Taking Action for the Recognition of a Lay Expertise over the Body : A Narrative Based Activism ? the Case of Breast Cancer Patients' Organisations

For thirty years, biomedicine is characterized by the development of clinical, organizational and legal structures that promote the “narrative based medicine”. These structures are expected to strengthen the “humanization of care” and the “patient participation in decision-making”, but they also inherently contain a risk of strengthening the social control of the patient, especially in cases where these narratives are used to assess the legitimacy of the patient’s demand for a medical intervention. According to Memmi (2003), a consequence of the development of the “narrative based medicine” for the therapeutic activism is the focus on issues related to the body, evidenced by the emergence of feminist and LGBTQ movements in the early 1970s and, more recently, the mobilization against the AIDS epidemic and the increase of patients’ organisations. Therefore, how to think, in the same analytical framework, the incentives to produce subjective narratives of the body in the privacy of the medical practice and the public claims for recognition of a lay expertise over the body from the patient’s organisations? My PHD thesis focuses on the shaping of an experiential expertise in and by the French-Belgian breast cancer patient’s organisations, a pathology strongly subject to the incentive to produce narratives because of the impairment to the performative femininity. In this paper, I propose on the one hand, a reflection on the theoretical and methodological challenges that seem to be facing the researcher when (s)he studies the political resistance in this medical context and, on the other hand, based on examples from my fieldwork, an illustration of how these activists frame their critique of the system through their personal awareness of the illness experience, transforming this awareness into a “politicized collective illness identity” (Brown et al. 2004) holding legitimacy from the discursive operation of generalization - from the singularity to the collective experience.