Abstract
In an age where rates of burnout and compassion fatigue are soaring, interrupting the throughline of care, both patients and caregivers alike are falling through the cracks. These bodies and persons, each of them both giving and receiving care, point to the critical need to understand the human cost and human triumph of healthcare. Each chapter herein engages with the embodied experiences of caregivers, informal and formal, demonstrating the weight of their work and how they are othered from those they care for, the community that surrounds them, and themselves. Departing from conventional methods of querying caregiving, this project bridges health and humanities, medicine and literature, in an effort to reframe care – who, with what body, voice, and illness experience, has access to that care. In probing several experiences of caregivers, I investigate the gaps in caregiving, thus calling for more attentive and holistic care for those bodies and persons that have fallen outside of the purview of routine Western medicine. The pain they endure, the disease or disability with which they are diagnosed, and the care that they give and receive, are located beyond the normative medicalized optic, in other words, the normative way that medicine sees and categorizes people and bodies. In engaging with a variety of texts, novels such as Marilynne Robinson’s Home, Anne Enright’s The Green Road, Tommy Orange’s There There, and Karen Tei Yamashita’s Tropic of Orange, alongside Stephen Frears’s film Dirty Pretty Things and Porochista Khakpour’s memoir Sick, I argue that the unsharability of pain, the gap between patient and provider, afflicted and othered, is greatly diminished by literature, no matter how queer or alt-normative their experience. My analysis thus attends to such experiences, as they are a stand-in and a voice for those real-world bodies and people like them.