Speak Out OCTOBER 2019 V3 DIGITAL EDITION

Collaborative design and development of aided Augmentative and Alternative Communication (AAC) system prototypes for Yol ŋ u living with Machado-Joseph Disease Machado-Joseph Disease (MJD) is an autosomal dominant neurodegenerative condition resulting in ataxia. Children commonly inherit the same or a longer disordered gene sequence than their parents. Generally, the longer the disordered gene sequence, the earlier and more severe the onset. Approximately 650 Aboriginal people live with or are ‘at risk’ of MJD in the Northern Territory, a prevalence thought to be highest in the world. There is also an increasing number of Aboriginal people living with MJD in Far North Queensland. People living with MJD experience progressive dysarthria, but cognition is not affected. The PhD research, in partnership with the MJD Foundation, their Aboriginal staff, clients and families aims to understand the communication needs of Yol ŋ u living with MJD. Yol ŋ u are the Aboriginal people of northeast Arnhem Land, one of the most linguistically diverse regions in the world. Many Yol ŋ u speak and understand four or five Aboriginal languages or dialects. English here has little relevance in day-to-day interactions, unless interacting with Balanda (non-Aboriginal people). Some Yol ŋ u with strong English have previously trialled the use of low and high- tech aided Augmentative and Alternative Communication (AAC) systems, including PODD books, Proloquo2Go and Proloquo4Text with mixed results. While some Aboriginal people living with MJD know and use Aboriginal sign languages, no aided AAC systems are available in Aboriginal languages. There is a clear opportunity to work with individuals and families in early stages of MJD to develop AAC systems in Yol ŋ u languages, for use when speech becomes unintelligible. A partnership was developed between Charles Darwin University, the MJD Foundation and Yol ŋ u co-researchers. Through this partnership, the project was supported by senior Yol ŋ u researchers and advisors from Charles Darwin University as well as Yalu Mar ŋ githinyaraw. Yalu is a Yol ŋ u-run organisation using traditional clan structures of governance and management, following local customs and protocols for beginning research projects. The research team also consulted with Yol ŋ u clan leaders with appropriate kin relations to the researchers and participants involved in the research. The participatory action research involved high levels of collaboration with Yol ŋ u co-researchers, implementing culturally-responsive research with Yol ŋ u, informed by Indigenist research methodology. The project aimed to build shared understandings and explore AAC design and development in Yol ŋ u languages, in collaboration with Yol ŋ u co-researchers and families. This resulted in the exploration and development of an initial Yol ŋ u core vocabulary, development of trial prototype AAC systems and activities to explore concepts and considerations related to AAC design, literacy, Yol ŋ u language, culture and worldview. So far four low-tech Yol ŋ u AAC system prototypes were developed, and these are available to Yol ŋ u families through the MJD Foundation. The AAC systems include a Yol ŋ u alphabet board, core vocabulary board, and comprehensive word and symbol-based systems with core and fringe vocabulary. Together the systems incorporate almost 400 Yol ŋ u words, grammatical morphemes and symbols, some English words, as well as the Yol ŋ u and English alphabets. Through this research there have also been many significant linguistic and cultural considerations identified for future Yol ŋ u AAC system development. The team has learned much about participants’ confidence and experience in Yol ŋ u and English literacy, symbol use and selection, and other aspects of AAC system layout, design, access and navigation. The team looks forward to presenting some of our findings at the SPA Conference 2020 and are in the process of preparing the research findings for publication.

WINNER

Rebecca Amery (right) with some of the researchers.

Research participants living with MJD with Rebecca Amery.

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October 2019 www.speechpathologyaustralia.org.au

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