interviewees are, if the influence of medical and social models of disability on prenatal policies and counselling are to be more clearly understood, and if the services are to be evidence based.
| Type: | Book chapter |
|---|---|
| Title: | Living with a congenital condition: the views of adults who have cystic fibrosis, sickle cell anaemia, Down’s syndrome, spina bifida or thalassaemia |
| ISBN: | 0754616215 |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.4324/9781315191492 |
| Publisher version: | https://doi.org/10.4324/9781315191492 |
| Language: | English |
| Additional information: | This version is the author-accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| UCL classification: | UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10005077 |
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