Illness Narrative as Life-Writing
Principal investigators: Brian Hurwitz and Neil Vickers
Wellcome Research Fellow: Jamie Whitehead
Wellcome PhD Student: Nicola von Bodman-Hensler
Background
Over the last two decades there has been an explosion of interest in the literary possibilities of illness. According to Ann Hunsaker Hawkins (1993), illness narratives began to form a distinct publishing phenomenon in or about 1950.6 Extremely rare before 1900, over the last twenty years they have become almost commonplace. Previously recognisable as the sub-genre of the self-help book and the preserve of patients, they have since been joined by a series of works written in the late 1980s by accomplished authors, recounting experiences of illness as patients and as carers. John Updike's account of living with psoriasis, Self-Consciousness (1989), William Styron's Darkness Visible (1990), a memoir of the author's struggles with depression, are notable examples. With the publication in 1993 of John Bayley's Iris: A Memoir of Iris Murdoch (1993) illness narratives began to reach a much larger public, an effect significantly amplified by the Hollywood film, Iris (2001) Over the same period, patient groups have used the internet to develop illness narratives and illness has become an integral part of the life imagined and lived out on Second Life (see www.secondlife.org).
Research Programme
Illness narrative has become a cultural phenomenon of real importance. How far it may serve to give a picture of illness "from the inside" is a question of the first magnitude. The most influential theorist of the sub-genre is Arthur Frank, who holds that while good illness narratives don't necessarily enable the sick to cope better with their illness, they can offer a reliable picture of what goes into coping. Like almost all other theorists of illness narrative, Frank insists on the radical alterity of sickness. Wiltshire makes the point that writers of illness narratives differ from other life-writers in one crucial respect: almost all of them would never have chosen to write a work of that kind; circumstances have forced it upon them.
There are specific questions in life writing that illness seems to throw into especially sharp relief. Chief among these is the question of authenticity. Early theorists of illness narrative such as John Wiltshire and Arthur Frank took honesty and authenticity to be the most important qualities that the genre could exhibit. More recently, it has been argued in terms derived from Goffman that illness narratives should be thought of as performances through which the ill person comes into existence and assumes a transformed identity. By carrying out this performance he or she can then claim a place within a separate "honour system" peculiar to the sickness group.
Aims
1. To consider the contribution of illness narrative to the representation of illness from 1950 to the present day.
2. To consider the increasingly complex and rich contribution that illness narratives make to the public understanding of the interiority of illness experience.
3. To consider illness narrative in relation to other forms of popular writing such as biography and popular science books.