Literature and Medicine II

31 Despite the proliferation of ill bodies in Western mass media, illness makes us uncomfortable. Illness and people who are ill are stigmatized and used to make the rest of society feel less tenuous about their own body stability. This stigma is perpetuated via mainstream media through the saturation of restitution narratives and the silencing of chaos and the idea that quest establishes a different way of being well. Goffman distinguishes between the normals and those who possess a stigma and argues that those who have stigmas such as physical deformities are discriminated against by the normals because “we believe the person with the stigma is not quite human” (73). Although Goffman recognises that an ideology is created in regard to stigma to explain inferiority and rationalise fears about the stigmatised group, he places the stigma within the body.

32 Definitions of illness operate on an ideological level through stigma, and the hegemony of ‘health’ is maintained as long as illness is individualised. Illness is not just there; it is constructed by the boundaries of normality. The most popular illness narratives project a cultural narrative of loss and cure seeking—our society encourages narratives that have happy endings. For Susan Sontag, this is because everyone holds membership within both the world of the sick and that of the well and we rely on the promise of medicine to cure all diseases (1). New identities, that acutely remind individuals of their difference, are resisted and stigmatised by wider society.

33 When I was invited to give a client’s perspective on experiencing neurological disability to a group of physiotherapists completing a Graduate Diploma in Neurological Rehabilitation at the University of Western Australia, I decided to share several of the journal entries discussed throughout this paper, while reflecting on the way society encourages certain types of stories while discouraging others in order to reinforce socially constructed power imbalances:

My brief was broad, I could discuss whatever I wanted to; however, as I was invited due to my personal experiences, success and knowledge, I felt some pressure to tell an ‘inspirational’ story. I decided instead to talk about how I have told my ‘illness narrative’ and how this can be used in stroke recovery, particularly in relation to negotiating a changing identity. What an interesting experience! I titled my piece “Testimony: Illness and narrative” and used excerpts from my journal to highlight the differing narrative structures a person adopts when writing through trauma. The students who were largely practicing physiotherapists had trouble relating to me as a person with knowledge and attempted to turn me into a patient again, offering me advice on my walking and pointing out the way my movement changed when I revisited particularly traumatic times in my illness and recovery. This was despite my telling them that I found it difficult to read some particularly chaotic and depressing journal entries. They wanted the power, but I refused to give it up. Their attempts to put me in that position of patient again made me realize the importance of telling my own story all over again. (Unpublished Journal 17 August 2006)

Retelling my illness narrative in this way from the perspective of someone who had recovered but remained marked by their illness was difficult for the students to comprehend, and they encouraged me to adopt the restitution narrative, to socially and medically shape my experience once again; to treat me as a body to be observed. My cultural and literary interpretations of my own experiences left them wanting as they continued to medicalise me and others like me.

Conclusion

34 Prominent sociologist C. Wright Mills maintains that admirable scholarly thinkers draw on their life in their intellectual work (195-96). I have attempted to do this throughout this paper in order to foreground the importance of narrative knowledge within both medical knowledge and critical disability activism.

35 Taking health for granted looms large in our culture, “one of our most tenacious cultural fantasies is a belief in body stability” (Garland-Thompson 114). When illness does occur we relentlessly strive for a happy ending, and the most popular narratives retell a story of loss and cure-seeking. Arguably, the act of writing this article could be seen as a (re)telling of my restitution narrative; however, the inclusion of chaos aspects disrupts the culturally shaped framework of illness and recovery.