Skip to content Skip to navigation
University of Warwick
  • Study
  • |
  • Research
  • |
  • Business
  • |
  • Alumni
  • |
  • News
  • |
  • About

University of Warwick
Publications service & WRAP

Highlight your research

  • WRAP
    • Home
    • Search WRAP
    • Browse by Warwick Author
    • Browse WRAP by Year
    • Browse WRAP by Subject
    • Browse WRAP by Department
    • Browse WRAP by Funder
    • Browse Theses by Department
  • Publications Service
    • Home
    • Search Publications Service
    • Browse by Warwick Author
    • Browse Publications service by Year
    • Browse Publications service by Subject
    • Browse Publications service by Department
    • Browse Publications service by Funder
  • Help & Advice
University of Warwick

The Library

  • Login
  • Admin

Experiential knowledge of disability, impairment and illness : the reproductive decisions of families genetically at risk

Tools
- Tools
+ Tools

Boardman, Felicity K. (2014) Experiential knowledge of disability, impairment and illness : the reproductive decisions of families genetically at risk. Health: Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, Volume 18 (Number 5). pp. 476-492. doi:10.1177/1363459313507588

[img]
Preview
Text
WRAP_Boardman_0970314-mg-260813-experiential_knowledge_of_disability_impairment_and_illness.pdf - Submitted Version

Download (684Kb) | Preview
Official URL: http://dx.doi.org/10.1177/1363459313507588

Request Changes to record.

Abstract

As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that ‘experiential knowledge of disability’ plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes ‘experiential knowledge of disability’ and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of ‘disability’, ‘embodied experiences of impairment’ or ‘embodied experiences of illness, death and bereavement’ are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching ‘experiential knowledge of disability’ within these contexts which are able to account for the various contours of the embodied lived reality of life with ‘disability’.

Item Type: Journal Article
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > R Medicine (General)
R Medicine > RG Gynecology and obstetrics
Divisions: Faculty of Medicine > Warwick Medical School > Health Sciences
Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Reproductive health, Families -- Health and hygiene, Genetics, Sociology of disability, Human chromosome abnormalities -- Diagnosis
Journal or Publication Title: Health: Interdisciplinary Journal for the Social Study of Health, Illness & Medicine
Publisher: Sage Publications Ltd.
ISSN: 1363-4593
Official Date: September 2014
Dates:
DateEvent
September 2014Published
6 November 2013Available
Volume: Volume 18
Number: Number 5
Page Range: pp. 476-492
DOI: 10.1177/1363459313507588
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Restricted or Subscription Access
Funder: Economic and Social Research Council (Great Britain) (ESRC)
Grant number: PTA-031-2005-00137

Request changes or add full text files to a record

Repository staff actions (login required)

View Item View Item

Downloads

Downloads per month over past year

View more statistics

twitter

Email us: wrap@warwick.ac.uk
Contact Details
About Us