Sensing Care: Poetic and Multisensory Approaches to Healthcare Environments

This paper explores the role of the sensory environment for people who are seriously ill or at end of life, using poetic inquiry as a rich, arts-based approach to sensory ethnography. Poetry offers a unique way to capture the essence of embodied experiences within healthcare environments.

Poetry can help to convey the lived sensations of patients—sights, sounds, touch, and kinesthetic feel of the hospital—while also unveiling the emotional undercurrents that run through these spaces. As people face the profound realities of illness, poetry evokes the complexity of navigating life and death in the sensorial environment of an institutional space. The paper explores how poetry can reflect the sensorial materiality and emotionality of the hospital environment, illustrating how it can distill the affective atmospheres within patient rooms. Drawing on a phenomenological framework, it contends that poetry filters the senses, offering insight into the emotional and sensorial, embodied worlds of care. The project uses an autoethnographic poem created in the palliative ward, with the prompt "What to bring to the bedside?" to explore the sensory design of a dying patient’s room. Poetic inquiry, this paper argues, creates space for the often-unspoken feelings of patients and caregivers. In the act of writing and reading poetry, caregivers and patients find a shared space for empathy, healing, and the rekindling of purpose in the liminal world of care. By capturing and filtering embodied experiences through a sensory and phenomenological lens, poetry contributes to the delivery of compassionate care in emotionally charged hospital environments.

Keywords: Sensory Ethnography, Sensory Inquiry, Poetic Inquiry, End of Life/Serious Illness, Healthcare Environments

Desiree Foerster (Cinema and Media Studies, University of Chicago, USA)

A Disorientation of the Senses – New Forms of illness Narrative in Virtual Reality

This presentation engages with the conference themes “Medicine” and “Critical Disability Studies.” Using concepts from critical phenomenology, critical disability studies, and media theory, I will analyze recent Virtual Reality (VR) experiences as new forms of illness narratives. Artworks like Ben Anderson’s “Turbulence: Jamais Vu,” Camille Baker’s “Mammary Mountain,” and Anagram’s “Impulse” utilize the bodies of their participants to tell different stories of debility: a vestibular migraine attack, the diagnosis and treatment of breast cancer, the navigation of tasks from the perspective of neurodivergence. Using the concepts of disorientation (S. Ahmed), bioprecarity (M. Schildrick), and indeterminacy, I will discuss how these artworks offer new forms of illness narrative in which participants are neither invited to empathize with an other, nor to assume the role of an uninvolved observer. Instead, I argue, these artworks highlight a different capacity of VR in telling stories of illness and debility—not by allowing us to step into an avatar that undergoes somebody else’s suffering, but by way of alienating the participant’s own body. I will argue that therein lies a potential of storytelling in VR to problematize binaries between abled versus disabled, healthy versus ill, and thereby offer a much-needed differentiation of illness and debility at a time of a mounting health crisis.
Keywords: Virtual Reality, Illness Narrative, Critical Phenomenology, Indeterminacy, Bioprecarity

Sarah Pollman (Communication Studies, Concordia University, Canada)

The Embodied Asylum: Contemporary Art in Former Psychiatric Hospitals

The Embodied Asylum: contemporary art in former psychiatric hospitals traces the lives of photographic images and other ephemera that tell stories of former patients who resided in now- shuttered psychiatric hospitals in Massachusetts. Photography’s role in psychiatry is well- documented by authors including Sander Gilman and Georges Didi-Huberman, among others. Yet in these studies of the visual culture of mental health, little attention has been paid to whom and what is not pictured in the archives and the role of institutions in the creation of illness narratives. My paper traces the work of contemporary artists and cultural workers who have remediated former asylum spaces to offer affective experiences that work to recuperate these lost narratives. Among these projects have been the installation of 28,000 live plants in the former Massachusetts Mental Health Center by artist Anna Schuleit Haber, a full length play by Hortense Gerardo performed by community actors on the grounds of Medfield State Hospital and photographic sculptures by Jodie Mim Goodnough that reimagine patient views from the Metropolitan State Hospital grounds. Through a close reading of these three artists’s work, I discuss how installation art offers embodied knowledge to visiting publics about these invisible historical experiences and works to rescripts illness from anomalous to the spectrum of lived human experience.
Keywords: embodiment, performance, asylum, archive, contemporary art