Performing Narrative Medicine: Understanding Familial Chronic Illness through Performance

This study presents the process of creating a performance ethnography of my family’s narratives about familial chronic illness and disability. I label this process performing narrative medicine. By documenting and granularly analyzing the process of my performance ethnography, the following chapters provide a step-by-step discussion of how families communicate about chronic illness/disability through storytelling and humor, and how/what performance does as a method, metaphor and object of study to further our current communicative practices and understandings of chronic illness and disability in families. I argue that performing narrative medicine is a heuristic for families living with chronic illness and disability, and a method that may be used and applied outside the context of my own family. The chapters in my dissertation directly address the following questions: How does my performance work as embodied knowledge to gain greater understanding of the lived experience of familial disability/chronic illness? How does the use of humor as a communicative construct, and performance ethnography work as a practice of “performing narrative medicine?” What are our scholarly stakes in performing narrative? How too might binding narrative medicine to performance inform how we do qualitative research? How do the respective motions of narrative medicine and research practices/principles of performance ethnography converge and cross-fertilize each other? Does a work like narrative medicine endow storytelling and performance with a consequentiality? This performance ethnography of familial disability and chronic illness contributes to understandings of families dealing with chronic illness/disability, extends narrative medicine as a theoretical construct, and speaks to a long tradition of the practice of performance ethnography. Overall, performing narrative medicine reveals the underlying communication competencies at work in families living with chronic illness and disability. Through the use of humor and performance as a communication practice, I reveal the power of empathy. The power in realizing our own human capacities to relate to one another across differences, and continue the work of “living well.” This dissertation emphasizes the power of performance to constitute alternative ways of performing and understanding familial chronic illness, by emphasizing the work of creating, implementing and studying performance