Representing illness

My presentation addresses visual and narrative representations of illness exemplified through a co-creative graphic novel production. Illness is a classic theme in theatre, literature, film, video. New types of autobiographical and biographical graphic novels are emerging, aka graphic pathographies, graphic medicine (see Czerwiec et al., 2015). An example of an autobiographical graphic medicine novel is My Degeneration: A Journey Through Parkinson’s (Dunlap-Shohl, 2015). Graphic medicine involves new artistic practices and combines aspects of writing as inquiry, narrative medicine, arts-based and artistic research, medical humanities, and health communication. A hybrid visual artist-author practice is usually involved in the graphic novel production; scriptwriting (storytelling, writing dialogue) and drawing (working out graphic style), as well as integrating reflexive practice with autobiographical layers (Baetens & Frey, 2017). My aim is to contribute to knowledge about artistic research and representations of illness. From a Bakhtinian dialogic standpoint, language (including drawing and writing) are never viewed as a unitary or finite system, but always ongoing and unfinished in a dialogic process (Frank, 2005; Frølunde, 2013). Artistic expressions about illness by those who experience illness, their families and caregivers may offer more diverse expressions (Czerwiec, 2015; McNiff, 1992; Mikkonen, 2008; Williams, 2015). In the presentation, I reflect on intertwined practices of co-creating a 7-page short graphic medicine novel entitled How to Understand? based on my husband’s experiences of dealing with PD. The ideas for representing illness stem from ongoing dialogues with my husband about his illness, discussions with my step-daughter, as well as feedback from other artists-authors-editors and readers. The practices were framed by my participation in a master class at the Comic Arts School (2018), led by Danish artist Halfdan Pisket, and a subsequent anthology. How to Understand? focuses on the relationship between two characters, a father with PD and a grown daughter. She is portrayed as the artist who is seeking his accept and ideas about what PD feels like in order to draw her graphic novel. (The daughter character is a composite of my step-daughter and me.) The daughter and father are shown at home chatting, drinking tea, while looking at her drawings about PD. She questions him in a rather naïve but well-meaning way. My intention is that the characters’ comments on her drawings adds comic relief. The discussion concerns how artistic, ethical representations of illnesses in the form of graphic novels may expand on how an illness like PD is represented. My modest artistic research with graphic medicine exemplifies how an autoetnographic and autofictional account of PD challenges illness tropes and ethics. Many images in our visually saturated world show illness in medical terms, such as depicting PD with brain scans or a hunched over elderly person as stereotypical sick body. Visually-rich personal illness narratives may influence the way in which an illness is viewed by the patient and by others. Ian Williams highlights the need for a variety of images to address taboos, and reach out to a wider audience, for instance, about illness and aging (Williams, 2012).