'Pick me up and not a down down, up up': How are the identities of people with aphasia represented in aphasia, stroke and disability websites?

Abstract

Suddenly acquiring a permanent impairment means a person must learn to think differently (Frank, 1995), and he or she does so partly by telling stories. The most commonly told illness narratives are 'restitution' narratives. People with aphasia (a communication impairment commonly following stroke) surfed aphasia, stroke and disability websites, read the personal stories attached to them, and created their own narratives in response. Charitable and disability-related websites excluded people with aphasia through their tone, content and narrative 'voice.' Engagement with some websites was contingent on subscribing to a specific perspective on aphasia. Personal narratives attached to charitable websites were seen to reflect the organisational stance. In particular, idiosyncracies of aphasic language were often eliminated. When participants constructed their own web pages they replicated the stylistic traits that had previously been criticised. Identities are mercurial and difficult to pinpoint. Further work with people with aphasia using videoclips, soundclips and other non-text-based techniques to create illness narratives is planned.