Listening to the voice of living life with aphasia: Anne's story

Abstract

Background: Listening to how people talk about the consequences of acquired aphasia helps one gain insight into how people construe disability and communication disability in particular. It has been found that some of these construals can be more of a disabling barrier in re‐engaging with life than the communication impairment itself.

Aims: To explore and identify the role that narratives of disability (i.e. the ‘inner stories we live by’) play in how Anne, a woman with aphasia, and those close to her, make sense of stroke and aphasia.

Methods & Procedures: Qualitative analyses of in‐depth interviews, of notes from participant observation, and of artefactual material were used to get access to these insider perspectives of both Anne and some of her conversation partners.

Outcomes & Results: The data revealed that Anne created, was surrounded by, and immersed in an intricate and elusive tapestry of narratives of disability that contributed to her experience of living life with aphasia. Narratives of ‘limited competence’ and ‘disability as less than whole’ emerged as strong voices that stemmed from cultural and societal views about disability. In response to this Anne and other participants sought refuge in the ‘grand’ narrative of Modern Medicine with its focus on restitution, in order to make sense of their situation and to chart a way forward. As a result her life revolved around activities that would ‘make her better’.

Conclusions: Prevailing cultural narratives of disability played a key role in how Anne and those close to her made sense of aphasia and so shaped how she lived her life. The implications of this for working practice are discussed.

• aphasia
• disability
• narrative
• qualitative research methods

Notes

1. The term ‘disabled people’ is used throughout rather than ‘people with a disability’ to reflect the contention that disability is central to identity and that people with impairments are primarily disabled by society not by their bodies. However, there continues to be much debate around this issue (Shakespeare 2006).

2. All names used are pseudonyms.