Finding your voice and coping with a distressing diagnosis

Abstract

Adults diagnosed with neurological conditions can face a time-limited future with few treatment options. Their experience of receiving a diagnosis is distressing, even when ‘given well’. Distress is exacerbated by waiting times, notions of illegitimacy, progressive and frightening symptoms. This paper draws on a number of studies, using phenomenological qualitative interviews of over 65 families across Scotland (around 15% of families who live with MND in Scotland) between 2011-18. The research draws on the social model of disability, to determine where barriers to being and doing are constructed for participants, and what can be done to remove them. It will reflect particularly on the added value to adults who face dysarthria: voice degradation through impairment (for example through Motor Neurone Disease (Also known as ALS/MND)), of using a voice recording of their own voice, to generate speech. Many rely on augmentative and alternative communication (AAC) to express themselves. However the use of voice output communication aids (VOCAs) while facilitating communication, cannot currently preserve the identity of the individual, as users are restricted to a limited set of impersonal synthetic voices. The Speak Unique project (Led by Dr Rewaj, Euan MacDonald Centre) has explored the value of producing a synthesized voice, built around a person’s own voice, (after recording of a finite number of sentences chosen for their ability to be deconstructed phonetically, for those phonetic building blocks to be reconstructed to produce infinite sentences). This paper draws on an evaluation of this work, amongst other studies into the lived experience of neurological conditions. A diagnosis of a neurological condition is sufficient to trigger a biographical disruption (Bury, 1982) but there are services that enable feelings of control and hope. The impact of recovering ‘their own’ voice was significant for families, impacting positively on well-being, social identity and intimacy. Keywords—ALS/MND, Disability, Impairment, Voice