Bodily Integrity in Blemished Bodies VIDI project NWO-Humanities Dr. Jenny Slatman Associate professor Department Health, Ethics and Society

2 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

Department Health, Ethics and Society 3 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?

Department Health, Ethics and Society 4 Bodily Wholeness or Integrity: (descriptive) In health and medicine: anatomical and/or functional intactness of the body Integrity, stemming from integrum, literally means being whole, intact, being a unity

Department Health, Ethics and Society 5 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.

Department Health, Ethics and Society 6 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.

Department Health, Ethics and Society 7 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 Strange Body: On Medical Interventions and Personal Identity, Amsterdam: 2008

Department Health, Ethics and Society 8 “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

Department Health, Ethics and Society 9 “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.

Department Health, Ethics and Society 10 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?

Department Health, Ethics and Society 11 Approach Interpretation of various sources (theoretical and scientific literature, informational booklets, published illness stories, various forms of cultural representations) Collection and analysis of data Beauty and the Beast Dutch Television show, 2011

Department Health, Ethics and Society 12 Data collection plan Qualitative research methods (observation, interviews, diary-keeping, focus groups) 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, NKI- AVL head & neck oncology and surgery

Department Health, Ethics and Society 13 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

Department Health, Ethics and Society 14 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.

Department Health, Ethics and Society 15 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

Department Health, Ethics and Society 16 Thank you for your attention! Questions?