Conference Programme, Abstracts & Papers

Session 10A - Bodies: Disability, Significance and Tension
Chair: Patty Kelly

Between Defect and Disability? Problematizing Cleft Lip and Palates.
Dawn Berry
Department of History and Classics, University of Alberta, Edmonton, Alberta, Canada

In the fall of 2002 British police began an investigation into a late term abortion. The fetus was aborted after seven months, well into the third trimester of pregnancy. It was aborted because it had a cleft lip.
Under British law, abortion after the six month mark is illegal. There is an exception to the law, however, in cases where the child would have a “serious handicap.” Many would agree that a cleft lip, and/or palate is not a “serious handicap;” however, under the current system in Britain, it is left to the individual doctor to decide whether a “handicap” is serious enough to warrant an abortion. Although the case in 2002 ignited heated emotional debate over abortion, it also highlighted the lack of public education, and academic discourse on cleft lip and/or palates.
Cleft lips and/or palates are the most common facial birth defect. They can range in aesthetic severity, and often have a number of associated problems, which can include feeding, hearing, and speech. Although historically having a cleft lip drastically affected a person’s quality of life, current medical technology enables most people affected by clefts live perfectly “normal” lives.
Ironically, the medical technologies that are helping repair clefts, are also causing a new set of medical and ethical issues. Health care costs, and increased parental role in medical care, in combination with new early detection technology have forced parents, doctors, and governments to make increasingly difficult decisions.
Although there is a large body of scientific research on cleft lip and/or palates, and growing literature for parents of children with clefts, there is limited academic writing on the social aspect of subject.
Drawing from literature, popular culture, and personal narratives, this essay will highlight the liminal status of cleft lip and palate patients. Specifically, this paper will provide a brief social history of cleft lip and palates. It will then elucidate select ethical issues associated with cleft lip and/or palates with the hope of stimulating greater academic discourse, and scholarship on the subject.

The Body's Significance to Health and Disease Cochlear Implants, Quality of Life Measures, Functional Understandings of the Body
Leah McClimans

For the last fifty years health care professionals have recognized that concepts like health and disease embody not only functional norms related to the body, but also subjective factors that draw on the first-person perceptions of our health-state.  The attempt to incorporate these subjective factors into the assessment of health and disease has largely been accomplished through the use of health-related quality of life measurements.  In this paper I take a critical look these measurements with respect to studies of individuals receiving cochlear implants and I question the extent to which quality of life measures depart from functional understandings of the body.
Drawing on Amartya Sen’s criticism of John Rawls I provide an argument for the importance of an account of quality of life—and thus health and disease—that extends beyond the body.  I then argue that this account provides insight into the particular failure of current quality of life measures.  According to Sen bodies are important because they allow us to pursue our goals and thus they are necessary to quality of life, but they are not sufficient; human begins are purposive agents, not just biological units.  I argue that it is the successes and failures of purposive agents that we ought to capture as the first-person perceptions in health-related quality of life measures.  But because different individuals not only have different purposes, but also because they understand what counts as a success and failure of those purposes differently this recommendation is difficult to incorporate given the standardized nature of the measures used in quality of life assessment.  I conclude that quality of life measures remain reliant on functional norms because they narrow the acceptable range of purposes agents might have to just those that correspond to the functionings of a biologically healthy body. 

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Medical Students' Use of the Body: Challenges and Tensions
Angela Fenwick
School of Medicine, University of Southampton, Southampton, United Kingdom

During their time at medical school, students engage with the physical body in a variety of states.  Through 44 in-depth interviews with medical students, I have explored the tensions and challenges that exist for them in these encounters. 
My research focuses on the ontological status of the bodies that students encounter in the medical curriculum: dead and dissected, unconscious and conscious.  It uses the two constructs of the medical body – passive and object – and the everyday body – active and social – to explore the relationships between students and these bodies, in an attempt to understand the complexity of these interactions.  It is my contention that the curriculum does serve to support the notion of an objectified, medical body in a variety of ways and that certain normalised educational practices reinforce this.  However, the everyday body is present for students in various situations: for example, when they make a social connection with a patient. 
Integral to students experience at medical school is the notion that they need to learn from the different bodies that they encounter – dead or alive.  This inevitably leads to a sense that they use bodies for their own ends, and students must find their way through an uncomfortable and complex tension between using and, at the same time, respecting bodies.  I propose that this tension be openly discussed and that the contingent nature of both students’ and patients’ bodies need to be acknowledged.   Encouraging a view of the patient’s body as everyday – as a social ‘educating’ body – through more active involvement of patients in students’ education, might be one way to counter, or interrupt, unnecessary transformations to the medical body.