Narratives of illness & disability

It has been acknowledged in social science that the narrative is one of the methods we use to construct and assign meaning to our social worlds (Hyden, 1997). The nature of storytelling offers a platform for an individual to express their subjective experience as well as allowing them to create self-representations as a way of dealing with loss, coping with pain and other identity shifts; externalising the issues rather than internalising them and risking neurosis. The onset of chronic illness or disability presents a disruption of an individual’s life course, and with it their identity, since the relationships between self, body and the external world are undergo a transformation. The construction of narratives thus enables people to reconstruct their life stories and give meaning to the disrupting events that have occurred (p 51). Due to major shifts in life conditions, long-term disability or illness fundamentally changes perspectives on life and prospects for the future. As such, narrative offers a way of reconciling the past with the present, contextualising the illness or impairment within the frame of one’s own life course, and re-establishing relations between the self, the body and the external world. Hyden observes that narratives perform a number of different functions, from reconstructing one’s life history, to comprehending the illness, as well as collectivising the experience (p 64).

In conclusion, Hyden writes that illness narratives express the experience of disease from within, and can shed light on how the perception of disease or disability is constructed by society and culture; as cathartic means of transforming and articulating physical suffering; and primarily as a means of reconstructing an individual’s sense of identity though life value and meaning (p 65).

It may be worth considering the autobiographical narrative as a response to what Davis (1995) calls the ‘inquisitive gaze’, the inherent requirement that impairments must be in some way ‘explained.’ On the other hand, Davis also points out the dangers of placing disability within a Bakhtinian ‘chronotope’, a time sequence, since “by narrativizing an impairment, one tends to sentimentalize it and link it to the bourgeois sensibility of individualism and the drama of an individual story” (ibid, p 4-5). As such the physical fact of impairment becomes an individual drama to be played out – a ‘hero’ or ‘victim’ or ‘love’ story. The personal narratives of disabled persons that I propose would avoid any such narrative tendencies, empowering them to challenge prevailing simplistic readings of disability.

The use of first person narrative is common in disability studies, from Paul Hunt’s (1967) early descriptions of his oppression and institutionalisation, Allan Sutherland’s (1981) and Jo Campling’s (1981) transcriptions of interviews to shed light on institutional discrimination and women’s experiences of disability respectively, Jenny Morris’s (1991) view of disability from a feminist perspective and Siebers’ poignant account of coming to terms with his ‘withered limb’ (1998) to name a few that I’ve come across. Verbalising one’s experiences and oppression may serve the multiple purposes of coming to terms with loss, reconstructing one’s life story and building strength through solidarity. While reclaiming and naming go some way to compensate for lack of agency, some of the subjective experiences involved, including pain and anger, may not be so easily framed in verbal narratives. The photographic ‘autopathographies’ of Jo Spence and Hannah Wilke offer an alternative to the verbal accounts, instead using visual imagery to explore the medicalisation and fragmentation of the body, as well as to reclaim the self from a premature social death.

Arthur Frank (1994) refers to first-person illness narratives as an ‘orphan genre’, since they are generally disregarded both as literature and as social scientific data. He notes three basic tensions within such narratives that make them unique. The first is the public telling of a private experience: he suggests that a voyeuristic preference for third person narratives of illness is more about readers’ expectations that the sick person will remain passive and not reveal too much than any sense of respecting privacy. The second tension is created between the voice of the author and that of the medical profession: a need to regain narrative control of one’s life in the face of medicalisation. The third tension is between the disease itself and the life that is still being lived, since the illness will alter the meaning of all experiences, both prior to and post diagnosis.

Frank (1994, 2013) speaks of three central narrative structures used: restitution, chaos and quest. Restitution is the account of recovery, returning to health, and is generally determined (and thus written) by medical professionals. Such narratives are used to market remedy products, and necessitate the restoration of health, “[o]therwise, what is there to tell..?” (1994, p6). Chaos can be brought about by misdiagnosis, but is also embodied in fundamental life changes that take place both physically and socially with the onset of illness or impairment (loss of employment, housing etc); Frank sees chaos as anti-narrative, since there is no sense of a viable future, and life is reduced to a series of present tense experiences (2013, p xv). Storytelling as quest is discovering ways of living with illness, adapting attitudes and behaviours rather than viewing the self as diminished, the self has undergone a transformation as a result of the experience of suffering (1994, p 8). As he sees it: “[t]he ill person who turns illness into story transforms fate into experience” (Frank 2013, p xix). In his view, illness narratives are principally quest stories that are intercut and interwoven with chaos and restitution voices, and they represent the voice of experience in opposition to the medical gaze: speaking out of, but not submerged in the illness (1994, p8).

For Frank, illness experience reverts the self back to infanthood, where the body is fragmented and the limits of language to express such feelings as pain are revealed. A restitution narrative, entrenched as it is in medical terminology, only serves to abstract the body more, while the images of health restored are supplied by the physician and mere projections. The illness narrative helps the individual to collect images and reorder them, thus reconstituting a holistic sense of self. The reward received at the end of quest narratives is not the restoration of health, but a renewed subjectivity and the realisation that “much of the previously ‘healthy’ identity was imaginary” (1994, p 12). This rests on the idea that what was first thought to be absent from the individual’s life (the plenitude of health) is revealed to be merely an illusion, and through recognition of this fact the individual is able to discover that illness bears its own advantages (p 13).

“The illness narrative addresses the desire to tell stories told many times before, precisely because they have already been experienced… Retelling and listening to these experiences, teller and listener begin to attend only to each other.” (1994, p 16)

As Frank (2002) writes, “when the body breaks down, so does life,” and although the medical profession can do a lot to restore the physical wellbeing of an individual, the psychological impact of the fear and frustration experienced are beyond the scope of its palliative powers (p 8). “Talk is not the only way to elevate illness beyond pain and loss, but for most people it may be the most reliable way” (Frank 2002, p5) Frank speaks of the distinction between disease talk (that of the medical profession, where the body is fragmented, measured and seen as a ‘site’ where the disease is ‘happening’) and illness talk (the experience of living with and through disease; the pain and fear of living inside a body that is breaking down) and recommends that medical professionals should learn to engage with patients using illness talk rather than forcing them to use disease talk (ibid, p 12-14).

Halberstam mentions the use of personal narrative as a way to subvert and explore alternatives to grand narratives and societal ‘norms’:

Conversation rather than mastery indeed seems to offer one very concrete way of being in relation to another form of being and knowing without seeking to measure that life modality by the standards that are external to it.” (2011, p 12)

As such personal narratives or analyses of disability experience would seem to offer the alternative that many disability scholars deem necessary in order to challenge the prevailing medical model and its related discourse of definitions and normalizing treatments.

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