panel 19 Testimonies of Living, Testimonies of Dying
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.
Testimonio(s) as a Healing Informed Method Rooted on the Praxis of Care and Love
Joana Chavez
This paper centers the critical method of testimonio as a healing-informed approach – used as a way to tell our truth, our experience, our story with honesty, without the fear of being judged, criminalized, or punished. I argue that using testimonio is an abolition tool that allows us to heal, reconnect, and reignite our passion for learning, caring, and loving. I am posing the following questions: How can testimonio help us create community-centered research? How are testimonio(s) and healing interconnected? How can we center methodologies that do not extract our communities and prioritize their needs and stories? How are listening and sharing testimonios acts of care? In my dissertation work, I draw on testimonio methodology to provide narratives of racial and gendered violence from the State toward young women of color who are incarcerated in home-like places (group homes). Testimonio has a long history, most often seen as a voice from the margins or the subaltern. Widely used as a methodology originating from Latin America, it is deeply grounded in the collective history of resistance. In my work, however, I use collective testimonio as a healing-informed method that is both life-changing and powerful, while also allowing for the possibility of staying anonymous at times. I argue that testimonio is a strong method to utilize when narrating vulnerable experiences and collecting histories/data. My research centers on the experiences of young women of color and by doing so, sometimes provides the first time they have the opportunity to speak about their lives. Through testimonio, this research makes visible community-authored knowledge.
Joana Chavez is a first-generation student raised in the Inland Empire. She attended Mt. San Jacinto College and then transferred to University of California, Riverside, where she got her BA in Ethnic Studies and Spanish. She is currently a PhD candidate in Chicana/o and Central American Studies at the University of California, Los Angeles, where she researches gendered carceral spaces (youth group homes) and uses testimonios to uplift young women of color’s voices in these spaces in the Inland Empire. Since 2018, she has been part of Million Dollar Hoods Project, a community-driven and multidisciplinary initiative documenting the human and fiscal costs of mass incarceration in Los Angeles. Currently, she is part of Archiving the Age of Mass Incarceration Initiative Project at UCLA where she is invested in abolishing violent systems that harm communities of color. She enjoys being surrounded by her community, family, and in nature to ground herself.
“This is a Living Document”: Reading ACT UP Philly’s Social Poetics of Care
Libbie Rifkin
Researching the Black gay literary renaissance of the 1980s and 90s at the William Way LGBT Community Center archives in Philadelphia, I found a remarkable document, a running account of the AIDS activist Kiyoshi Kurimiya’s last days. A rotating group of friends and younger activists kept a vigil in his hospital room, advocating for his treatment preferences and supporting him in dying. On loose-leaf paper in at least five different hands, they recorded the experience in a range of genres: part medical chart, part meeting minutes, part living memorial of Kurimiya’s thoughts, feelings, and especially his humor. It is his humor that I still remember nearly thirty years after my own stint in ACT UP Philadelphia when I was a graduate student.
In this paper, I explore ACT UP Philadelphia’s structures of care through a close analysis of the materials surrounding Kurimiya’s death as well as the convergence of activist traditions that shaped his activist life and legacy. A veteran of the Civil Rights and anti-war movements, Kuromiya co-founded ACT UP Philly in 1988 and launched its groundbreaking patient-centered Standard of Care, which was revised at least fifteen times throughout the 1990s. In 1989, Kurimiya created the Critical Path Project, a 24/7 support hotline and Bulletin Board System (BBS) committed to sharing the latest research and clinical trial opportunities. Kurimiya was an early adopter of online technologies, often remediating them in print form to reach across the digital divide. In his development of multimodal strategies for interpreting and disseminating life-saving information, he was an early practitioner of what we now call Universal Design for Learning (UDL). Engaging with the archive of the Standard of Care and the Critical Path Project, alongside evidence of intimate, collective practices of care like the hospital vigil notes and interviews with former and current ACT UP Philly activists, I trace the outlines of the organization’s structure of care. I argue that its unique combination of mutual aid and UDL draws on the legacy of Black feminist and queer kinship traditions, re-making them for a digital age and presaging the work of contemporary disability communities surviving the pandemic.
Libbie Rifkin is a Teaching Professor in the Department of English and was the founding Director of the Program in Disability Studies. She is currently the program's associate director. Rifkin teaches courses in modern and contemporary American literature and gender, race, and disability studies. Her two books include the co-edited collection, Among Friends: Engendering the Social Site of Poetry (2013) and Career Moves: Olson, Creeley, Zukofsky, Berrigan, and the American Avant-Garde (2000). She has published numerous articles on gender, poetry, and, most recently, the poetics of care. Rifkin also serves as the first Special Advisor to the Vice President of Diversity, Equity, and Inclusion for Disability.
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
Contact info Louis van den Hengel
Images homepage: Merel Visse, Christine Leroy
design website: Johanne de Heus and Marielle Schuurman