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ORIGINAL RESEARCH article

Front. Sociol.
Sec. Sociology of Emotion
Volume 9 - 2024 | doi: 10.3389/fsoc.2024.1410240
This article is part of the Research Topic Affecting, Emoting, and Feeling Disability: Entanglements at the Intersection of Disability Studies and the Sociology of Emotions View all articles

Present(ed) Bodies, Absent Agency: 'Patients' perspectives' at the Museum Vrolik of the body and medicine

Provisionally accepted
  • Vrolik Museum, Amsterdam, Netherlands

The final, formatted version of the article will be published soon.

    Medical exhibits are complex spaces, especially when displaying human remains. This research focuses on Amsterdam's Museum Vrolik, a prominent museum of the body and medicine in the Netherlands with an important role in the conservation and exhibition of the material heritage of Dutch medicine of the 18th and 19th centuries. I am interested in the affective encounters that are at play in such a setting between us -the living -and the remains on display: How the agency and subject-hood of those who lived and live with ill health, medicalization and disability are effectively present and absent in the context of affective influences in the Museum Vrolik. I deploy the concept of 'patients' perspectives' as a conceptual tool for looking at those who have been impacted by medicine's medicalizing gaze and handling. Their presence/absence is investigated by using embodied inquiry to attend to the affective encounter between the audience and the bodily remains on display, as felt through the embodied experiencing of visiting the exhibit and mediated by the cultural, physical and institutional context and curation of the Vrolik itself. To analyze the resulting data, I take the museum as a site of storytelling with its curatorial techniques and texts acting as narratological frames and 'orientation devices'. The most central pattern emerged as a dissonance between the affective orientation I bring into the space due to my own situated-ness and the orientations prompted by the museum's frames. The remains on display have been decontextualized from their original home as a part of someone, and transformed into 'specimens'. At the same time, my lived experience and identity as a person with chronic illness, brought an impulse/intensity towards identification and closeness to the 'specimens', grasping for a sense of their agency, voices, perspectives, personhood. To move forwards from here, persons with disabilities, illness, bodily differences, impairment and injury, need to be included and recognized in their capacity as knowers, as having vital embodied knowledge, via their lived experience, as narrators and subjects in the stories that are told.

    Keywords: Affect, embodiment, Medical museums, illness, Disability, narratives, Critical Health Humanities

    Received: 31 Mar 2024; Accepted: 21 Oct 2024.

    Copyright: © 2024 Lafleur. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Azia Lafleur, Vrolik Museum, Amsterdam, Netherlands

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.