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The meaning of voice in the lives of young people who speak through SGDs

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What is it really like to speak with/through a speech generating device (SGD)? What is the meaning of voice in the life of a young person who speaks using a SGD? This paper explores these questions by providing a glimpse into the lived experience of people who, due to a severe physical disability, use voice output communication devices to speak. Using phenomenological methods (van Manen, 2014), the lived experience of young people who, due to cerebral palsy are unable to communicate through natural speech, were gathered through interview, email and observation. In addition, accounts of speech generating device users were gathered from blogs, published personal accounts and the media representation of people who use devices to speak. This research seeks to illuminate the unique experience of speech, voice and communication that shape the lifeworld of those who speak with/through a machine. Descriptive accounts of users experiences will be shared and reflected upon to illustrate the emerging themes including: finding my voice, the reach of my voice, my voice is not my own, what my voice reveals, and dys-appearance (a term borrowed from the writings of Leder, 1990). Implications of emergent understandings for practice in the field of speech language pathology, education and rehabilitation engineering will be explored.


Kathy Howery    
University of Alberta


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