Bodily Integrity in Blemished Bodies
VIDI project
NWO-Humanities
Dr. Jenny Slatman
Associate professor
Department Health, Ethics and Society
Outline
• General research question:
embodiment, bodily
identity and integrity, “deviant” bodies
• Old age – old bodies as “deviant”
• Cases in the VIDI project: disfiguring head
& neck, and breast cancer.
• Realization, approach and method
• Anticipated outcomes
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Point of departure
• Our society and culture, including health
and medicine, endorses typical ideas and
ideals of bodily perfection, wholeness and
able-ness.
• Research question: Whether and how can
bodies, ones that do not meet the present
ideal of bodily integrity, be experienced as
whole?
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Bodily Wholeness or Integrity:
(descriptive)
Integrity, stemming from integrum, literally
means being whole, intact, being a unity
• In health and medicine:
• anatomical and/or functional intactness of the body
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A phenomenological approach
• How is bodily wholeness
experienced?
• A biologically intact body is not
necessarily experienced as
whole and vice versa.
Marc Quinn, Stuart Penn (2000),
from the series The Complete Marbles.
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Bodily Integrity
(normative-practical)
• Respect for bodily integrity = basic ethical
principle (“warranted” by informed consent).
• My project’s normative claim: bodily
integrity can only be respected and
protected while taking the individual’s
embodied contextualized experience of
wholeness seriously.
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How to research bodily integrity?
• Investigating whether one is
able to identify with one’s
own body (being the body one has)
• Process of self-identification:
– Subjective
– Social – (intersubjective)
– Cultural
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Strange Body: On Medical
Interventions and
Personal Identity, Amsterdam:
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2008
“Deviant” bodies: old bodies
• Is an older person able
to identify with his or her
own “old” body, against
the background of:
– Cultural overvaluation of
youth.
– Society’s (and medicine’s)
imperatives of a “healthy”
and active lifestyle
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“Deviant” bodies: blemished bodies
How complete or whole do people with disfiguring
cancer experience their own body? What is the
relation between this experience and the way these
people deal with their blemished body?
disfiguring head, neck
and breast cancer.
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Realization of project:
3 sub-projects
1. Interpreting Bodily Experience
(Jenny Slatman)
– how to interpret “body stories” of cancer patients/
survivors?
2. Ideal shapes – shaping ideality
(PhD student:
Marjolein de Boer) – how do ideal cultural body images
influence breast cancer patients/survivors’ experiences and
choices?
3. Facing one’s loss of face
(PhD student: Gili Yaron)
–are patients with facial disfigurements (due to cancer)
capable of re-identifying with their mirror image? How?
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Beauty and the Beast
Dutch Television show, 2011
Approach
• Interpretation of various sources
(theoretical and scientific literature,
informational booklets, published illness
stories, various forms of cultural
representations)
• Collection and analysis of data
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Data collection plan
• Qualitative research methods
interviews, diary-keeping, focus groups)
(observation,
• Participants:
• breast cancer patients in course of treatment
• breast cancer survivors (> 1 year disease free)
• head & neck cancer survivors (> 1 year disease free)
• Others involved (family, medical professionals)
• Research sites: MUMC oncology center, NKIAVL head & neck oncology and surgery
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Analysis and results
• IPA (interpretative phenomenological analysis): How
do people make sense of their bodily
self-experiences?
– Coding of data (NVivo)
– Identifying patterns and themes
• Developing an empirical sound
“vocabulary” of bodily experiences
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Deliverables for oncology care practice
• Tools (e.g. check list) for making explicit bodily
self-experiences.
– Counseling: e.g. surgical reconstruction
• Incorporation in information booklets.
• Evaluation of shared treatment decision
models.
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The wide-ranging perspective
• Demanding attention for
embodied self-experiences
implies an alternative body
paradigm in health and
medicine:
– Leaving Cartesianism in medical
sciences and in behavioral
sciences
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Thank you for your attention!
Questions?
Email: jenny.slatman@maastrichtuniversity.nl
www.jennyslatman.nl
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