School of Psychology and Speech Pathology Talking about health, wellbeing and disability in young people: an Aboriginal perspective Caris Lae Jalla This thesis is presented for the Degree of Master of Philosophy of Curtin University February 2016 DECLARATION To the best of my knowledge and belief this thesis contains no material previously published by any other person except where due acknowledgment has been made. This thesis contains no material which has been accepted for the award of any other degree or diploma in any university. Signature: Caris Jalla Date: ii ABSTRACT In many Indigenous languages globally, there is often no directly translatable word for disability. For Australian Aboriginal and Torres Strait Islanders, the prevalence of disability is greater compared to non-Indigenous populations. Despite the gap in rates, access to disability supports and services are lower and disproportional. One factor impacting low service access may be the differing views of disability between Aboriginal and Torres Strait cultures and mainstream Western perspectives. The objectives of this research were to investigate the meaning of health, wellbeing and disability from the viewpoint of Aboriginal and Torres Strait Islander youths and to describe the facilitators and barriers to health and wellbeing for people with disabilities. These investigations also identified Aboriginal and Torres Strait Islander children and young people’s perceptions on the causes of disability and explored concepts associated with living with disability. Aboriginal and Torres Strait Islander youths, both with and without disabilities, residing in Perth, Western Australia (WA) and aged nine to 26 years were invited to participate in qualitative research. Yarning circles were conducted in various home and community settings around the metropolitan area. The research incorporated the voices of Aboriginal and Torres Strait Islander children and young people with and without a diagnosed disability. Results depict the holistic understanding of wellbeing, with health identified in terms of coexisting components – the physical, mental and spiritual/cultural self. Enablers and inhibitors to health and wellbeing for people with disabilities were discussed, with these facilitators and barriers later categorised as social and cultural, physical and medical, or material and environmental. The three categories provide a framework for the facilitators and barriers to health for Aboriginal and Torres Strait Islander people with disabilities. Participants also identified several beliefs on the causes of disabilities. Further discussions on disability explored varying emotions linked to living with disability. The results give a unique perspective on health, wellbeing and disability from Aboriginal and Torres Strait Islander youths. iii This research provides new insights for health professionals working with Aboriginal and Torres Strait Islander families caring for children with disabilities. The results identified can be used in recommendations for better service delivery in the health and disability sectors. Findings can be applied by service providers and policy makers to create a shift towards a more holistic approach to health and disability. iv AWARDS, PUBLICATIONS AND PRESENTATIONS Hayden, G. and Jalla, C. (2015). ‘Communicating for quality and safety in Aboriginal health care’, in R. Iedema, D. Piper and M. Manidis (eds) Communicating Quality and Safety in Health Care, pp. 230-44. Melbourne: Cambridge University Press. Jalla, C. and Hayden, G. (2014). ‘Aboriginal health research is not black and white – lessons from the field’, Australian Indigenous HealthBulletin 14(3), 1-4. ‘Yarning about Disability’, National Student Award, Endowment Challenge Fund, Endeavour Foundation (May 2015). ‘Talking about health, wellbeing and disability in young people: an Aboriginal perspective’, Aboriginal and Maternal Child Health Conference, Perth (May 2015). ‘Disability as a Social Construction: Exploring Australian Aboriginal and Torres Strait Islander perspectives’, International Disability Conference, Kuching, Malaysia (November 2014). ‘Disability as a Social Construction: Exploring Australian Aboriginal and Torres Strait Islander perspectives’, Building Mental Wealth Through Innovation Conference, Curtin University, Perth (December 2013). ‘Talking about health, wellbeing and disability in young people: an Aboriginal perspective’, Dennis Glencross Seminar, Curtin University, Perth (July 2012). v TABLE OF CONTENTS DECLARATION .............................................................................................. ii ABSTRACT .................................................................................................... iii AWARDS, PUBLICATIONS AND PRESENTATIONS .................................... v LIST OF ABBREVIATIONS ............................................................................ x 1 CHAPTER 1 – Introduction ................................................................... 17 1.1 Background ....................................................................................... 17 1.2 Objectives of the Study...................................................................... 19 1.3 Significance of the Study ................................................................... 20 1.4 Summary ........................................................................................... 21 2 Chapter 2 – Literature Review .............................................................. 22 2.1 Introduction ........................................................................................ 22 2.2 Indigenous People ............................................................................. 23 2.3 Indigenous Populations and Health Outcomes .................................. 24 2.4 Disability in Australia ......................................................................... 27 2.5 Australian Children and Young People .............................................. 32 2.6 Australian Aboriginal Constructs of Disability .................................... 35 2.7 Barriers to Service Access in Australia .............................................. 40 2.8 Indigenous Perceptions of Health, Wellbeing and Disability .............. 48 2.9 Summary ........................................................................................... 51 3 Chapter 3 – Method .............................................................................. 53 3.1 Introduction ........................................................................................ 53 3.2 Aboriginal Reference Group .............................................................. 54 3.3 Ethics................................................................................................. 56 3.3.1 Reciprocity ............................................................................... 57 3.3.2 Respect .................................................................................... 58 3.3.3 Equality .................................................................................... 59 3.3.4 Responsibility ........................................................................... 60 3.3.5 Survival and Protection ............................................................ 60 3.3.6 Spirit & Integrity ........................................................................ 61 3.3.7 Counselling Support & Reducing Risks .................................... 62 3.4 Yarning Circles .................................................................................. 64 vi 3.5 Pilot Yarning ...................................................................................... 66 3.6 Visual Supports and Aids .................................................................. 68 3.7 Procedure .......................................................................................... 71 3.8 Recruitment and Participants ............................................................ 76 3.9 Thematic Analysis ............................................................................. 78 3.10 Data Analysis .................................................................................... 79 3.11 Summary ........................................................................................... 82 4 Chapter 4 – Findings ............................................................................ 84 4.1 Introduction ........................................................................................ 84 4.2 SECTION A – Aboriginal Health and Wellbeing ................................ 84 4.2.1 Theme A1: Strong Body ........................................................... 84 4.2.2 Theme A2: Strong Mind ........................................................... 85 4.2.3 Theme A3: Strong Spirit or Culture .......................................... 88 4.2.4 Section A Summary .................................................................. 90 4.3 SECTION B – Facilitators and Barriers ............................................. 92 4.3.1 Theme B1: Social and Cultural Aspects ................................... 92 4.3.2 Theme B2: Physical and Medical Aspects ............................... 98 4.3.3 Theme B3: Material and Environmental Aspects ................... 103 4.3.4 Section B Summary ................................................................ 105 4.4 SECTION C – Causes of Disability ................................................. 108 4.4.1 Theme C1: Abuse .................................................................