‘The rate of disability among Indigenous Australians is almost twice as high as that among non-Indigenous people'1
Merging Indigenous and disability research methodologies is how Dr John Gilroy from the University of Sydney and a team at James Cook University are finding the best tools and practices for Aboriginal and Torres Strait Islander peoples following a traumatic brain injury.
Dr Gilroy became an advocate for disability rights as well as Aboriginal rights from his own experience growing up as a Koori man from the Yuin nation with a significant speech impediment linked to a chronic respiratory condition.
‘I know what it is like growing up having to go to allied health services, such as speech therapy and counselling for bullying,’ Dr Gilroy said.
Overcoming his stutter Dr Gilroy decided to become a case worker during his undergraduate studies and ended up working for a disability agency peak body, National Disability Services, where he created a large-scale community development program to build relationships between disability service providers and Aboriginal communities at a local level.
‘So I have been a client and a worker. It was my work at National Disability Services that exposed me to the need for Aboriginal people to be involved and driving the research—leading me into a PhD,’ he said.
‘The main reason I did my PhD was to be able to blend the blackfella way with the whitefella way.’
Throughout his research journey Dr Gilroy realised that disability studies or Aboriginal studies alone couldn’t provide appropriate methodology for his Indigenous disability research approaches.
‘I had to create my own research methodology. I ended up blending the Indigenous standpoint theory from Aboriginal health research together with methodologies that capture the international classification of functioning in order to create my own Indigenous disability standpoint theory.’
‘Blending of Indigenous ways of knowing, being and doing, together with disability ways of knowing, being and doing provides a solid research structure as well as being appropriate to Aboriginal and Torres Strait Islander people.’
Embedded in this research, Dr Gilroy and the team are testing the cultural legitimacy of tools for measuring the impact of traumatic brain injury and what support is needed when going back to the community.
‘In this NHMRC funded project [led by Dr Bohanna] we are working with Indigenous organisations in small communities covering the top end of Queensland and Northern Territory,’ Dr Gilroy said.
‘This kind of research will help the government and rehabilitation services in how to support Aboriginal and Torres Strait Islander people with traumatic brain injury to lead a good life. It also helps to create culturally validated tools for screening a person’s support needs after sustaining a traumatic brain injury.
‘That kind of data helps us work with hospitals and local community health centres and allied health services on more culturally responsive ways on how to support people who have acquired a brain injury.’
NHMRC project grant’s help to create new knowledge by funding the best investigator-initiated research project plans between one and five years in any area relevant to human health.
‘NHMRC has enabled us to embed Indigenous methodologies into our research, and provided an opportunity to work with amazing scholars and to recruit research assistants who share the same values,’ Dr Gilroy said.
‘It provides the means to work on a project this complicated through the sunny and the stormy days—with Aboriginal people working with us and walking with us through every step of the way.’
So far, research findings are indicating that immediate support for Aboriginal and Torres Strait Islander people when they enter into hospital is needed, not just when they leave hospital.
‘One of the areas we need to work on is the prevalence of people discharging against medical advice. We are talking about people who have a serious injury going home without any support,’ Dr Gilroy explained.
‘We need to improve awareness of Indigenous research methodologies in disability research, we need to educate both Indigenous and non-Indigenous scholars, we have to build cultural competence and cultural confidence into the academic world, and to work with Aboriginal and Torres Strait Islander peoples in an inclusive way.
‘We also need to target governments through the National Disability Insurance Scheme on how to better support Aboriginal and Torres Strait Islander peoples with traumatic brain injury in a culturally appropriate manner that enables people to live a life they desire within their communities, cultures, and families.
‘I wanted to come up with a way to give Aboriginal and Torres Strait Islander people with traumatic brain injury and their families a voice in disability policy.’
1Council of Australian Governments (2011) National disability strategy 2010-2020, Australian Disability Enterprise.