Abstract
In our research with Yolŋu, First Nations Australians from northeast Arnhem Land,we explored ways for Yolŋu with complex communication needs to continue communicating
in Yolŋu languages, practicing, and passing on their culture, and working together with
speech language pathologists (SLPs) to design culturally responsive resources and services
Yolŋu culture is among the oldest of continuing cultures in the world. There are over
50 distinct Yolŋu clan languages spoken by an estimated 12,000 Yolŋu. Most Yolŋu are
multilingual, speaking several of these languages. Yolŋu clan languages continue to be
spoken by all generations, passed down orally, and acquired by children as a first language.
Many Yolŋu continue to live in very remote communities where English has little relevance
unless engaging with service providers who do not share their language or cultural
background.
For at least three generations a small but growing number of Yolŋu have lived with
Machado-Joseph disease (MJD) – a rare, autosomal dominant, neurodegenerative disease of
adult onset, characterized by progressive cerebellar ataxia. Progressive ataxic dysarthria is
one of the earliest presenting symptoms of the disease, causing speech and voice impairment
that becomes more severe until useful speech is no longer possible. Dysarthria has a
devastating impact on communicative participation, an impact which is magnified because of
the oral, performed nature of Yolŋu languages, and the critical importance of language to
culture, identity, and wellbeing for First Nations peoples.
Our collaborative and culturally responsive research was initiated and led by Yolŋu
families living with MJD, and supported by a team of Yolŋu researchers. Together we aimed
to better understand the communication strengths and needs of Yolŋu living with the disease,
and to develop culturally responsive processes and resources to support the interpersonal
communication interactions of Yolŋu in later stages of the disease.
In phase one, we built relationships as an intercultural research team, with 10 Yolŋu
living with MJD and five of their close family communication partners. Through small group
conversations, we explored Yolŋu communication strengths and needs, and their interest in
SLP, including aided augmentative and alternative communication (AAC) to support
communicative participation through the course of the disease. Despite limited experience
with SLP, Yolŋu living with MJD expressed interest in working together through culturally
responsive processes to develop and use aided AAC systems in their own languages. Yolŋu
researchers developed a Yolŋu metaphor, Goŋdhu (“Building understanding by hand”), to
represent core understandings required for SLPs to work effectively with Yolŋu to support
communicative participation.
In phase two, we conducted a scoping review of existing literature that reported on the
development of components or whole AAC systems in languages other the English. We
identified characteristics of existing studies, and the linguistic and cultural factors that
influenced research methods and AAC system development. Most studies utilised qualitative
research methods. Linguistic factors impacting AAC development were consistently and
extensively reported, but cultural factors were rarely explicitly acknowledged in the
literature.
In phase three and four of our research, we developed Yolŋu AAC system prototypes
using a qualitative dominant, mixed method, participatory action research process with the
same participants. We first explored the concept of core vocabulary and developed an initial
Yolŋu core vocabulary word list for use in AAC (phase three). We then developed four
comprehensive Yolŋu AAC system prototypes (phase four). These systems included the
Yolŋu core vocabulary word list and existing symbols that were modified to be more
culturally responsive. A number of significant linguistic and cultural considerations were
identified as impacting whole of Yolŋu AAC system design, including vocabulary
representation, system layout, and access. Yolŋu researchers developed a second Yolŋu
metaphor, Gulaka-buma (harvesting yams), to share the AAC system development process
with Yolŋu living with MJD, SLPs and other non-Yolŋu audiences from a Yolŋu worldview.
Key outcomes that have arisen from this research include tangible Yolŋu AAC system
prototypes and AAC system components for Yolŋu living with complex communication
needs. Methodological contributions include a novel, culturally responsive approach to AAC
system development that drew on existing evidence-based practice in AAC, and strengths of
Yolŋu languages and culture. Yolŋu metaphors developed by Yolŋu researchers present new
theoretical understandings to guide AAC system design and service delivery with non-Yolŋu
SLPs. These contributions, published in academic journals, have extended knowledge
amongst Yolŋu living with MJD, SLPs working with First Nations peoples, other culturally
and linguistically diverse communities in Australia, and AAC practitioners in other countries
who work in intercultural contexts. Our research marks the beginning of long term, ongoing
intercultural collaborative relationships and learning between Yolŋu living with MJD and
SLPs.
| Date of Award | 2023 |
|---|---|
| Original language | English |
| Supervisor | Anne Lowell (Supervisor), Raghavendra Pammi (Supervisor) & Ruth Barker (Supervisor) |