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Re-imagining Death, Dying, Loss, and Grief
Care as Transformation: A Critique from the Perspective of Loss and Grief
Mai-Britt Guldin & Carlo Leget
According to a well-known definition in care ethics, care is defined as “everything that we do to maintain, continue, and repair our ‘world’ so that we can live in it as well as possible” (Tronto, 1993, p. 103). Acknowledging the great importance of this definition for the development of care ethics in the past thirty years, in this contribution we intend to take a next step, building an argument against its inherently conservative nature. Our argument is based on recent scientific research on loss and grief (taken in a broad sense, encompassing all losses people suffer in life), which suggests that life is a dynamic process full of losses that do not ask for repair but for transformation. Acceptance of the vulnerability and finitude of human life prompts us to face the existential dimension of our human condition and develop from a life of self-preservation towards a decentered way of life that acknowledges the ways in which human beings are indebted to and intertwined with other forms of life. In this transformation art and aesthetics play an important role because of their transformative potential and their ability to open up to the existential dimension of human life that is connected to taking responsibility for ourselves and others. All art that is not transformative is entertainment. Only when caring is understood as a transformative practice, it can contribute to a more just and inclusive world.
In this presentation we will draw on work of Tronto (1993), Yalom (1980), Cholbi (2022), O’Connor (2022), Thompson (2022), Guldin & Leget (2023; 2024).
Senior Researcher Mai-Britt Guldin, PhD, is a psychologist and senior researcher at Research Unit for General Practice and Department for Public Health, Aarhus University, Denmark, and director of the Center for Loss and Existential Values in Aarhus. Her research focus is on loss, grief, and end of life issues and for years she chaired her own research program and authored several books about loss and grief. https://sorgogeksistens.dk/about/
Professor Carlo Leget, PhD, is Full Professor of Care Ethics and research director at the University of Humanistic Studies in Utrecht, the Netherlands, and director of the Center for Loss and Existential Values in Aarhus. As chair of the care ethics department, he is responsible for the Master in Care Ethics & Policy at his university, and his research focuses on the intersection of care, meaning and end of life issues. Since 2015 he is a member of the Health Council of the Netherlands and the Care Ethics Research Consortium. https://www.uvh.nl/contact/vind-een-medewerker/carlo-leget
Using Art-Based Research to Bear Witness, Testify, and Transmit the Lived Experience of Dying in the Margins
Els van Wijngaarden, Mariska van Zutven & Dominique Girard
In qualitative research, one of the roles of the researchers is collecting stories as a heritage to future readers. A reciprocal process is at play, where participants offer the gift of a story, and the researcher gives back by acknowledging, interpreting and transmitting the story with care. This is especially relevant in the context of research projects involving less-heard voices. Thus, telling and retelling stories is a form of acknowledgment, which can be understood as a form of care (Van Wijngaarden et al., 2021). Researchers can facilitate this reciprocal dynamic by adopting a posture of openness, sensitivity, and reflexivity (Bourgeois-Guérin & Beaudouin, 2021).
In this presentation, we will discuss how art-based hermeneutical research can be a way to bear witness, reaffirm, reinterpret, and actualize stories creatively through transmission, inspired by the work of Jacques de Visscher (2008). To exemplify this, we will draw on an interdisciplinary art-based project titled “Dying in the Margins” about the lived-experience of dying while being relatively isolated. Mariska Van Zutven, a Dutch photographer, captured the story of people dying in the margins by taking photographs of their houses shortly after they died.
Through photography, Van Zutven allowed us to develop an increased sensitivity to the phenomenon of dying in the margins, but also to position ourselves as witnesses of these unique experiences. This art-based project speaks not only of the experience of dying while being relatively isolated but also, more broadly, about the finite condition of human existence, decline, loneliness, isolation but also resilience. The fact that Van Zutven’s photographs are presented and viewed today, not only as an archaeological trace but as a story that can touch and engage us emotionally, shows that art carries the potential to transmit the experience of the less-heard voices of people dying in the margins.
References Bourgeois-Guérin, V. & Beaudoin, S. (2016). La place de l’éthique dans l’interprétation de la souffrance en recherche qualitative. [The place of ethics in the interpretation of suffering in qualitative research]. Recherches qualitatives, 35(2), 23–44. https://doi.org/10.7202/1084379ar
Van Wijngaarden, E. (2021). The darker side of ageing: Towards an ethics of suffering that emphasizes the primacy of witnessing. Journal of Population Ageing. 14. 323-342. https://doi.org/10.1007/s12062-021-09331-9
Visscher, J. (2008). Tradition, continuité, créativité [Tradition, continuity, creativity]. Cahiers du CIRP, 2, 39-45.
Dominique Girard holds a PsyD/PhD in psychology – research and intervention from the University of Quebec in Montreal (UQAM). She has been working as a psychologist in existential-humanistic psychotherapy. Dominique Girard is a postdoctoral fellow in the Anesthesiology, Pain, and Palliative Medicine department at Radboud University Medical Center. She is particularly interested in end-of-life trajectories and the relational dynamics unraveling in such contexts. Her research methodologies are inspired by phenomenology and ethnography and include multi-perspective and longitudinal approaches. She also loves to be involved in art-based research drawing from hermeneutics and phenomenology, using photography, painting, and poetry.
Mariska van Zutven is a documentary photographer and academic tutor in photography, living in the Netherlands. She is interested in documenting her immediate surroundings and questioning the role of photography in representation. How photography can (mis)represent people's lives affects her personally. Her projects mainly focus on stereotyping and media influence and look for new perspectives into one-sided and incomplete representations.
Els van Wijngaarden, PhD, is a care ethicist and Associate Professor in Contemporary Meanings of Ageing and Dying at the Radboud University Medical Center in Nijmegen in the Netherlands. Her line of research concerns ethical and existential questions regarding death and dying in old age, with a specific interest for the role of choice and control at the end-of-life. She was educated in religious studies and interfaith spiritual care (MA, at VU University Amsterdam). Prior to her work in care ethics and health humanities, she worked as a health chaplain in the care for older people, people with Korsakov, and people with mental disabilities.
Out of Love, Out of Necessity
Tjitske Sluis
As a documentary photographer with a background in photojournalism and humanistic studies, I aim to illuminate the profound impact of care within society through visual storytelling. Through a lens focused on themes of sickness, disability, death, and the complexities of caregiving, my work delves into the intricacies of human vulnerability and interdependence that are often kept in the shadows. In doing so, I seek to explore photography’s potential as a form of artistic research that can help foster a visual ethics of care when words fail.
During this talk, I will discuss the documentary exhibition entitled “Out of Love, Out of Necessity”, featuring an award-winning series of photographs documenting my mother’s final four months. These images show the delicate balance between loss of autonomy and the complex act of surrendering it, portraying the things we face when we die, as well as the challenges faced by caregivers when they help, or feel forced to help. Each image serves as a visual narrative, inviting contemplation on the ethics and aesthetics of care at life’s end, while simultaneously evoking intense feelings of love, care, grief, missing, and pain.
Tjitske Sluis is a Dutch photographer based in Utrecht, the Netherlands, who came to photography through journalism. At the Dutch newspaper Dagblad De Limburger, she found herself drawn to the storytelling power of photographs, developing a career in reportage before going freelance as a documentary photographer. Sluis’ moving series Out of Love, Out of Necessity documents the photographer’s mother during the final stages of her life, while Sluis cared for her. Sluis’ camera became an important coping device during this period of grief and disorientation and her mother, Teuntje, found a tension-relieving humour in being photographed as they created the series together. The series is about vulnerability, transience, and learning how to cope with the death of a loved one, capturing tender, intimate moments. Empowered to use her photography to bring about meaningful change, Sluis is now pursuing a master’s degree in care ethics.
Location
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
30-31 January 2025 (Zoom links to be published later)
Contact info Louis van den Hengel
Images homepage: Merel Visse, Christine Leroy
design website: Johanne de Heus and Marielle Schuurman