Ŋayaŋu ḏälthirri: ‘Being courageous’ in the face of changing communication associated with Machado Joseph Disease

Ms Rebecca Amery1, Ms Julie Wunungmurra2, Ms  Joanne  Gondarra2, Ms  Farrah Gumbula2, Ms  Rachel Baker2, Mr  Elah  Yunupingu2, Dr Anne Lowell1, Dr Pammi  Raghavendra3, Dr  Ruth Barker4, Ms Libby Massey2, Ms Ali  Grootendorst2, Prof Deb Theodoros5

1Charles Darwin University, Casuarina , Australia, 2MJD Foundation, Coconut Grove, Australia, 3Flinders University , Adelaide, Australia, 4James Cook University, Cairns, Australia, 5University of Queensland , Brisbane, Australia

Abstract:

Aims:The aim of this research is to better understand the communication needs and experiences of Yolŋu with Machado Joseph Disease (MJD), a rare genetic neurodegenerative disease. Yolŋu experiencing dysarthria associated with MJD may benefit from Augmentative and Alternative Communication (AAC). This research aims to explore participants’ communication goals, preferences and interest in communication therapy options.

Methods:10 Yolŋu with a diagnosis of MJD and 4 of their communication partners participated in in-depth, small group interviews and mapped their current communication partners. ‘Social Networks: A Communication Inventory for Individuals with Complex Communication Needs and their Communication Partners’ was used as a framework to gather this data. Interviews explored their everyday communication contexts and current use of AAC and technology.

Results:Most Yolŋu participants have emerging complex communication needs resulting from MJD which are further impacted by their changing linguistic and cultural contexts. Yolŋu communication in daily activities is inseperable from Yolŋu rom i.e. Yolŋu law, culture and ways of life. Yolŋu participants are interested in working with Balanda (non-Aboriginal people) to prepare for the future, including learning about AAC in ways that are responsive to Yolŋu preferences. This includes a focus on Yolŋu languages, culture and learning within family kinship structures.

Recommendations: Speech Pathologists have a role and responsibility to collaborate with Yolŋu families with MJD to develop AAC strategies and work in ways that respond to their unique and changing communication needs and priorities, now, and for future generations at risk of the disease.


Biography:

Rebecca Amery is a speech pathologist and PhD student at Charles Darwin University, Darwin, Australia. Rebecca grew up in Yirrkala in northeast Arnhem Land, Northern Territory and has worked and volunteered as a speech pathologist in Darwin, Melbourne, Vietnam and Indonesia with children and adolescents with complex communication needs over the last 6 years. Rebecca is concurrently enrolled in the Graduate Certificate of Yolŋu Studies.

Julie Wunungmurra is the lead Yolŋu co-researcher for this project. She has worked for the MJD Foundation as an Aboriginal Health Community Worker for 4 years. Julie is the primary contact and support person for Yolŋu with MJD and their families in Darwin, Galiwin’ku and Yirrkala. Julie provides support to MJD Foundation community services, research and education programs and projects, providing cultural advice and support to families, as well as translation and interpreter support with research, medical and genetic concepts.

Joanne Goṉḏarra is one of the Yolŋu co-reserachers for this project. She has experience as a co-researcher and research assistant working on health research projects at Menzies School of Health Research and Charles Darwin University. She provides linguistic and cultural expertise as an interpreter, linguistic and cultural advisor to the research project and to families affected by MJD in Galiwin’ku.

Farrah Gumbula is one of the Yolŋu co-researchers for this project. She has Diploma of Interpreting (Yolŋu) and has extensive work experience in intercultural teams of Yolŋu and Balanda, including working for Prime Minister and Cabinet, Arnhemland Progress Aboriginal Corporation, Traditional Credit Union, Centrlink, Airnorth and Milingimbi playgroup. She provides linguistic and cultural expertise as an interpreter, linguistic and cultural advisor to the research project and to families affected by MJD in Galiwin’ku.