Journal articles on the topic 'Aboriginal Australians Western Australia Perth Health'

Many policy interventions have attempted to address the entrenched disadvantage of Aboriginal Australians1; however, sustained improvement in social, cultural, physical, and emotional well-being is not evident. This disadvantage is compounded by paternalistic practices which do not promote Aboriginal self-determination or empowerment. This article presents the lived experience and voice of Aboriginal Australians spending time in parks in Perth, Western Australia. A community-based participatory action research approach informed by critical Indigenous methodologies involving collaboration between Aboriginal and non-Aboriginal service providers was used. Participants experienced disconnection from kin and country, serious risk to personal safety, homelessness, and problematic health; all related to, and intersecting with, time spent in the parks. The participants’ narratives highlight the enduring impacts of colonization, dispossession, and racism. These lived experiences are situated within contexts of rising moral panic from politicians, residents and mass media, and siloed policy and service delivery responses.

AbstractThere is a paucity of published information about conceptions of Aboriginal child rearing and development among urban dwelling Nyoongar/Aboriginal people in Australia. We detail the unique findings from an Aboriginal early child development research project with a specific focus on the Nyoongar/Aboriginal community of Perth, Western Australia. This research significantly expands the understanding of a shared system of beliefs and values among Nyoongar people that differ in important ways from those of the broader Australian (Western) society. Consistent with the findings of research with other Aboriginal groups in Australia, and internationally, our work challenges assumptions underpinning a range of early childhood development policies and highlights the implications of cultural biases and misunderstandings among non-Aboriginal professionals in child and family services, education and other settings.

Background:Aboriginal and Torres Strait Islander Australians experience stroke and traumatic brain injury (TBI) with much greater frequency than non-Aboriginal Australians. Acquired communication disorders (ACD) can result from these conditions and can significantly impact everyday life. Yet few Aboriginal people access rehabilitation services and little is known about Aboriginal peoples’ experiences of ACD. This paper describes the protocol surrounding a study that aims to explore the extent and impact of ACD in Western Australian Aboriginal populations following stroke or TBI and develop a culturally appropriate screening tool for ACD and accessible and culturally appropriate service delivery models.Method/Design:The 3-year, mixed methods study is being conducted in metropolitan Perth and five regional centres in Western Australia. Situated within an Aboriginal research framework, methods include an analysis of linked routine hospital admission data and retrospective file audits, development of a screening tool for ACD, interviews with people with ACD, their families, and health professionals, and drafting of alternative service delivery models.Discussion:This study will address the extent of ACD in Aboriginal populations and document challenges for Aboriginal people in accessing speech pathology services. Documenting the burden and impact of ACD within a culturally secure framework is a forerunner to developing better ways to address the problems faced by Aboriginal people with ACD and their families. This will in turn increase the likelihood that Aboriginal people with ACD will be diagnosed and referred to professional support to improve their communication, quality of life and functioning within the family and community context.

Despite dedicated government funding, Aboriginal Australians, including children, experience more dental disease than other Australians, despite it being seen as mostly preventable. The ongoing legacy of colonization and discrimination against Aboriginal Australians persists, even in health services. Current neoliberal discourse often holds individuals responsible for the state of their health, rather than the structural factors beyond individual control. While presenting a balanced view of Aboriginal health is important and attests to Indigenous peoples’ resilience when faced with persistent adversity, calling to account those structural factors affecting the ability of Aboriginal people to make favorable oral health choices is also important. A decolonizing approach informed by Indigenous methodologies and whiteness studies guides this article to explore the perceptions and experiences of Aboriginal parents ( N = 52) of young children, mainly mothers, in Perth, Western Australia, as they relate to the oral health. Two researchers, 1 Aboriginal and 1 non-Aboriginal, conducted 9 focus group discussions with 51 Aboriginal participants, as well as 1 interview with the remaining individual, and independently analyzed responses to identify themes underpinning barriers and enablers to oral health. These were compared, discussed, and revised under key themes and interpreted for meanings attributed to participants’ perspectives. Findings indicated that oral health is important yet often compromised by structural factors, including policy and organizational practices that adversely preclude participants from making optimal oral health choices: limited education about prevention, prohibitive cost of services, intensive marketing of sugary products, and discrimination from health providers resulting in reluctance to attend services. Current government intentions center on Aboriginal–non-Aboriginal partnerships, access to flexible services, and health care that is free of racism and proactively seeks and welcomes Aboriginal people. The challenge is whether these good intentions are matched by policies and practices that translate into sustained improvements to oral health for Aboriginal Australians. Knowledge Transfer Statement: Slow progress in reducing persistent oral health disparities between Aboriginal and non-Aboriginal Australians calls for a new approach to this seemingly intractable problem. Findings from our qualitative research identified that structural factors—such as cost of services, little or no education on preventing oral disease, and discrimination by health providers—compromised Aboriginal people’s optimum oral health choices and access to services. The results from this study can be used to recommend changes to policies and practices that promote rather than undermine Aboriginal health and well-being and involve Aboriginal people in decisions about their health care.

Elder- and community-led research processes are increasingly being acknowledged as critical for successful Aboriginal health and wellbeing research. This article provides an overview of the methodologies, methods and progress of the Ngulluk Koolunga Ngulluk Koort (Our Children, Our Heart) project—an Elder- and community-led research and research-translation project focused on the early childhood development of Australian Aboriginal children in an urban context (Perth, Western Australia). We describe the application of a participatory action research methodology that is grounded in Aboriginal worldview(s), from the collaborative development of the original idea to the post-funding processes of co-design and implementation, data collection, analysis, interpretation and translation.

It is likely that young people who are both Aboriginal and Torres Strait Islander and LGBTQA+ would be at increased risk for poor mental health outcomes due to the layered impacts of discrimination they experience; however, there is very little empirical evidence focused on the mental health and wellbeing of Aboriginal and Torres Strait Islander LGBTQA+ young people. The current study represents a qualitative exploration of wellbeing among Aboriginal LGBTQA+ young people. This study consisted of semi-structured interviews and focus groups with Aboriginal LGBTQA+ young people aged 14–25 years old in the Perth metropolitan area of Western Australia. Thematic analysis identified seven major themes that were significant to participants’ wellbeing: identity, family, community, visibility, services, stigma and navigating.

Objectives The aim of the present study was to provide descriptive planning data for a hospital-based Aboriginal Health Liaison Officer (AHLO) program, specifically quantifying episodes of care and outcomes within 28 days after discharge. Methods A follow-up study of Aboriginal in-patient hospital episodes was undertaken using person-based linked administrative data from four South Metropolitan hospitals in Perth, Western Australia (2006–11). Outcomes included 28-day deaths, emergency department (ED) presentations and in-patient re-admissions. Results There were 8041 eligible index admissions among 5113 individuals, with episode volumes increasing by 31% over the study period. Among patients 25 years and older, the highest ranking comorbidities included injury (47%), drug and alcohol disorders (41%), heart disease (40%), infection (40%), mental illness (31%) and diabetes (31%). Most events (96%) ended in a regular discharge. Within 28 days, 24% of events resulted in ED presentations and 20% resulted in hospital re-admissions. Emergency readmissions (13%) were twice as likely as booked re-admissions (7%). Stratified analyses showed poorer outcomes for older people, and for emergency and tertiary hospital admissions. Conclusions Future planning must address the greater service volumes anticipated. The high prevalence of comorbidities requires intensive case management to address case complexity. These data will inform the refinement of the AHLO program to improve in-patient experiences and outcomes. What is known about the topic? The health gap between Aboriginal and non-Aboriginal Australians is well documented. Aboriginal people have significantly higher hospital utilisation rates, as well as higher rates of complications, comorbidities and discharges against medical advice (DAMA). Aboriginal patients receive most of their specialist services in hospital; however, detailed person-based analyses are limited and planning is often based on crude data. What does this paper add? This is the first analysis of linked data focusing on Aboriginal patient flows and volume and 28-day health system outcomes following hospital admission for all causes in a large metropolitan setting. Because the data were linked, admissions belonging to a single episode of care were combined, ensuring that transfers were not counted as re-admissions. Linkage also allowed follow up across time. The results highlight the main disease groups for which Aboriginal patients are admitted, how this varies by age and the high proportion of patients returning to (any) hospital within 28 days, either through EDs or as booked (pre-arranged) admissions. These data aid in the planning of hospital-based Aboriginal health liaison services. What are the implications for practitioners? The paper outlines the complexity with which many Aboriginal patients present to hospital and the risk of DAMA and re-admission. Clinical and organisational strategies can be put in place in hospitals to address these risks and ensure improved continuity of care with community-based primary health services. The Western Australian South Metropolitan Health Service is reviewing these data and will monitor the impact of the hospital-based AHLO program.

Despite growing acknowledgement of the socially determined nature of health disparities among Aboriginal people, how to respond to this within health promotion programs can be challenging. The legacy of Australia’s assimilation policies have left profound consequences, including social marginalisation, limited educational opportunities, normalisation of premature death, and entrenched trauma. These social determinants, in conjunction with a reluctance to trust authorities, create barriers to accessing healthcare services for the prevention, treatment, and rehabilitation of chronic disease. The Heart Health program is a culturally sensitive cardiac rehabilitation program run at the local Aboriginal Medical Service in Perth, Western Australia that has since moved beyond cardiac education to provide a holistic approach to chronic disease management. A participatory action research framework was used to explore Heart Health participant and service provider perspectives on the barriers, enablers, and critical success factors to program participation and behaviour change. Thematic analysis of interview transcripts was undertaken, and through yarning (Aboriginal storytelling) sessions, many participants made unprompted reference to the impacts of white settlement, discrimination, and the forced fracturing of Aboriginal families, which have been explored in this paper reiterating the need for a social determinants lens to be taken when planning and implementing Aboriginal health promotion programs.

This study examined the prevalence of the intestinal spirochaetes Brachyspira aalborgi and Brachyspira pilosicoli in different Western Australian (WA) populations. Faecal samples included 287 from rural patients with gastrointestinal symptoms, comprising 142 from non-Aboriginal and 145 from Aboriginal people; 227 from recent healthy migrants to WA from developing countries; and 90 from healthy non-Aboriginal individuals living in Perth, WA. DNA was extracted from faeces, and subjected to PCR assays for both species. B. pilosicoli-positive individuals were confined to the rural Aboriginal (14·5%) and migrant (15·0%) groups. B. aalborgi was detected at a lower but similar prevalence in all four groups: rural non-Aboriginals, 5·6%; rural Aboriginals, 6·9%; migrants, 7·9%; controls, 5·6%. In migrants and Aborigines, the presence of B. pilosicoli and B. aalborgi was associated (P<0·001), suggesting that colonization by B. pilosicoli may be facilitated by colonization with B. aalborgi. Amongst the Aboriginal patients, logistic regression identified both spirochaete species as being associated with chronic diarrhoea, failure to thrive and being underweight. Both species may have pathogenic potential, but B. aalborgi appears more host-adapted than the opportunistic B. pilosicoli.

IntroductionMainstream Australian mental health services are failing Aboriginal young people. Despite investing resources, improvements in well-being have not materialised. Culturally and age appropriate ways of working are needed to improve service access and responsiveness. This Aboriginal-led study brings Aboriginal Elders, young people and youth mental health service staff together to build relationships to co-design service models and evaluation tools. Currently, three Western Australian youth mental health services in the Perth metropolitan area and two regional services are working with local Elders and young people to improve their capacity for culturally and age appropriate services. Further Western Australian sites will be engaged as part of research translation.Methods and analysisRelationships ground the study, which utilises Indigenous methodologies and participatory action research. This involves Elders, young people and service staff as co-researchers and the application of a decolonising, strengths-based framework to create the conditions for engagement. It foregrounds experiential learning and Aboriginal ways of working to establish relationships and deepen non-Aboriginal co-researchers’ knowledge and understanding of local, place-based cultural practices. Once relationships are developed, co-design workshops occur at each site directed by local Elders and young people. Co-designed evaluation tools will assess any changes to community perceptions of youth mental health services and the enablers and barriers to service engagement.Ethics and disseminationThe study has approval from the Kimberley Aboriginal Health Planning Forum Kimberley Research Subcommittee, the Western Australian Aboriginal Health Ethics Committee, and the Curtin University Human Research Ethics Committee. Transferability of the outcomes across the youth mental health sector will be directed by the co-researchers and is supported through Aboriginal and non-Aboriginal organisations including youth mental health services, peak mental health bodies and consumer groups. Community reports and events, peer-reviewed journal articles, conference presentations and social and mainstream media will aid dissemination.

The first section of the paper makes some observations about young people, crime and the police, and the particular vulnerability of Aboriginal youth coming to the attention of the police. Two issues, the maintenance of public order and juvenile offending, provide the framework for the discussion here. The second section looks at the nexus between the pre-trial conference - a recent innovation in the Children's Court in Perth - police prosecutors, and Aboriginal youth.

Background: Complex, ongoing social factors have led to a context where metabolic syndrome (MetS) is disproportionately high in Aboriginal Australians. MetS is characterised by insulin resistance, abdominal obesity, hypertension, hypertriglyceridemia, high blood-sugar and low HDL-C. This descriptive study aimed to document physical activity levels, including domains and intensity and sedentary behaviour, and MetS risk factors in the Perth Aboriginal (predominately Noongar) community. Methods: The Global Physical Activity Questionnaire (GPAQ), together with a questionnaire on self-reported MetS risk factors, was circulated to community members for completion during 2014 (n = 129). Results: Data were analysed using chi-squared tests. The average (SD) age was 37.8 years (14) and BMI of 31.4 (8.2) kg/m2. Occupational, transport-related and leisure-time physical activity (PA) and sedentary intensities were reported across age categories. The median (interquartile range) daily sedentary time was 200 (78, 435), 240 (120, 420) and 180 (60, 300) minutes for the 18–25, 26–44 and 45+ year-olds, respectively (p = 0.973). Conclusions: An in-depth understanding of the types, frequencies and intensities of PA reported for the Perth Aboriginal community is important to implementing targeted strategies to reduce the prevalence of chronic disease in this context. Future efforts collaborating with community should aim to reduce the risk factors associated with MetS and improve quality of life.

ObjectiveThe aim of this study was to identify the hepatitis C treatment intentions of Aboriginal people living with hepatitis C virus (HCV) in Western Australia. MethodsThis study used a mixed-methods design. In the cross-sectional survey, 123 Aboriginal people who inject drugs and self-report as living with hepatitis C completed a purpose-designed questionnaire. In the qualitative phase, 10 participants were interviewed about the factors influencing their future intentions to undertake hepatitis C treatment. ResultsAnalysis of the survey data revealed significant associations between an intention to undertake hepatitis C treatment and support, community attachment, stable housing and stigma. In addition, there was a high overall level of expressed intention to undertake HCV treatment, with 54% of participants responding positively. Analysis of the qualitative data supported quantitative findings, revealing concerns about stigma, lack of social support and unstable housing as factors affecting the intention to undertake hepatitis C treatment. ConclusionThis mixed methods study with Aboriginal people living with self-reported HCV indicates interventions focused on reducing stigma and unstable housing could positively affect hepatitis C treatment intentions. These findings have implications for developing holistic programs to promote and support people on hepatitis C treatment. What is known about the topic?Substantial knowledge gaps need to be resolved if HCV elimination among Aboriginal Australians is to be achieved. Current research has prioritised non-Aboriginal communities. What does this paper add?This study found that stigma and unstable housing require attention if Aboriginal Australians are to obtain the full benefits of direct acting antiviral (DAA) hepatitis C treatment. What are the implications for practitioners?Reducing stigma (in the primary healthcare setting) and providing access to stable housing are vital components of supportive, non-judgemental and culturally appropriate care for Aboriginal people. This study highlights the importance of education for nurses and other primary care providers to increase engagement in the hepatitis cascade of care. To achieve this, scaling-up of HCV treatment engagement, trained Aboriginal community healthcare workers and HCV treatment advocates must mobilise and support Aboriginal people to avoid the negative effects of stigma, build positive and enabling relationships and reinforce positive attitudes towards DAA hepatitis C treatment.

Australians living in rural and remote areas have poorer access to dental care. This situation is attributed to workforce shortages, limited facilities and large distances to care centres. Against this backdrop, rural and remote Indigenous (Aboriginal) communities in Western Australia seem to be more disadvantaged because evidence suggests they have poorer oral health than non-Indigenous people. Hence, provision of dental care for Aboriginal populations in culturally appropriate settings in rural and remote Western Australia is an important public health issue. The aim of this research was to compare services between the Aboriginal Medical Services (AMS)-based clinics and a typical rural community clinic. A retrospective analysis of patient demographics and clinical treatment data was undertaken among patients who attended the dental clinics over a period of 6 years from 1999 to 2004. The majority of patients who received dental care at AMS dental clinics were Aboriginal (95.3%), compared with 8% at the non-AMS clinic. The rate of emergency at the non-AMS clinic was 33.5%, compared with 79.2% at the AMS clinics. The present study confirmed that more Indigenous patients were treated in AMS dental clinics and the mix of dental care provided was dominated by emergency care and oral surgery. This indicated a higher burden of oral disease and late utilisation of dental care services (more focus on tooth extraction) among rural and remote Indigenous people in Western Australia.

Background: Aboriginal Australians are disproportionately affected by homelessness, with traditional housing models failing to recognise the importance of kinship obligations and ongoing systemic racism. The Wongee Mia project is a pilot initiative emerging out of a Housing First project tackling homelessness among Perth’s most vulnerable rough sleepers. The project takes a different approach to working with and providing long-term housing to Aboriginal families in Perth, Western Australia. Methods: The Wongee Mia project is centred around one person “Robby” and his family to prevent eviction. Data are collected from monthly action research meetings, yarning sessions with family Elders, and case notes. Results: The project identified 32 family members who had potential to place “Robby’s” tenancy at risk. As at December 2019, 29 members of Robby’s family have been supported by the Wongee Mia case workers, and five have been housed. Key elements of Wongee Mia are the broader links to end homelessness initiatives (the Housing First program), the cultural backgrounds of the case workers and their ability to connect in a meaningful way with the family, Elder involvement (including the co-production of this paper), and an underlying action research model enabling program delivery improvements. Conclusion: The Wongee Mia project offers an innovative way of working with families to prevent unnecessary eviction by working through the whole family’s needs rather than those of an individual in relation to housing.

IntroductionAboriginal and Torres Strait Islander (hereafter respectfully referred to as Aboriginal) people are Australia’s First Peoples, having the longest continuous culture in the world and deep spiritual connections with ancestral land. Improvements in their health and well-being is a major policy goal of Australian governments, as the legacy of colonisation and disruption of cultural practices contribute to major health challenges. Lack of culturally secure services impacts participation of Aboriginal people in health services. Aboriginal people with a brain injury typically experience poor access to rehabilitation and support following hospital discharge. ‘Healing Right Way’ (HRW) is a randomised control trial aiming to improve access to interdisciplinary and culturally secure rehabilitation services for Aboriginal people after brain injury in Western Australia, improve health outcomes and provide the first best practice model. This protocol is for the process evaluation of the HRW trial.Methods and analysisA prospective mixed methods process evaluation will use the Consolidated Framework for Implementation Research to evaluate implementation and intervention processes involved in HRW. Data collection includes qualitative and quantitative data from all sites during control and intervention phases, relating to three categories: (1) implementation of trial processes; (2) cultural security training; and (3) Aboriginal Brain Injury Coordinator role. Additional data elements collected from HRW will support the process evaluation regarding fidelity and intervention integrity. Iterative cross-sectional and longitudinal data synthesis will support the implementation of HRW, interpretation of findings and inform future development and implementation of culturally secure interventions for Aboriginal people.Ethics and disseminationThis process evaluation was reviewed by The University of Western Australia Human Research Ethics Committee (RA/4/20/4952). Evaluation findings will be disseminated via academic mechanisms, seminars at trial sites, regional Aboriginal health forums, peak bodies for Aboriginal health organisations and the Australian Indigenous HealthInfoNet (https://healthinfonet.ecu.edu.au/).Trial registration numberACTRN12618000139279.

The Remote Area Developments Group in the Institute for Environmental Science at Murdoch University developed a video and booklet education package on water conservation. The package was developed after research, review of current efforts in water conservation, and consultation with communities showed that there was a need in this area. The package was distributed to all communities within Western Australia. Several different workshops were conducted with Indigenous Environmental Health Workers from around Western Australia in remote areas and in the Perth Metropolitan communities using the package. This paper will briefly describe the opportunities and constraints that exist for water conservation in remote Aboriginal communities in Western Australia as well as give an evaluation of the education package based on workshops, trials and survey instrument. This paper will explain the conclusions that have been drawn from the study: that a broad delivery style is the most advantageous style for remote communities, allowing the facilitator to assess the best style of delivery.

Place is central to the identity of Aboriginal and Torres Strait Islander peoples. The Narrabeen Camp Project explores the use of immersive technologies to offer opportunities to engage with Indigenous histories, Storytelling and cultural heritage in ways that privilege place. While nothing can replace being ‘on Country’, the XR technologies of AR and VR support different modalities of engagement with real, and virtual, place. The project documents the Stories, Language and Lore associated with the Gai-mariagal clan and, in particular, with the Aboriginal Camp that existed on the north-western shore of Narrabeen Lakes from the end of the last ice age to 1959 when it was demolished to make way for the Sydney Academy of Sports and Recreation. The project will investigate evolving Aboriginal Storytelling dynamics when using immersive digital media to teach culture and to document a historically important site that existed for thousands of years prior to its demolition in the mid-twentieth century. It expects to generate new knowledge about Aboriginal Storytelling and about the history of urban Aboriginals. Expected outcomes include a schema connecting Aboriginal Storytelling with immersive digital technologies, and truth-telling that advances understanding of modern Australia and urban Aboriginal people. The research should promote better mental, social and emotional health and wellbeing for Indigenous Australians and benefit all Australians culturally, socially and economically.

AbstractThe Martu people originate from the Pilbara region in Western Australia. Despite policies of removal, incarceration in prison and the need to leave community fo health services, Martu maintain identity and connection to country. Their narratives have used to inform a wider Australian audience about the history and culture of Aboriginal people. But the stories have also received criticism and been the subject of a Westernised anthropological view. With the emergence of storytelling as method in the academy, a new space is being created for Aboriginal and non-Aboriginal people to find a more robust foothold within the Social Sciences to story our world. This paper is written by three Martu people who position storytelling as transmission and preservation of cultural knowledge and to privilege a voice to speak back to Western academics. Storytelling also brings an opportunity to engage with an Aboriginal worldview, to use narrative as an inquiry into ontology and one's connection to people and place. This brings benefits to all Australians seeking stories of country, connection and identity.

Groups at seasonal risk for deliberate self-harm (DSH) vary according to their geographic location. It is unknown, however, if seasonal risk factors for DSH are associated with place of birth or place of residence as these are confounded in all studies to date. In order to disaggregate place of birth from place of residence we examined general and seasonal risk factors for DSH in three different population birth groups living in Western Australia: Australian Aborigines, Australian born non-Aborigines, and UK migrants. We found Aborigines are at much higher general risk for DSH than non-Aborigines, but are not at seasonal risk, whereas non-Aboriginal Australians and UK migrants are. For UK migrants, this is only found for females. For all groups at seasonal risk this peaks during the austral (southern hemisphere) spring/summer. Furthermore, non-Aboriginal Australians and UK migrants show a consistent pattern of increased case fatality with increasing age. In contrast, case fatality does not increase with age among Australian Aborigines. Overall, despite living in the same environment, the three birth groups show different patterns of seasonal risk for DSH. In particular, the sex difference found between UK migrants and non-Aboriginal Australian birth groups suggests that predisposition toward seasonal risk for DSH is established early in life, but when present this is expressed according to local conditions.

Objectives: To examine the accessibility and quality of care received in emergency departments by Aboriginal and Torres Strait Islander people compared with other Australians. Methods: We examined 2004?05 data from the National Non-admitted Patient Emergency Department Care database from the Northern Territory and Western Australia, the only jurisdictions where Indigenous identification in the database was considered acceptable. Results: In the NT, Indigenous people were 1.7 times as likely to present to an emergency department as non-Indigenous people. Indigenous patients in the NT and WA do not appear to use EDs for ?primary care? problems more than non- Indigenous patients. More NT Indigenous patients walked out before being seen or before their treatment was completed. However, Indigenous patients generally waited a similar time, and often slightly shorter, to be seen as similar non-Indigenous patients in WA and the NT. Conclusions: We recommend the regular monitoring of equity in the accessibility and quality of ED care for Indigenous people compared with other Australians. Indigenous identification in the database needs to improve so monitoring of ED performance can extend beyond WA and the NT.

Despite decades of evidence showing that institutional and interpersonal racism serve as significant barriers to accessible healthcare for Aboriginal and Torres Strait Islander Peoples, attempts to address this systemic problem still fall short. The social determinants of health are particularly poignant given the socio-political-economic history of invasion, colonisation, and subsequent entrenchment of racialised practices in the Australian healthcare landscape. Embedded within Euro-centric, bio-medical discourses, Western dominated healthcare processes can erase significant cultural and historical contexts and unwittingly reproduce unsafe practices. Put simply, if Black lives matter in healthcare, why do Aboriginal and Torres Strait Islander Peoples die younger and experience ‘epidemic’ levels of chronic diseases as compared to white Australians? To answer this, we utilise critical race perspectives to theorise this gap and to de-center whiteness as the normalised position of ‘doing’ healthcare. We draw on our diverse knowledges through a decolonised approach to promote a theoretical discussion that we contend can inform alternative ways of knowing, being, and doing in healthcare practice in Australia.

Humankind has been present on the Australian continent for at least 40 000, some say 60 000 years, remarkably adapted to the environment and having a cultural tradition appreciated by few Caucasians. White people have been here for only 200 years; and psychiatry for about half of that. We know nothing about the mental health of pre-contact indigenous peoples; but we now know a little about the ways in which mental disorders are explained and treated by traditional methods. In two centuries, the Aboriginal and Torres Strait Islands communities, which are very diverse, have been steadily reduced to become only 1.5% of the population. From settlement in 1788 until the 1950s, most non-aboriginal Australians were of Anglo-Saxon or Celtic origin. Since the Second World War, the pattern of immigration has greatly enriched Australian life, first through large numbers of people from the Mediterranean littoral, Western Europe and the Balkans, and more recently from south-east Asia. Ethnic diversity is now evident in most peoples' daily lives – whom you see in the street, whom you work alongside, who your friends are, what you eat and who you have as patients. So the present Australian population of 18 million has undergone a marked change in demography and lifestyle within only two generations. Like the people, psychiatry is also changing rapidly. Where are the changes taking place? What is it like to be a psychiatrist here at present? Where has there been success and where has there been failure? Where is there lots of action?

ABSTRACTBackground:A quality dementia-screening tool is required for older remote Aboriginal Australians who have high rates of dementia and limited access to appropriate medical equipment and clinicians. The Kimberley Indigenous Cognitive Assessment (KICA Cog) is a valid cognitive test for dementia in Aboriginal and Torres Strait Islander peoples. The KICA cognitive informant questionnaire (KICA Carer) had yet to be analyzed to determine validity alone or in combination with the KICA Cog.Methods:The KICA Carer was completed by nominated informants of 349 remote-living Aboriginal Australians in the Kimberley region, Western Australia. Validity was assessed by comparing KICA Carer with Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) and International Classification of Diseases (ICD-10) consensus diagnoses based on a blinded specialist review. KICA Carer and KICA Cog were then compared to determine joint validity.Results:A KICA Carer score of ≥3/16 gave optimum sensitivity (76.2%) and specificity (81.4%), area under curve (AUC) 0.89 (95% CI = 0.85, 0.94) with positive predictive value (PPV) of 35.8%, and negative predictive value (NPV) of 96.2%. A KICA Cog score of ≤33/39 gave a sensitivity of 92.9% and specificity of 89.9%, AUC 0.96 (95% CI = 0.94, 0.98), with PPV of 55.6% and NPV of 98.9%. Cut-off scores of KICA Cog ≤ 33/39 and KICA Carer ≥ 2/16 in series indicate possible dementia, with sensitivity of 90.5% and specificity of 93.5%. In this setting, PPV was 66.5% and NPV was 98.6%.Conclusions:The KICA Carer is an important tool to accurately screen dementia in remote Aboriginal Australians when the KICA Cog is unable to be used for a patient. It is readily accepted by caregivers.Key points:•For the best practice in the cognitive assessment of an Aboriginal Australian aged over 45 years, KICA Cog should be utilized.•In cases where Aboriginal patients are not assessed directly, KICA Carer should be conducted with an informant. A cut-off score of ≥3/16 should be used (these tools can be downloaded fromwww.wacha.org.au/kica.html).

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing.

Cultural security is a key element of accessible services for Indigenous peoples globally, although few studies have examined this empirically. We explored the scope, reach, quality, and cultural security of health and social services available to Aboriginal and/or Torres Strait Islander families in Western Australia (WA), from the point of view of staff from the services. We recruited staff from health and social services for Aboriginal people in the Perth, Kalgoorlie, Great Southern, and South West regions of WA between December 2015 and September 2017 to complete online surveys. We examined the proportions of participants that responded saying the service was culturally secure, the reasons for the response, and perceived factors related to a high-quality service. Sixty participants from 21 services responded to the survey. Seventy-three percent stated the service was culturally secure; however, only 36% stated that the staff employed at the service had sufficient knowledge on cultural security. Participants suggested having Aboriginal staff and better cultural awareness training as methods to improve cultural security within the service. Participants highlighted that staffing, funding for resources, and patient financial difficulties in accessing care as key areas for quality improvement. Much greater effort is required in improving knowledge through on-going training of staff in the practice of culturally safe care. Organisations must also be required to meet specific standards in cultural safety.

Background: Food Sensations for Adults, funded by the Western Australian Department of Health, is a four-week nutrition education program focused on food literacy, with demonstrated success amongst Western Australians. In the last two years, 25% of programs have been in regional and remote areas and therefore the aim of this research is to explore the impact of the program in regional areas. Methods: Participants answered validated pre- and post-questionnaires to assess change in food literacy behaviours (2016–2018). Results: Regional participants (n = 451) were more likely to live in low income areas, have lower education levels, and identify as Aboriginal, than metropolitan participants (n = 1398). Regional participants had statistically significantly higher food literacy behaviours in the plan and manage and preparation domains, and lower selection behaviours at baseline than metropolitan participants. Post program, regional participants showed matched improvements with metropolitan participants in the plan and manage, and preparation domains. Food selection behaviour results increased in both groups but were significantly higher in regional participants. Conclusions: The program demonstrates effective behaviour change in all participants; however, the increased disadvantage experienced by people residing outside of major cities highlights the need for additional government support in addressing regional specific barriers, such as higher food costs, to ensure participants gain maximum benefit from future food literacy programs.

In the wake of the Indian Uprising in 1857, British sanitary campaigner and statistician Florence Nightingale renewed her efforts to reform Britain's military forces at home and in India. With the Uprising following so soon after the Crimean War (1854-56), where poor sanitary conditions had also taken an enormous toll, in 1859 Nightingale pressed the British Parliament to establish a Royal Commission on the Sanitary State of the Army in India, which delivered its report in 1863. Western Australia was the only colony to present its case before the Commissioners as an ideal location for a foreign sanatorium, with glowing assessments offered by colonial elites and military physicians. In the meantime, Nightingale had also commenced an investigation into the health of Indigenous children across the British Empire. Nearly 150 schools responded to her survey from Ceylon, Natal, West Africa, Canada and Australia. The latter's returns came from just three schools in Western Australia: New Norcia, Annesfield in Albany and the Sisters of Mercy in Perth, which together yielded the highest death rate of the respondents. Although Nightingale herself saw these inquiries as separate, their juxtaposition invites closer analysis of the ways in which metropolitan elites envisioned particular racial futures for Anglo and indigenous populations of empire, and sought to steer them accordingly. The reports reflect prevailing expectations and anxieties about the social and biological reproduction of white society in the colonies, and the concomitant decline of Indigenous peoples. Read together, these two inquiries reveal the complex ways in which colonial matters of reproduction and dispossession, displacement and replacement, were mutually constituting concerns of empire. In this article I situate the efforts to attract white women and their wombs to the temperate colony of Western Australia from British India in the context of contemporary concerns about Anglo and Aboriginal mortality. In doing so, I reflect on the intersections of gender, race, medicine and environment in the imaginaries of empire in the mid-nineteenth century.

IntroductionDespite higher incidence of brain injury among Aboriginal compared with non-Aboriginal Australians, suboptimal engagement exists between rehabilitation services and Aboriginal brain injury survivors. Aboriginal patients often feel culturally insecure in hospital and navigation of services post discharge is complex. Health professionals report feeling ill-equipped working with Aboriginal patients. This study will test the impact of a research-informed culturally secure intervention model for Aboriginal people with brain injury.Methods and analysisDesign: Stepped wedge cluster randomised control trial design; intervention sequentially introduced at four pairs of healthcare sites across Western Australia at 26-week intervals.Recruitment: Aboriginal participants aged ≥18 years within 4 weeks of an acute stroke or traumatic brain injury.Intervention: (1) Cultural security training for hospital staff and (2) local, trial-specific, Aboriginal Brain Injury Coordinators supporting participants.Primary outcome: Quality-of-life using EuroQOL-5D-3L (European Quality of Life scale, five dimensions, three severity levels) Visual Analogue Scale score at 26 weeks post injury. Recruitment of 312 participants is estimated to detect a difference of 15 points with 80% power at the 5% significance level. A linear mixed model will be used to assess the between-condition difference.Secondary outcome measures: Modified Rankin Scale, Functional Independence Measure, Modified Caregiver Strain Index, Hospital Anxiety and Depression Scale at 12 and 26 weeks post injury, rehabilitation occasions of service received, hospital compliance with minimum care processes by 26 weeks post injury, acceptability of Intervention Package, feasibility of Aboriginal Brain Injury Coordinator role.Evaluations: An economic evaluation will determine the potential cost-effectiveness of the intervention. Process evaluation will document fidelity to study processes and capture changing contexts including barriers to intervention implementation and acceptability/feasibility of the intervention through participant questionnaires at 12 and 26 weeks.Ethics and disseminationThe study has approvals from Aboriginal, university and health services human research ethics committees. Findings will be disseminated through stakeholder reports, participant workshops, peer-reviewed journal articles and conference papers.Trial registration numberACTRN12618000139279.

PurposeThe purpose of the Raine Study is to improve human health and well-being by studying the life-course of a cohort of Western Australians, based on a life-course conceptual framework that considers interactions between genetics, phenotypes, behaviours, the environment and developmental and social outcomes.ParticipantsBetween May 1989 and November 1991, 2900 pregnant women were enrolled in the Raine Study in Perth, Western Australia. In total, 2730 women gave birth to 2868 children (Generation 2) between August 1989 and April 1992. The mothers and fathers of Generation 2 are referred to as Generation 1 of the Raine Study. In the most recent Generation 1 follow-up, 636 mothers and 462 fathers participated.Findings to dateUntil the 26-year follow-up of Generation 1 the focus of research within the Raine Study was on outcomes in Generation 2, with information on the parents mainly being used to examine its influence on their children’s outcomes. For example, recent findings showed that several characteristics of mothers, such as obesity, early mid-gestational weight gain and socioeconomic status were associated with non-alcoholic fatty liver disease, adiposity and cardiometabolic characteristics in offspring. Other findings showed that parents with back pain were more likely to have offspring who experienced back pain. Also, non-linear and dynamic relationships were found between maternal working hours and offspring overweight or obesity.Future plansThe Raine Study will continue to provide access to its dense longitudinal genetic, phenotypic, behavioural, environmental, developmental and social data to undertake studies with the ultimate goal of improving human health and well-being. Analyses of data from the recent Generation 1 year 26 follow-up are underway.Trial registration numberACTRN12617001599369

AbstractObjectiveTo investigate the experiences of women participating in a cooking and nutrition component of a health promotion research initiative in an Australian Aboriginal regional community.DesignWeekly facilitated cooking and nutrition classes were conducted during school terms over 12 months. An ethnographic action research study was conducted for the programme duration with data gathered by participant and direct observation, four yarning groups and six individual yarning sessions. The aim was to determine the ways the cooking and nutrition component facilitated lifestyle change, enabled engagement, encouraged community ownership and influenced community action.SettingRegional Bindjareb community in the Nyungar nation of Western Australia.SubjectsA sample of seventeen Aboriginal women aged between 18 and 60 years from the two kinships in two towns in one shire took part in the study. The recruitment and consent process was managed by community Elders and leaders.ResultsMajor themes emerged highlighting the development of participants and their recognition of the need for change: the impact of history on current nutritional health of Indigenous Australians; acknowledging shame; challenges of change around nutrition and healthy eating; the undermining effect of mistrust and limited resources; the importance of community control when developing health promotion programmes; finding life purpose through learning; and the need for planning and partnerships to achieve community determination.ConclusionsSuggested principles for developing cooking and nutrition interventions are: consideration of community needs; understanding the impact of historical factors on health; understanding family and community tensions; and the engagement of long-term partnerships to develop community determination.

Research remains a site of struggle for First Nations peoples globally. Biomedical research often reinforces existing power structures, perpetuating ongoing colonisation by dominating research priorities, resource allocation, policies, and services. Addressing systemic health inequities requires decolonising methodologies to facilitate new understandings and approaches. These methodologies promote a creative tension and productive intercultural dialogue between First Nations and Western epistemologies. Concurrently, the potential of critical theory, social science, and community participatory action research approaches to effectively prioritise First Nations peoples’ lived experience within the biomedical worldview is increasingly recognised. This article describes learnings regarding research methods that enable a better understanding of the lived experience of rheumatic heart disease—an intractable, potent marker of health inequity for First Nations Australians, requiring long-term engagement in the troubled intersection between Indigenist and biomedical worldviews. Working with Yolŋu (Aboriginal) co-researchers from remote Northern Territory (Australia), the concept of ganma (turbulent co-mingling of salt and fresh water) was foundational for understanding and applying relationality (gurrutu), deep listening (nhina, nhäma ga ŋäma), and the use of metaphors—approaches that strengthen productive dialogue, described by Yolŋu co-researchers as weaving a ‘mat we can all sit on’. The research results are reported in a subsequent article.

IntroductionOur study aimed to identify factors that influence access to eye care and eye health outcomes for remote Indigenous Australians living with diabetes.MethodsIn collaboration with Indigenous Community-Based Researchers (CBR) and Aboriginal Community Controlled Health Services (ACCHS), a qualitative, participatory action research approach was taken, drawing on Indigenist and decolonising methodologies. The study was undertaken in four remote communities, in the Katherine region, Northern Territory and north-western New South Wales, Australia. Interviews and focus groups were undertaken with Indigenous adults aged ≥40 years living with diabetes (n=110), and primary care clinicians working in ACCHSs (n=37). A series of interviews with CBRs (n=13) were undertaken before and after data collection to add cultural insights and validation to participant accounts. Data were analysed inductively using grounded theory, in-depth discussion and NVivo V.11.ResultsMore than one-third of all patients had little to no knowledge of how diabetes affects eye health. Limited access to health information and interpreters, language barriers, distrust of health providers and services, and limited cultural responsivity among non-Indigenous clinicians, were identified as determining factors in eye health and care.DiscussionWe outline a need to address gaps in trust and communication, through increased access to and resourcing of Indigenous language interpreters and cultural brokers, understandable and culturally sensitive diabetic eye health information and cultural responsivity training for non-Indigenous clinicians. Centring Indigenous cultures in healthcare practice will enable a shared understanding between clinicians and Indigenous patients, and subsequently more equitable eye health outcomes.

The Western Australian (WA) Remote Area Dialysis Programme was developed in 1988 due to the cultural need to dialyze an increasing number of aboriginal patients in their own communities, rather than relocating them up to 3000 km away in Perth. The success of the program relies on remote area health services (RAHS), which have no prior experience in continuous ambulatory peritoneal dialysis (CAPD), providing consistent routine and emergency medical care to the patients. Our aim was to standardize the care of all CAPD patients in remote WA by providing the RAHS with an easy -to-follow manual. Although the RAHS received treatment protocols and in-service education, consistent care was not always provided. We confirmed this by: (1) examining the existing quality assurance tools, peritonitis and hospital admission rates, (2) discussion with remote area staff regarding patients, and (3) informal assessment of remote area staff receptiveness to in-service education by a CAPD nurse. We identified the causes of the inconsistent care to be: (1) high remote area staff turnover (six months average for a registered nurse), (2) the protocols were difficult to follow, and (3) confusion for the RAHS as to the appropriate contact person at our hospital. In 1994, the situation was exacerbated by the dramatic increase in the number of patients and RAHS involved (14 new patients, bringing the total to 20 patients in 12 centers) plus the introduction of a second treating hospital (with differing protocols). A team of two CAPD nurses and two nephrologists was established, to collaborate with two remote area hospitals and the second treating hospital to produce the “Remote Area CAPD Manual.” The manual is an easy-to-follow, stepby-step guide for the management of CAPD by nondialysis personnel. It has led to improved management of CAPD, improvement in communication with RAHS, and the increased confidence of remote area staff in the management of CAPD patients. In conclusion, RAHS can give consistent care if provided with clear, concise guidelines.

Indigenous health inequities persist in Australia due to a system of privilege and racism that has political, economic and social determinants, rather than simply genetic or behavioural causes. Research involving Aboriginal and Torres Strait Islander (‘Indigenous’) communities is routinely funded to understand and address these health inequities, yet current ethical and institutional conventions for Indigenous health research often fall short of community expectations. Typically, mainstream research projects are undertaken using traditional “top-down” approaches to governance that hold inherent tensions with other dominant governance styles and forms. This approach perpetuates long-held power imbalances between those leading the research and those being researched. As an alternative, Indigenous governance focuses on the importance of place, people, relationships and process for addressing power imbalances and achieving equitable outcomes. However, empowering principles of Indigenous governance in mainstream environments is a major challenge for research projects and teams working within organisations that are regulated by Western standards and conventions. This paper outlines the theoretical basis for a new Culturally Adaptive Governance Framework (CAGF) for empowering principles of Indigenous governance as a prerequisite for ethical conduct and practice in Indigenous health research. We suggest new orientations for mainstream research project governance, predicated on translating theoretical and practical attributes of real-world ethics, adaptive governance and critical allyship frameworks to Indigenous health research. The CAGF is being implemented in a national Indigenous multicenter trial evaluating the use of continuous blood glucose monitors as a new technology with the potential to improve diabetes care and treatment for Indigenous Australians—the FlashGM Study. The CAGF is a governance framework that identifies the realities of power, acknowledges the complexities of culture and emerging health technologies, and foregrounds the principle of equity for mainstream Indigenous health research.

IntroductionAchieving parenthood is challenging in individuals receiving renal replacement therapy (RRT; dialysis or kidney transplantation) for end-stage kidney disease. Decision-making regarding parenthood in RRT recipients should be underpinned by robust data, yet there is limited data on parental factors that drive adverse health outcomes. Therefore, we aim to investigate the perinatal risks and outcomes in parents receiving RRT.Methods and analysisThis is a multijurisdictional probabilistic data linkage study of perinatal, hospital, birth, death and renal registers from 1991 to 2013 from New South Wales, Western Australia, South Australia and the Australian Capital Territory. This study includes all babies born ≥20 weeks’ gestation or 400 g birth weight captured through mandated data collection in the perinatal data sets. Through linkage with the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, babies exposed to RRT (and their parents) will be compared with babies who have not been exposed to RRT (and their parents) to determine obstetric and fetal outcomes, birth rates and fertility rates. One of the novel aspects of this study is the method that will be used to link fathers receiving RRT to the mothers and their babies within the perinatal data sets, using the birth register, enabling the identification of family units. The linked data set will be used to validate the parenthood events directly reported to ANZDATA.Ethics and disseminationEthics approval was obtained from Human Research Ethics Committees (HREC) and Aboriginal HREC in each jurisdiction. Findings of this study will be disseminated at scientific conferences and in peer-reviewed journals in tabular and aggregated forms. De-identified data will be presented and individual patients will not be identified. We will aim to present findings to relevant stakeholders (eg, patients, clinicians and policymakers) to maximise translational impact of research findings.

Background Notification rates of gonorrhoea in Australia for heterosexual young adults rose by 63% between 2012 and 2016. In Western Australian major cities, there was a 612% increase among non-Aboriginal females and a 358% increase in non-Aboriginal males in the ten-year period 2007–2016. A qualitative public health investigation was initiated to inform appropriate action. Methods Eighteen semi-structured telephone interviews were conducted with non-Aboriginal heterosexual young adults aged 18–34 years living in Perth, Western Australia, who had recently been notified to the Department of Health with gonorrhoea, to explore the context of their sexual interactions and lifestyles which could have predisposed them to contracting gonorrhoea. Data were thematically analysed. Results Common themes were having several casual sexual partners, limited communication between sexual partners about condom use or sexual history prior to engaging in sexual activity, inconsistent condom use, normalisation of some sexually transmissible infections amongst young people, and poor understandings and assessment of sexually transmissible infection risk. Conclusions The findings support public health interventions that focus on communication between sexual partners and shifting of risk perceptions in sexual health education programs, ensuring accessibility of quality sexual health information, increasing condom accessibility and acceptability, and on strategies for addressing misperceptions of young people in relation to sexually transmitted infections.

‘Historiographic Metafiction’ (HM) is a literary term first coined by creative writing academic Linda Hutcheon in 1988, and which refers to the postmodern practice of a fiction author inserting imagined--or illegitimate--characters into narratives that are intended to be received as authentic and historically accurate, that is, ostensibly legitimate. Such adventurous and bold authorial strategies frequently result in “novels which are both intensely self-reflexive and yet paradoxically also lay claim to historical events and personages” (Hutcheon, A Poetics 5). They can be so entertaining and engaging that the overtly intertextual, explicitly inventive work of biographical HM can even change the “hegemonic discourse of history” (Nunning 353) for, as Philippa Gregory, the author of HM novel The Other Boleyn Girl (2001), has said regarding this genre of creative writing: “Fiction is about imagined feelings and thoughts. History depends on the outer life. The novel is always about the inner life. Fiction can sometimes do more than history. It can fill the gaps” (University of Sussex). In a way, this article will be filling one of the gaps regarding HM.Forrest Gump (Robert Zemeckis, 1994) is possibly the best known cinematic example of HM, and this film version of the 1986 novel by Winston Groom particularly excels in seamlessly inserting images of a fictional character into verified history, as represented by well-known television newsreel footage. In Zemeckis’s adaptation, gaps were created in the celluloid artefact and filled digitally with images of the actor, Tom Hanks, playing the eponymous role. Words are often deemed less trustworthy than images, however, and fiction is considered particularly unreliable--although there are some exceptions conceded. In addition to Gregory’s novel; Midnight’s Children (1980) by Salman Rushdie; The Name of the Rose (1983) by Umberto Eco; and The Flashman Papers (1969-2005) by George MacDonald Fraser, are three well-known, loved and lauded examples of literary HM, which even if they fail to convince the reader of their bona fides, nevertheless win a place in many hearts. But despite the genre’s popularity, there is nevertheless a conceptual gap in the literary theory of Hutcheon given her (perfectly understandable) inability in 1988 to predict the future of e-publishing. This article will attempt to address that shortcoming by exploring the potential for authors of HM e-novels to use hyperlinks which immediately direct the reader to fact providing webpages such as those available at the website Wikipedia, like a much speedier (and more independent) version of the footnotes in Fraser’s Flashman novels.Of course, as Roland Barthes declared in 1977, “the text is a tissue of quotations drawn from innumerable centres of culture” (146) and, as per any academic work that attempts to contribute to knowledge, a text’s sources--its “quotations”--must be properly identified and acknowledged via checkable references if credibility is to be securely established. Hence, in explaining the way claims to fact in the HM novel can be confirmed by independently published experts on the Internet, this article will also address the problem Hutcheon identifies, in that for many readers the entirety of the HM novel assumes questionable authenticity, that is, the novel’s “meta-fictional self-reflexivity (and intertextuality) renders their claims to historical veracity somewhat problematic, to say the least” ("Historiographic Metafiction: Parody", 3). This article (and the PhD in creative writing I am presently working on at Murdoch University in Perth, Western Australia) will possibly develop the concept of HM to a new level: one at which the Internet-connected reader of the hyperlinked e-novel is made fully (and even instantly) aware of those literary elements of the narrative that are legitimate and factual as distinct from those that are fictional, that is, illegitimate. Furthermore, utilising examples from my own (yet-to-be published) hyperlinked HM e-novel, this article demonstrates that such hyperlinking can add an ironic sub-text to a fictional character’s thoughts and utterances, through highlighting the reality concerning their mistaken or naïve beliefs, thus creating HM narratives that serve an entertainingly complex yet nevertheless truly educational purpose.As a relatively new and under-researched genre of historical writing, HM differs dramatically from the better known style of standard historical or biographical narrative, which typically tends to emphasise mimesis, the cataloguing of major “players” in historical events and encyclopaedic accuracy of dates, deaths and places. Instead, HM involves the re-contextualisation of real-life figures from the past, incorporating the lives of entirely (or, as in the case of Gregory’s Mary Boleyn, at least partly) fictitious characters into their generally accepted famous and factual activities, and/or the invention of scenarios that gel realistically--but entertainingly--within a landscape of well-known and well-documented events. As Hutcheon herself states: “The formal linking of history and fiction through the common denominators of intertextuality and narrativity is usually offered not as a reduction, as a shrinking of the scope and value of fiction, but rather as an expansion of these” ("Intertextuality", 11). Similarly, Gregory emphasises the need for authors of HM to extend themselves beyond the encyclopaedic archive: “Archives are not history. The trouble with archives is that the material is often random and atypical. To have history, you have to have a narrative” (University of Sussex). Functionally then, HM is an intertextual narrative genre which serves to communicate to a contemporary audience an expanded story or stories of the past which present an ultimately more self-reflective, personal and unpredictable authorship: it is a distinctly auteurial mode of biographical history writing for it places the postmodern author’s imaginative “signature” front and foremost.Hutcheon later clarified that the quest for historical truth in fiction cannot possibly hold up to the persuasive powers of a master novelist, as per the following rationale: “Fact is discourse-defined: an event is not” ("Historiographic Metafiction", 843). This means, in a rather simplistic nutshell, that the new breed of HM novel writer is not constrained by what others may call fact: s/he knows that the alleged “fact” can be renegotiated and redefined by an inventive discourse. An event, on the other hand, is responsible for too many incontrovertible consequences for it to be contested by her/his mere discourse. So-called facts are much easier for the HM writer to play with than world changing events. This notion was further popularised by Ansgar Nunning when he claimed the overtly explicit work of HM can even change the “hegemonic discourse of history” (353). HM authors can radically alter, it seems, the way the reader perceives the facts of history especially when entertaining, engaging and believable characters are deliberately devised and manipulated into the narrative by the writer. Little wonder, then, that Hutcheon bemoans the unfortunate reality that for many readers the entirety of a HM work assumes questionable “veracity” due to its author’s insertion of imaginary and therefore illegitimate personages.But there is an advantage to be found in this, the digital era, and that is the Internet’s hyperlink. In our ubiquitously networked electronic information age, novels written for publication as e-books may, I propose, include clickable links on the names of actual people and events to Wikipedia entries or the like, thus strengthening the reception of the work as being based on real history (the occasional unreliability of Wikipedia notwithstanding). If picked up for hard copy publication this function of the HM e-novel can be replicated with the inclusion of icons in the printed margins that can be scanned by smartphones or similar gadgets. This small but significant element of the production reinforces the e-novel’s potential status as a new form of HM and addresses Hutcheon’s concern that for HM novels, their imaginative but illegitimate invention of characters “renders their claims to historical veracity somewhat problematic, to say the least” ("Historiographic Metafiction: Parody", 3).Some historic scenarios are so little researched or so misunderstood and discoloured by the muddy waters of time and/or rumour that such hyperlinking will be a boon to HM writers. Where an obscure facet of Australian history is being fictionalised, for example, these edifying hyperlinks can provide additional background information, as Glenda Banks and Martin Andrew might have wished for when they wrote regarding Bank’s Victorian goldfields based HM novel A Respectable Married Woman. This 2012 printed work explores the lives of several under-researched and under-represented minorities, such as settler women and Aboriginal Australians, and the author Banks lamented the dearth of public awareness regarding these peoples. Indeed, HM seems tailor-made for exposing the subaltern lives of those repressed individuals who form the human “backdrop” to the lives of more famous personages. Banks and Andrew explain:To echo the writings of Homi K. Bhaba (1990), this sets up a creative site for interrogating the dominant, hegemonic, ‘normalised’ master narratives about the Victorian goldfields and ‘re-membering’ a marginalised group - the women of the goldfields, the indigenous [sic], the Chinese - and their culture (2013).In my own hyperlinked short story (presently under consideration for publishing elsewhere), which is actually a standalone version of the first chapter of a full-length HM e-novel about Aboriginal Australian activists Eddie Mabo and Chicka Dixon and the history of the Aboriginal Tent Embassy in Canberra, entitled The Bullroarers, I have focussed on a similarly under-represented minority, that being light-complexioned, mixed race Aboriginal Australians. My second novel to deal with Indigenous Australian issues (see Starrs, That Blackfella Bloodsucka Dance), it is my first attempt at writing HM. Hopefully avoiding overkill whilst alerting readers to those Wikipedia pages with relevance to the narrative theme of non-Indigenous attitudes towards light-complexioned Indigenous Australians, I have inserted a total of only six hyperlinks in this 2200-word piece, plus the explanatory foreword stating: “Note, except where they are well-known place names or are indicated as factual by the insertion of Internet hyperlinks verifying such, all persons, organisations, businesses and places named in this text are entirely fictitious.”The hyperlinks in my short story all take the reader not to stubs but to well-established Wikipedia pages, and provide for the uninformed audience the following near-unassailable facts (i.e. events):The TV program, A Current Affair, which the racist character of the short story taken from The Bullroarers, Mrs Poulter, relies on for her prejudicial opinions linking Aborigines with the dealing of illegal drugs, is a long-running, prime-time Channel Nine production. Of particular relevance in the Wikipedia entry is the comment: “Like its main rival broadcast on the Seven Network, Today Tonight, A Current Affair is often considered by media critics and the public at large to use sensationalist journalism” (Wikipedia, “A Current Affair”).The Aboriginal Tent Embassy, located on the lawns opposite the Old Parliament House in Canberra, was established in 1972 and ever since has been the focus of Aboriginal Australian land rights activism and political agitation. In 1995 the Australian Register of the National Estate listed it as the only Aboriginal site in Australia that is recognised nationally for representing Aboriginal and Torres Strait Islander people and their political struggles (Wikipedia, “The Aboriginal Tent Embassy”).In 1992, during an Aboriginal land rights case known as Mabo, the High Court of Australia issued a judgment constituting a direct overturning of terra nullius, which is a Latin term meaning “land belonging to no one”, and which had previously formed the legal rationale and justification for the British invasion and colonisation of Aboriginal Australia (Wikipedia, “Terra Nullius”).Aboriginal rights activist and Torres Strait Islander, Eddie Koiki Mabo (1936 to 1992), was instrumental in the High Court decision to overturn the doctrine of terra nullius in 1992. In that same year, Eddie Mabo was posthumously awarded the Australian Human Rights Medal in the Human Rights and Equal Opportunity Commission Awards (Wikipedia, “Eddie Mabo”).The full name of what Mrs Poulter blithely refers to as “the Department of Families and that” is the Australian Government’s Department of Families, Housing, Community Services and Indigenous Affairs (Wikipedia, “The Department of Families, Housing, Community Services and Indigenous Affairs”).The British colonisation of Australia was a bloody, murderous affair: “continuous Aboriginal resistance for well over a century belies the ‘myth’ of peaceful settlement in Australia. Settlers in turn often reacted to Aboriginal resistance with great violence, resulting in numerous indiscriminate massacres by whites of Aboriginal men, women and children” (Wikipedia, “History of Australia (1788 - 1850)”).Basically, what is not evidenced empirically with regard to the subject matter of my text, that is, the egregious attitudes of non-Indigenous Australians towards Indigenous Australians, can be extrapolated thanks to the hyperlinks. This resonates strongly with Linda Tuhiwai Smith’s assertion in 2012 that those under-represented by mainstream, patriarchal epistemologies need to be engaged in acts of “reclaiming, reformulating and reconstituting” (143) so as to be re-presented as authentic identities in these HM artefacts of literary research.Exerting auteurial power as an Aboriginal Australian author myself, I have sought to imprint on my writing a multi-levelled signature pertaining to my people’s under-representation: there is not just the text I have created but another level to be considered by the reader, that being my careful choice of Wikipedia pages to hyperlink certain aspects of the creative writing to. These electronic footnotes serve as politically charged acts of “reclaiming, reformulating and reconstituting” Aboriginal Australian history, to reuse the words of Smith, for when we Aboriginal Australian authors reiterate, when we subjugated savages wrestle the keyboard away from the colonising overseers, our readers witness the Other writing back, critically. As I have stated previously (see Starrs, "Writing"), receivers of our words see the distorted and silencing master discourse subverted and, indeed, inverted. Our audiences are subjectively repositioned to see the British Crown as the monster. The previously presumed rational, enlightened and civil coloniser is instead depicted as the author and perpetrator of a violently racist, criminal discourse, until, eventually, s/he is ultimately eroded and made into the Other: s/he is rendered the villainous, predatory savage by the auteurial signatures in revisionist histories such as The Bullroarers.Whilst the benefit in these hyperlinks as electronic educational footnotes in my short story is fairly obvious, what may not be so obvious is the ironic commentary they can make, when read in conjunction with the rest of The Bullroarers. Although one must reluctantly agree with Wayne C. Booth’s comment in his classic 1974 study A Rhetoric of Irony that, in some regards, “the very spirit and value [of irony] are violated by the effort to be clear about it” (ix), I will nevertheless strive for clarity and understanding by utilizing Booth’s definition of irony “as something that under-mines clarities, opens up vistas of chaos, and either liberates by destroying all dogmas or destroys by revealing the inescapable canker of negation at the heart of every affirmation” (ix). The reader of The Bullroarers is not expecting the main character, Mrs Poulter, to be the subject of erosive criticism that destroys her “dogmas” about Aboriginal Australians--certainly not so early in the narrative when it is unclear if she is or is not the protagonist of the story--and yet that’s exactly what the hyperlinks do. They expose her as hopelessly unreliable, laughably misinformed and yes, unforgivably stupid. They reveal the illegitimacy of her beliefs. Perhaps the most personally excoriating of these revelations is provided by the link to the Wikipedia entry on the Australian Government’s Department of Families, Housing, Community Services and Indigenous Affairs, which is where her own daughter, Roxy, works, but which Mrs Poulter knows, gormlessly, as “the Department of Families and that”. The ignorant woman spouts racist diatribes against Aboriginal Australians without even realising how inextricably linked she and her family, who live at the deliberately named Boomerang Crescent, really are. Therein lies the irony I am trying to create with my use of hyperlinks: an independent, expert adjudication reveals my character, Mrs Poulter, and her opinions, are hiding an “inescapable canker of negation at the heart of every affirmation” (Booth ix), despite the air of easy confidence she projects.Is the novel-reading public ready for these HM hyperlinked e-novels and their potentially ironic sub-texts? Indeed, the question must be asked: can the e-book ever compete with the tactile sensations a finely crafted, perfectly bound hardcover publication provides? Perhaps, if the economics of book buying comes into consideration. E-novels are cheap to publish and cheap to purchase, hence they are becoming hugely popular with the book buying public. Writes Mark Coker, the founder of Smashwords, a successful online publisher and distributor of e-books: “We incorporated in 2007, and we officially launched the business in May 2008. In our first year, we published 140 books from 90 authors. Our catalog reached 6,000 books in 2009, 28,800 in 2010, 92,000 in 2011, 191,000 in 2012 and as of this writing (November 2013) stands at over 250,000 titles” (Coker 2013). Coker divulged more about his company’s success in an interview with Forbes online magazine: “‘It costs essentially the same to pump 10,000 new books a month through our network as it will cost to do 100,000 a month,’ he reasons. Smashwords book retails, on average, for just above $3; 15,000 titles are free” (Colao 2012).In such a burgeoning environment of technological progress in publishing I am tempted to say that yes, the time of the hyperlinked e-novel has come, and to even predict that HM will be a big part of this new wave of postmodern literature. The hyperlinked HM e-novel’s strategy invites the reader to reflect on the legitimacy and illegitimacy of different forms of narrative, possibly concluding, thanks to ironic electronic footnoting, that not all the novel’s characters and their commentary are to be trusted. Perhaps my HM e-novel will, with its untrustworthy Mrs Poulter and its little-known history of the Aboriginal Tent Embassy addressed by gap-filling hyperlinks, establish a legitimising narrative for a people who have traditionally in white Australian society been deemed the Other and illegitimate. Perhaps The Bullroarers will someday alter attitudes of non-Indigenous Australians to the history and political activities of this country’s first peoples, to the point even, that as Nunning warns, we witness a change in the “hegemonic discourse of history” (353). If that happens we must be thankful for our Internet-enabled information age and its concomitant possibilities for hyperlinked e-publications, for technology may be separated from the world of art, but it can nevertheless be effectively used to recreate, enhance and access that world, to the extent texts previously considered illegitimate achieve authenticity and veracity.ReferencesBanks, Glenda. A Respectable Married Woman. Melbourne: Lacuna, 2012.Banks, Glenda, and Martin Andrew. “Populating a Historical Novel: A Case Study of a Practice-led Research Approach to Historiographic Metafiction.” Bukker Tillibul 7 (2013). 19 Sep. 2014 ‹http://bukkertillibul.net/Text.html?VOL=7&INDEX=2›.Barthes, Roland. Image, Music, Text. Trans. Stephen Heath. London: Fontana Press, 1977.Booth, Wayne C. A Rhetoric of Irony. Chicago: U of Chicago P, 1974.Colao, J.J. “Apple’s Biggest (Unknown) Supplier of E-books.” Forbes 7 June 2012. 19 Sep. 2014 ‹http://www.forbes.com/sites/jjcolao/2012/06/07/apples-biggest-unknown-supplier-of-e-books/›.Coker, Mark. “Q & A with Smashwords Founder, Mark Coker.” About Smashwords 2013. 19 Sep. 2014 ‹https://www.smashwords.com/about›.Eco, Umberto. The Name of the Rose. Trans. William Weaver, San Diego: Harcourt, 1983.Forrest Gump. Dir. Robert Zemeckis. Paramount Pictures, 1994.Fraser, George MacDonald. The Flashman Papers. Various publishers, 1969-2005.Groom, Winston. Forrest Gump. NY: Doubleday, 1986.Gregory, Philippa. The Other Boleyn Girl. UK: Scribner, 2001.Hutcheon, Linda. A Poetics of Postmodernism: History, Theory, Fiction, 2nd ed. Abingdon, UK: Taylor and Francis, 1988.---. “Intertextuality, Parody, and the Discourses of History: A Poetics of Postmodernism History, Theory, Fiction.” 1988. 19 Sep. 2014 ‹http://ieas.unideb.hu/admin/file_3553.pdf›.---. “Historiographic Metafiction: Parody and the Intertextuality of History.” Eds. P. O’Donnell and R.C. Davis, Intertextuality and Contemporary American Fiction. Baltimore, Maryland: John Hopkins UP, 1989. 3-32.---. “Historiographic Metafiction.” Ed. Michael McKeon, Theory of the Novel: A Historical Approach Baltimore, Maryland: Johns Hopkins UP, 2000. 830-50.Nunning, Ansgar. “Where Historiographic Metafiction and Narratology Meet.” Style 38.3 (2004): 352-75.Rushdie, Salman. Midnight’s Children. London: Jonathan Cape, 1980.Starrs, D. Bruno. That Blackfella Bloodsucka Dance! Saarbrücken, Germany: Just Fiction Edition (paperback), 2011; Starrs via Smashwords (e-book), 2012.---. “Writing Indigenous Vampires: Aboriginal Gothic or Aboriginal Fantastic?” M/C Journal 17.4 (2014). 19 Sep. 2014 ‹http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/834›.Tuhiwai Smith, Linda. Decolonizing Methodologies. London & New York: Zed Books, 2012.University of Sussex. “Philippa Gregory Fills the Historical Gaps.” University of Sussex Alumni Magazine 51 (2012). 19 Sep. 2014 ‹http://www.scribd.com/doc/136033913/University-of-Sussex-Alumni-Magazine-Falmer-issue-51›.Wikipedia. “A Current Affair.” 2014. 19 Sep. 2014 ‹http://en.wikipedia.org/wiki/A_Current_Affair›.---. “Aboriginal Tent Embassy.” 2014. 19 Sep. 2014 ‹http://en.wikipedia.org/wiki/Aboriginal_Tent_Embassy›.---. “Department of Families, Housing, Community Services and Indigenous Affairs.” 2014. 19 Sep. 2014 ‹http://en.wikipedia.org/wiki/Department_of_Families,_Housing,_Community_Services_and_Indigenous_Affairs›.---. “Eddie Mabo.” 2014. 19 Sep. 2014 ‹http://en.wikipedia.org/wiki/Eddie_Mabo›.---. “History of Australia (1788 – 1850).” 2014. 19 Sep. 2014 ‹http://en.wikipedia.org/wiki/History_of_Australia_(1788%E2%80%931850)#Aboriginal_resistance›.---. “Terra Nullius.” 2014. 19 Sep. 2014 ‹http://en.wikipedia.org/wiki/Terra_nullius›.

Contemporary culinary discourse in Australia has been dominated by the notion that migration and the increased mobility of Australians is responsible for filling a culinary void, as though, because we have had no peasantry we have no affinity with either the land or its produce. This argument serves to alienate Australians of British descent and its validity is open to questioning. It's an argument in urgent need of debate because cuisine stands out as the signifier of a 'multicultural' nation. Despite all the political posturing, food has 'long been the acceptable face of multiculturalism' (Gunew 13). We argue that the rhetoric of multiculturalism serves to widen the chasm between Australians of British descent and other migrants by encouraging the 'us' and 'them' mentality. We have examined the common links in the food stories of three women from disparate backgrounds. The sample is small in quantitative terms but we felt that if the culinary histories of just three women ran counter to the dominant discourse, then they would provide a new point of departure. In doing this we hope to question the precept driving culinary discourse which gives more weight to what men have said and done, than what women have cooked and how; and propagates mythologies about the eating habits of 'ethnic' migrants. Multiculturalism The terminology surrounding policies that seek to manage difference and diversity is culturally loaded and tends to perpetuate binaries. "Multiculturalism, circulates in Australia as a series of discursive formations serving a variety of institutional interests" (Gunew 256). In Australia multicultural policy seeks to "manage our cultural diversity so that the social cohesion of our nation is preserved" (Advisory Council on Multicultural Affairs 4). The result is to allow diversity that is sanctioned and is to some extent homogenised, while difference is not understood and is contained (see Newman). Multicultural? Who does it include and exclude? Gunew points out that official formulations of multiculturalism exclude people of 'Anglo-Celtic' origin, as though they had no 'ethnicity'. Multiculturalism, while addressing some of the social problems of immigration, is propelled at government level by our need for national cultural policy (see Stratton and Ang). To have a national cultural policy you need, it would seem, a film industry, a music industry, and a cuisine. In his history of Australian cuisine, Symons has only briefly alluded to women's role in the development of Australia's 'industrial cuisine'. One Continuous Picnic presents an essentially masculinist history, a pessimistic derogatory view giving little value to domestic traditions passed from mother to daughter. Women are mentioned only as authors of cookbooks produced throughout the 19th century and as the housewives whose role in the 1950s changed due to the introduction of labour-saving devices. Scant reference is made to the pre-eminent icon of Australian rural culinary history, the Country Women's Association1 and their recipe books. These books have gone through numerous editions from the 1920s, but Symons refers to them dismissively as a 'plain text' arising from the 'store-shelf of processed ingredients' (Symons 201). What of the 'vegie' patch, the afternoon tea? These traditions are mentioned, but only in passing. The products of arduous and loving baking are belittled as 'pretty things'. Is this because they are too difficult to document or because they are women's business? Female writers Barbara Santich and Marion Halligan have both written on the importance of these traditions in the lives of Australian women. Symons's discourse concentrates on 'industrial cuisine', but who is to say that its imperatives were not transgressed. The available data derives from recipe books, sales figures and advertising, but we don't actually know how much food came from other sources. Did your grandmother keep chickens? Did your grandfather fish? Terra Australis Culinae Nullius2 Michael Symons's precept is: This is the only continent which has not supported an agrarian society ... . Our land missed that fertile period when agriculture and cooking were created. There has never been the creative interplay between society and the soil. Almost no food has ever been grown by the person who eats it, almost no food has been preserved in the home and indeed, very little preparation is now done by a family cook. This is the uncultivated continent. Our history is without peasants. (10, our emphasis) This notion of terra Australis culinae nullius is problematic on two levels. The use of the word indigenous implies both Aboriginal and British settler culinary tradition. This statement consequently denies both traditional Aboriginal knowledge and the British traditions. The importance of Aboriginal foodways, their modern exploitation and their impact on the future of Australian cuisine needs recognition, but the complexity of the issue places it beyond the bounds of this paper. Symons's view of peasantry is a romanticised one, and says less about food and more about nostalgia for a more permanent, less changing environment. Advertising of 'ethnic' food routinely exploits this nostalgia by appropriating the image of the cheerful peasant. These advertisements perpetuate the mythologies that link pastoral images with 'family values'. These myths, or what Barthes describes as 'cultural truths', hold that migrant families all have harmonious relationships, are benevolently patriarchal and they all sit down to eat together. 'Ethnic' families are at one with the land and use recipes made from fresher, more natural produce, that are handed down through the female line and have had the benefit of generations of culinary wisdom. (See Gallegos & Mansfield.) So are the culinary traditions of Australians of British descent so different from those of migrant families? Joan, born near her home in Cunderdin in the Western Australian wheatbelt, grew up on a farm in reasonably prosperous circumstances with her six siblings. After marrying, she remained in the Cunderdin area to continue farming. Giovanna was born in 1915 on a farm four kilometres outside Vasto, in the Italian region of Abruzzi. One of seven children, her father died when she was young and at the age of twenty, she came to Australia to marry a Vastese man 12 years her senior. Maria was born in Madeira in 1946, in a coastal village near the capital Funchal. Like Giovanna she is the fifth of seven children and arrived in Australia at the age of twenty to marry. We used the information elicited from these three women to scrutinise some of the mythology surrounding ethnic families. Myth 1: 'Ethnic' families all eat together. All three women said their families had eaten together in the past and it was Joan who commented that what was missing in Australia today was people sitting down together to share a meal. Joan's farming community all came in for an extended midday meal from necessity, as the horses needed to be rested. Both women described radio, television, increasing work hours and different shifts as responsible for the demise of the family meal. Commensality is one of the common boundary markers for all groups 'indicating a kind of equality, peership, and the promise of further kinship links stemming from the intimate acts of dining together' (Nash 11). It is not only migrant families who eat together, and the demise of the family meal is more widely felt. Myth 2: Recipes in 'ethnic' families are passed down from generation to generation. Handing recipes down from generation to generation is not limited to just 'ethnic' families. All three women describe learning to cook from their mothers. Giovanna and Maria had hands-on experiences at very young ages, cooking for the family out of necessity. Joan did not have to cook for her family but her mother still taught her basic cookery as well as the finer points. The fluidity of the mother-daughter identity is expressed and documented by the handing on of recipes. Joan's community thought the recipes important enough to document in a written form, and so the West Australian version of the CWA cookbook became a reality. Joan, when asked about why the CWA developed a cookbook, replied that they wanted to record the recipes that were all well tried by women who spent the bulk of their days in the kitchen, cooking. Being taught to cook, teaching your children to cook and passing on recipes crosses borders, and does not serve to create or maintain boundaries. Myth 3: 'Ethnic' food is never prepared from processed products but always from homegrown produce. During their childhoods the range of food items purchased by the families was remarkably similar for all three women. All described buying tinned fish, rice and sugar, while the range of items produced from what was grown reflected common practices for the use and preservation of fresh produce. The major difference was the items that were in abundance, so while Joan describes pickling meat in addition to preserving fruits, Maria talks about preserving fish and Giovanna vegetables. The traditions developed around what was available. Joan and her family grew the food that they ate, preserved the food in their own home, and the family cook did all the preparation. To suggest they did not have a creative interplay with the soil is suggesting that they were unskilled in making a harsh landscape profitable. Joan's family could afford to buy more food items than the other families. Given the choice both Giovanna's and Maria's families would have only been too eager to make their lives easier. For example, on special occasions when the choice was available Giovanna's family chose store-bought pasta. The perception of the freshness and tastiness of peasant cuisine and affinity with the land obscures the issue, which for much of the world is still quantity, not quality. It would seem that these women's stories have points of reference. All three women describe the sense of community food engendered. They all remember sharing and swapping recipes. This sense of community was expressed by the sharing of food -- regardless of how little there was or what it was. The legacy lives on, while no longer feeling obliged to provide an elaborate afternoon tea as she did in her married life, visitors to Joan's home arrive to the smell of freshly baked biscuits shared over a cup of tea or coffee. Giovanna is only too eager to share her Vastese cakes with a cup of espresso coffee, and as new acquaintances we are obliged to taste each of the five different varieties of cakes and take some home. Maria, on the other hand, offered instant coffee and store-bought biscuits; having worked outside the home all her life and being thirty years younger than the other women, is this perhaps the face of modernity? The widespread anticipation of the divisions between these women has more to do with power relationships and the politics of east, west, north, south than with the realities of everyday life. The development of a style of eating will depend on your knowledge both as an individual and as a collective, the ingredients that are available at any one time, the conditions under which food has to be grown, and your own history. For the newly-arrived Southern Europeans meat was consumed in higher quantities because its availability was restricted in their countries of origin, to eat meat regularly was to increase your status in society. Interest in 'ethnic' food and its hybridisation is a global phenomenon and the creolisation of eating has been described both in America (see Garbaccia) and in Britain (James 81). The current obsession with the 'ethnic' has more to do with nostalgia than tolerance. The interviews which were conducted highlight the similarities between three women from different backgrounds despite differences in age and socioeconomic status. Our cuisine is in the process of hybridisation, but let us not forget who is manipulating this process and the agendas under which it is encouraged. To lay claim that one tradition is wonderful, while the other either does not exist or has nothing to offer, perpetuates divisive binaries. By focussing on what these women have in common rather than their differences we begin to critically interrogate the "culinary binary". It is our intention to stimulate debate that we hope will eventually lead to the encouragement of difference rather than the futile pursuit of authenticity. Footnotes 1. The Country Women's Association is an organisation that began in Australia in the 1920s. It is still operational and has as one of its primary aims the improvement of the welfare and conditions of women and children, especially those living in the country. 2. The term terra australis nullius is used to describe Australia at the point of colonisation. The continent was regarded as "empty" because the native people had neither improved nor settled on the land. We have extended this concept to incorporate cuisine. This notion of emptiness has influenced readings of Australian history which overlook the indigenous population and their relationship with the land. References Advisory Council on Multicultural Affairs. Towards A National Agenda for a Multicultural Australia. Canberra, 1988. Barthes, Roland. Mythologies. Trans. A. Lavers. London: Vintage, 1993. Belasco, Warren. "Ethnic Fast Foods: The Corporate Melting Pot". Food and Foodways 2.1 (1987): 1-30. Gallegos, Danielle, and Alan Mansfield. "Eclectic Gastronomes or Conservative Eaters: What Does Advertising Say?" Nutrition Unplugged, Proceedings of the 16th Dietitians Association of Australia National Conference. Hobart: Dietitians Association of Australia, 1997. Gallegos, Danielle, and Alan Mansfield. "Screen Cuisine: The Pastes, Powders and Potions of the Mediterranean Diet". Celebrate Food, Proceedings of the 17th Dietitians Association of Australia National Conference. Sydney: Dietitians Association of Australia, 1998. Garbaccia, D.R. We Are What We Eat: Ethnic Food and the Making of Americans. Boston: Harvard UP, 1998. Gunew, Sneja. "Denaturalising Cultural Nationalisms; Multicultural Readings of 'Australia'." Nation and Narration. Ed. Homi Bhabha. London: Routledge, 1990. 245-66. Gunew, Sneja. Introduction. Feminism and the Politics of Difference. Eds. S. Gunew and A. Yeatman. Sydney: Allen and Unwin, 1993. xiii-xxv. Halligan, Marion. Eat My Words. Melbourne: Angus & Robertson, 1990. Harvey, D. The Condition of Postmodernity. Oxford: Basil Blackwell, 1989. James, Alison. "How British Is British Food". Food, Health and Identity. Ed. P. Caplan. London: Routledge, 1997. 71-86. Mennell, Stephen. All Manners of Food: Eating and Taste in England and France from the Middle Ages to the Present. Oxford: Basil Blackwell, 1996. Nash, Manning. The Cauldron of Ethnicity in the Modern World. Chicago: U of Chicago P, 1989. Newman, Felicity. Didn't Your Mother Teach You Not to Talk with Your Mouth Full? Food, Families and Friction. Unpublished Masters Thesis, Murdoch University, Perth, Western Australia, 1997. Santich, Barbara. Looking for Flavour. Adelaide: Wakefield, 1996. Stratton, Jon, and Ien Ang. "Multicultural Imagined Communities: Cultural Difference and National Identity in Australia and the USA". Continuum 8.2 (1994): 124-58. Symons, Michael. One Continuous Picnic. Adelaide: Duck, 1992. Citation reference for this article MLA style: Danielle Gallegos, Felicity Newman. "What about the Women? Food, Migration and Mythology." M/C: A Journal of Media and Culture 2.7 (1999). [your date of access] <http://www.uq.edu.au/mc/9910/women.php>. Chicago style: Danielle Gallegos, Felicity Newman, "What about the Women? Food, Migration and Mythology," M/C: A Journal of Media and Culture 2, no. 7 (1999), <http://www.uq.edu.au/mc/9910/women.php> ([your date of access]). APA style: Danielle Gallegos, Felicity Newman. (1999) What about the women? Food, migration and mythology. M/C: A Journal of Media and Culture 2(7). <http://www.uq.edu.au/mc/9910/women.php> ([your date of access]).

Introduction I think the Privacy Act is a huge edifice to protect the minority of things that could go wrong. I’ve got a good example for you, I’m just trying to think … yeah the worst one I’ve ever seen was the Balga Youth Program where we took these students on a reward excursion all the way to Fremantle and suddenly this very alienated kid started to jump under a bus, a moving bus so the kid had to be restrained. The cops from Fremantle arrived because all the very good people in Fremantle were alarmed at these grown-ups manhandling a kid and what had happened is that DCD [Department of Community Development] had dropped him into the program but hadn’t told us that this kid had suicide tendencies. No, it’s just chronically bad. And there were caseworkers involved and … there is some information that we have to have that doesn’t get handed down. Rather than a blanket rule that everything’s confidential coming from them to us, and that was a real live situation, and you imagine how we’re trying to handle it, we had taxis going from Balga to Fremantle to get staff involved and we only had to know what to watch out for and we probably could have … well what you would have done is not gone on the excursion I suppose (School Principal, quoted in Balnaves and Luca 49). These comments are from a school principal in Perth, Western Australia in a school that is concerned with “at-risk” students, and in a context where the Commonwealth Privacy Act 1988 has imposed limitations on their work. Under this Act it is illegal to pass health, personal or sensitive information concerning an individual on to other people. In the story cited above the Department of Community Development personnel were apparently protecting the student’s “negative right”, that is, “freedom from” interference by others. On the other hand, the principal’s assertion that such information should be shared is potentially a “positive right” because it could cause something to be done in that person’s or society’s interests. Balnaves and Luca noted that positive and negative rights have complex philosophical underpinnings, and they inform much of how we operate in everyday life and of the dilemmas that arise (49). For example, a ban on euthanasia or the “assisted suicide” of a terminally ill person can be a “positive right” because it is considered to be in the best interests of society in general. However, physicians who tacitly approve a patient’s right to end their lives with a lethal dose by legally prescribed dose of medication could be perceived as protecting the patient’s “negative right” as a “freedom from” interference by others. While acknowledging the merits of collaboration between people who are working to improve the wellbeing of students “at-risk”, this paper examines some of the barriers to collaboration. Based on both primary and secondary sources, and particularly on oral testimonies, the paper highlights the tension between privacy as a negative right and collaborative helping as a positive right. It also points to other difficulties and dilemmas within and between the institutions engaged in this joint undertaking. The authors acknowledge Michel Foucault’s contention that discourse is power. The discourse on privacy and the sharing of information in modern societies suggests that privacy is a negative right that gives freedom from bureaucratic interference and protects the individual. However, arguably, collaboration between agencies that are working to support individuals “at-risk” requires a measured relaxation of the requirements of this negative right. Children and young people “at-risk” are a case in point. Towards Collaboration From a series of interviews conducted in 2004, the school authorities at Balga Senior High School and Midvale Primary School, people working for the Western Australian departments of Community Development, Justice, and Education and Training in Western Australia, and academics at the Edith Cowan and Curtin universities, who are working to improve the wellbeing of students “at-risk” as part of an Australian Research Council (ARC) project called Smart Communities, have identified students “at-risk” as individuals who have behavioural problems and little motivation, who are alienated and possibly violent or angry, who under-perform in the classroom and have begun to truant. They noted also that students “at-risk” often suffer from poor health, lack of food and medication, are victims of unwanted pregnancies, and are engaged in antisocial and illegal behaviour such as stealing cars and substance abuse. These students are also often subject to domestic violence (parents on drugs or alcohol), family separation, and homelessness. Some are depressed or suicidal. Sometimes cultural factors contribute to students being regarded as “at-risk”. For example, a social worker in the Smart Communities project stated: Cultural factors sometimes come into that as well … like with some Muslim families … they can flog their daughter or their son, usually the daughter … so cultural factors can create a risk. Research elsewhere has revealed that those children between the ages of 11-17 who have been subjected to bullying at school or physical or sexual abuse at home and who have threatened and/or harmed another person or suicidal are “high-risk” youths (Farmer 4). In an attempt to bring about a positive change in these alienated or “at-risk” adolescents, Balga Senior High School has developed several programs such as the Youth Parents Program, Swan Nyunger Sports Education program, Intensive English Centre, and lower secondary mainstream program. The Midvale Primary School has provided services such as counsellors, Aboriginal child protection workers, and Aboriginal police liaison officers for these “at-risk” students. On the other hand, the Department of Community Development (DCD) has provided services to parents and caregivers for children up to 18 years. Academics from Edith Cowan and Curtin universities are engaged in gathering the life stories of these “at-risk” students. One aspect of this research entails the students writing their life stories in a secured web portal that the universities have developed. The researchers believe that by engaging the students in these self-exploration activities, they (the students) would develop a more hopeful outlook on life. Though all agencies and educational institutions involved in this collaborative project are working for the well-being of the children “at-risk”, the Privacy Act forbids the authorities from sharing information about them. A school psychologist expressed concern over the Privacy Act: When the Juvenile Justice Department want to reintroduce a student into a school, we can’t find out anything about this student so we can’t do any preplanning. They want to give the student a fresh start, so there’s always that tension … eventually everyone overcomes [this] because you realise that the student has to come to the school and has to be engaged. Of course, the manner and consequences of a student’s engagement in school cannot be predicted. In the scenario described above students may have been given a fair chance to reform themselves, which is their positive right but if they turn out to be at “high risk” it would appear that the Juvenile Department protected the negative right of the students by supporting “freedom from” interference by others. Likewise, a school health nurse in the project considered confidentiality or the Privacy Act an important factor in the security of the student “at-risk”: I was trying to think about this kid who’s one of the children who has been sexually abused, who’s a client of DCD, and I guess if police got involved there and wanted to know details and DCD didn’t want to give that information out then I’d guess I’d say to the police “Well no, you’ll have to talk to the parents about getting further information.” I guess that way, recognising these students are minor and that they are very vulnerable, their information … where it’s going, where is it leading? Who wants to know? Where will it be stored? What will be the outcomes in the future for this kid? As a 14 year old, if they’re reckless and get into things, you know, do they get a black record against them by the time they’re 19? What will that information be used for if it’s disclosed? So I guess I become an advocate for the student in that way? Thus the nurse considers a sexually abused child should not be identified. It is a positive right in the interest of the person. Once again, though, if the student turns out to be at “high risk” or suicidal, then it would appear that the nurse was protecting the youth’s negative right—“freedom from” interference by others. Since collaboration is a positive right and aims at the students’ welfare, the workable solution to prevent the students from suicide would be to develop inter-agency trust and to share vital information about “high-risk” students. Dilemmas of Collaboration Some recent cases of the deaths of young non-Caucasian girls in Western countries, either because of the implications of the Privacy Act or due to a lack of efficient and effective communication and coordination amongst agencies, have raised debates on effective child protection. For example, the British Laming report (2003) found that Victoria Climbié, a young African girl, was sent by her parents to her aunt in Britain in order to obtain a good education and was murdered by her aunt and aunt’s boyfriend. However, the risk that she could be harmed was widely known. The girl’s problems were known to 6 local authorities, 3 housing authorities, 4 social services, 2 child protection teams, and the police, the local church, and the hospital, but not to the education authorities. According to the Laming Report, her death could have been prevented if there had been inter-agency sharing of information and appropriate evaluation (Balnaves and Luca 49). The agencies had supported the negative rights of the young girl’s “freedom from” interference by others, but at the cost of her life. Perhaps Victoria’s racial background may have contributed to the concealment of information and added to her disadvantaged position. Similarly, in Western Australia, the Gordon Inquiry into the death of Susan Taylor, a 15 year old girl Aboriginal girl at the Swan Nyungah Community, found that in her short life this girl had encountered sexual violation, violence, and the ravages of alcohol and substance abuse. The Gordon Inquiry reported: Although up to thirteen different agencies were involved in providing services to Susan Taylor and her family, the D[epartment] of C[ommunity] D[evelopment] stated they were unaware of “all the services being provided by each agency” and there was a lack of clarity as to a “lead coordinating agency” (Gordon et al. quoted in Scott 45). In this case too, multiple factors—domestic, racial, and the Privacy Act—may have led to Susan Taylor’s tragic end. In the United Kingdom, Harry Ferguson noted that when a child is reported to be “at-risk” from domestic incidents, they can suffer further harm because of their family’s concealment (204). Ferguson’s study showed that in 11 per cent of the 319 case sample, children were known to be re-harmed within a year of initial referral. Sometimes, the parents apply a veil of secrecy around themselves and their children by resisting or avoiding services. In such cases the collaborative efforts of the agencies and education may be thwarted. Lack of cultural education among teachers, youth workers, and agencies could also put the “at-risk” cultural minorities into a high risk category. For example, an “at-risk” Muslim student may not be willing to share personal experiences with the school or agencies because of religious sensitivities. This happened in the UK when Khadji Rouf was abused by her father, a Bangladeshi. Rouf’s mother, a white woman, and her female cousin from Bangladesh, both supported Rouf when she finally disclosed that she had been sexually abused for over eight years. After group therapy, Rouf stated that she was able to accept her identity and to call herself proudly “mixed race”, whereas she rejected the Asian part of herself because it represented her father. Other Asian girls and young women in this study reported that they could not disclose their abuse to white teachers or social workers because of the feeling that they would be “letting down their race or their Muslim culture” (Rouf 113). The marginalisation of many Muslim Australians both in the job market and in society is long standing. For example, in 1996 and again in 2001 the Muslim unemployment rate was three times higher than the national total (Australian Bureau of Statistics). But since the 9/11 tragedy and Bali bombings visible Muslims, such as women wearing hijabs (headscarves), have sometimes been verbally and physically abused and called ‘terrorists’ by some members of the wider community (Dreher 13). The Howard government’s new anti-terrorism legislation and the surveillance hotline ‘Be alert not alarmed’ has further marginalised some Muslims. Some politicians have also linked Muslim asylum seekers with terrorists (Kabir 303), which inevitably has led Muslim “at-risk” refugee students to withdraw from school support such as counselling. Under these circumstances, Muslim “at-risk” students and their parents may prefer to maintain a low profile rather than engage with agencies. In this case, arguably, federal government politics have exacerbated the barriers to collaboration. It appears that unfamiliarity with Muslim culture is not confined to mainstream Australians. For example, an Aboriginal liaison police officer engaged in the Smart Communities project in Western Australia had this to say about Muslim youths “at-risk”: Different laws and stuff from different countries and they’re coming in and sort of thinking that they can bring their own laws and religions and stuff … and when I say religions there’s laws within their religions as well that they don’t seem to understand that with Australia and our laws. Such generalised misperceptions of Muslim youths “at-risk” would further alienate them, thus causing a major hindrance to collaboration. The “at-risk” factors associated with Aboriginal youths have historical connections. Research findings have revealed that indigenous youths aged between 10-16 years constitute a vast majority in all Australian States’ juvenile detention centres. This over-representation is widely recognised as associated with the nature of European colonisation, and is inter-related with poverty, marginalisation and racial discrimination (Watson et al. 404). Like the Muslims, their unemployment rate was three times higher than the national total in 2001 (ABS). However, in 1998 it was estimated that suicide rates among Indigenous peoples were at least 40 per cent higher than national average (National Advisory Council for Youth Suicide Prevention, quoted in Elliot-Farrelly 2). Although the wider community’s unemployment rate is much lower than the Aboriginals and the Muslims, the “at-risk” factors of mainstream Australian youths are often associated with dysfunctional families, high conflict, low-cohesive families, high levels of harsh parental discipline, high levels of victimisation by peers, and high behavioural inhibition (Watson et al. 404). The Macquarie Fields riots in 2005 revealed the existence of “White” underclass and “at-risk” people in Sydney. Macquarie Fields’ unemployment rate was more than twice the national average. Children growing up in this suburb are at greater risk of being involved in crime (The Age). Thus small pockets of mainstream underclass youngsters also require collaborative attention. In Western Australia people working on the Smart Communities project identified that lack of resources can be a hindrance to collaboration for all sectors. As one social worker commented: “government agencies are hierarchical systems and lack resources”. They went on to say that in their department they can not give “at-risk” youngsters financial assistance in times of crisis: We had a petty cash box which has got about 40 bucks in it and sometimes in an emergency we might give a customer a couple of dollars but that’s all we can do, we can’t give them any larger amount. We have bus/metro rail passes, that’s the only thing that we’ve actually got. A youth worker in Smart Communities commented that a lot of uncertainty is involved with young people “at-risk”. They said that there are only a few paid workers in their field who are supported and assisted by “a pool of volunteers”. Because the latter give their time voluntarily they are under no obligation to be constant in their attendance, so the number of available helpers can easily fluctuate. Another youth worker identified a particularly important barrier to collaboration: because of workers’ relatively low remuneration and high levels of work stress, the turnover rates are high. The consequence of this is as follows: The other barrier from my point is that you’re talking to somebody about a student “at-risk”, and within 14 months or 18 months a new person comes in [to that position] then you’ve got to start again. This way you miss a lot of information [which could be beneficial for the youth]. Conclusion The Privacy Act creates a dilemma in that it can be either beneficial or counter-productive for a student’s security. To be blunt, a youth who has suicided might have had their privacy protected, but not their life. Lack of funding can also be a constraint on collaboration by undermining stability and autonomy in the workforce, and blocking inter-agency initiatives. Lack of awareness about cultural differences can also affect unity of action. The deepening inequality between the “haves” and “have-nots” in the Australian society, and the Howard government’s harshness on national security issues, can also pose barriers to collaboration on youth issues. Despite these exigencies and dilemmas, it would seem that collaboration is “the only game” when it comes to helping students “at-risk”. To enhance this collaboration, there needs to be a sensible modification of legal restrictions to information sharing, an increase in government funding and support for inter-agency cooperation and informal information sharing, and an increased awareness about the cultural needs of minority groups and knowledge of the mainstream underclass. Acknowledgments The research is part of a major Australian Research Council (ARC) funded project, Smart Communities. The authors very gratefully acknowledge the contribution of the interviewees, and thank *Donald E. Scott for conducting the interviews. References Australian Bureau of Statistics. 1996 and 2001. Balnaves, Mark, and Joe Luca. “The Impact of Digital Persona on the Future of Learning: A Case Study on Digital Repositories and the Sharing of Information about Children At-Risk in Western Australia”, paper presented at Ascilite, Brisbane (2005): 49-56. 10 April 2006. http://www.ascilite.org.au/conferences/brisbane05/blogs/proceedings/ 06_Balnaves.pdf>. Dreher, Tanya. ‘Targeted’: Experiences of Racism in NSW after September 11, 2001. Sydney: University of Technology, 2005. Elliot-Farrelly, Terri. “Australian Aboriginal Suicide: The Need for an Aboriginal Suicidology”? Australian e-Journal for the Advancement of Mental Health, 3.3 (2004): 1-8. 15 April 2006 http://www.auseinet.com/journal/vol3iss3/elliottfarrelly.pdf>. Farmer, James. A. High-Risk Teenagers: Real Cases and Interception Strategies with Resistant Adolescents. Springfield, Ill.: C.C. Thomas, 1990. Ferguson, Harry. Protecting Children in Time: Child Abuse, Child Protection and the Consequences of Modernity. London: Palgrave Macmillan, 2004. Foucault, Michel. Power/Knowledge: Selected Interviews and Other Writings, 1972-1977. Ed. Colin Gordon, trans. Colin Gordon et al. New York: Pantheon, 1980. Kabir, Nahid. Muslims in Australia: Immigration, Race Relations and Cultural History. London: Kegan Paul, 2005. Rouf, Khadji. “Myself in Echoes. My Voice in Song.” Ed. A. Bannister, et al. Listening to Children. London: Longman, 1990. Scott E. Donald. “Exploring Communication Patterns within and across a School and Associated Agencies to Increase the Effectiveness of Service to At-Risk Individuals.” MS Thesis, Curtin University of Technology, August 2005. The Age. “Investing in People Means Investing in the Future.” The Age 5 March, 2005. 15 April 2006 http://www.theage.com.au>. Watson, Malcolm, et al. “Pathways to Aggression in Children and Adolescents.” Harvard Educational Review, 74.4 (Winter 2004): 404-428. Citation reference for this article MLA Style Kabir, Nahid, and Mark Balnaves. "Students “at Risk”: Dilemmas of Collaboration." M/C Journal 9.2 (2006). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0605/04-kabirbalnaves.php>. APA Style Kabir, N., and M. Balnaves. (May 2006) "Students “at Risk”: Dilemmas of Collaboration," M/C Journal, 9(2). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0605/04-kabirbalnaves.php>.

BackgroundWhile Aboriginal Australians are known to be disproportionately affected by intellectual disabilities (ID) and/or autism spectrum disorders (developmental disabilities), true prevalences among Aboriginal children are unclear, with evidence of delayed and missed diagnoses and barriers to services. This study estimated these prevalences and disability service use among WA Aboriginal children. ApproachTwo cohorts and data sources were used. Firstly, a state-based health and disability data linkage for all WA Aboriginal children born 2000-2013, including hospital, public outpatient mental health, birth and death data and state registries of birth defects, cerebral palsy and ID. The cumulative incidence of diagnosis by age 18 was estimated. Secondly, prevalence of service access was estimated from all National Disability Insurance Scheme (NDIS) WA Aboriginal and non-Aboriginal participants aged 0-17 on 30/6/2021 with a primary diagnosis of ID (with or without fetal alcohol spectrum disorder (FASD)) or autism. Census population counts were denominators. ResultsUsing the data linkage, 3.3% of Aboriginal children born 2000-2013 were diagnosed with developmental disability by 18 years. The most common diagnosis (2.5%) was ID without FASD. Using NDIS data, 3.1% of Aboriginal children were NDIS participants with development disability in 2021, but only 0.7% of children with ID without FASD. Instead, autism was most common diagnosis. Aboriginal children were more likely than non-Aboriginal children to be NDIS participants with autism (prevalence ratio (PR): 1.16, 95% confidence interval (CI): 1.06-1.26), ID without FASD (PR: 2.06, 95% CI: 1.80-2.35) and ID with FASD (PR: 40.5, 95%CI: 29.9-57.1). For both data sources, prevalences differed by region. Aboriginal NDIS participants with ID had an older age distribution than non-Aboriginal participants. ConclusionFor both cohorts, the prevalence of developmental disability was >3%, though the contributions of ID and autism differed in the two data sources. Variation in diagnoses by region and Aboriginal status may indicate differential diagnosis and variation in age suggests delayed diagnoses or access to services for Aboriginal children.

Abstract Background and Objectives The lack of appropriate quality of life (QoL) measures is a major barrier to planning and delivering health and aged care services for older Indigenous peoples worldwide. QoL is dependent on cultural values and priorities may vary between age groups. This project aims to develop a QoL tool for older Aboriginal Australians. Research Design and Methods The study was completed with Aboriginal Australians aged over 45 years living in Perth and Melbourne, Australia. Participatory Action Research methods were applied with an Indigenous research paradigm. Semistructured interviews were undertaken to identify the factors important to having a good life. Factors were further explored in yarning groups with older Aboriginal peoples to develop the draft QoL tool questions. Face validity of the tool was completed in two regions. Results The participants preferred the term “a good life” to QoL. Having a good spirit is at the core of having a good life. The protective factors for a good life were family and friends, health, culture, Elder role, respect, Country, spirituality, services and supports, community, future plans, safety and security, and basic needs. Discussion and Implications Twelve factors were identified and developed into key questions for the Good Spirit, Good Life tool. The draft tool will undergo quantitative validity testing, prior to embedding in service provision to inform care for older Aboriginal peoples. With local adaptation, the tool, accompanying framework, and participatory methods for development may have wider applicability to other Indigenous populations worldwide.

Abstract Background Studies of select populations (e.g. pre-industrial or subsistence farming populations) suggest that children with living maternal grandmothers (MGMs) had improved survival. It is unknown if this holds for child health more generally or in Australian Indigenous communities, where care of children is commonly shared by family members. We examined associations between the health of young Aboriginal Western Australians and their grandparents. Methods Birth, death, inpatient and emergency department records of Aboriginal infants born 2000-2013 in WA and their grandparents were linked. Grandparents were classified as ‘healthy’ (alive with Charlson comorbidity index score of 0 or 1), ‘unhealthy’ (alive with a score of ≥ 2), or dead when the child was born. Results Among the 27,425 children, mortality by age 2 was lower with healthy grandparents (e.g. 11 deaths per 1000 live births with healthy MGMs; 22 with unhealthy; 16 with dead MGMs) and acute healthcare contacts were fewer (e.g. 13% with healthy MGMs spent ≥7 days in hospital by age 2 vs 19% with unhealthy or dead MGMs). However, healthcare contacts were generally unrelated to grandfathers. Outcomes were better for children with 2 living grandmothers (e.g. 1.5% with 2 grandmothers were discharged against medical advice in 2 years; 2.7% with 1 grandmother; 3.7% with none). Conclusions Children with healthy grandmothers had lower mortality and morbidity. These associations are unlikely to be due to genetic or environmental factors, as they are weaker/missing for grandfathers. Key messages Good health among older Aboriginal people may also benefit the health of subsequent generations.

IntroductionOn average, Aboriginal neonates in Western Australia (WA) weigh 200g less than non-Aboriginal infants and are 2-3 times more likely to be preterm, stillborn, or die neonatally. They are also more likely to be exposed in utero to maternal behaviour risks like smoking, due to factors such as intergenerational trauma. Objectives and ApproachWe aimed to estimate the proportion of small for gestational age (SGA) births, preterm births, and perinatal deaths of Western Australian Aboriginal infants from 1998-2010 attributable to maternal smoking, alcohol misuse, drug misuse, and assault against the mother. We used linked birth, hospital, mental health, and death records of all Aboriginal singletons and their parents. Using logistic regression with a generalized estimating equation approach, associations between birth outcomes and the four risk factors of interest were estimated after adjusting for maternal age, height and health. Using coefficients from these models, we estimated adjusted population attributable fractions (PAFs). ResultsOf 28,119 births, 16% of infants were SGA, 13% were preterm and 2% died perinatally. 51% of infants were exposed to maternal smoking, alcohol misuse, drug misuse, and/or assault, and 37% [95% CI: 35%, 40%] of SGA births, 16% [95% CI: 14%, 19%] of preterm births and 20% [95% CI: 12%, 28%] of perinatal deaths were attributable to these factors, predominantly smoking. The PAFs for alcohol misuse (for example, for SGA, 3% [95% CI: 2%, 3%]) are likely to be underestimates as it is difficult to identify alcohol misuse using administrative data. Conclusion/ImplicationsWhile smoking rates have dropped considerably, reduction measures have been less successful among Aboriginal women than non-Aboriginal women. Significant improvements in perinatal health are possible with identification and support of effective risk reduction approaches for Aboriginal women, as well as their communities and families.

Abstract Background Midwives are well placed to promote vaccination awareness throughout a women’s pregnancy and strengthen childhood vaccination demand following hospital discharge. In Perth, Western Australia, Aboriginal children experience some of the lowest vaccination coverage rates across the nation. To identify factors preventing greater vaccination uptake amongst the target population, a theory-based study was conducted with midwives across two Perth maternity hospitals to explore behavioural attributes, knowledge, attitudes and beliefs surrounding vaccination provision and the vaccines administered to Aboriginal children. Methods A purpose-designed questionnaire was distributed to midwives working in two Perth public maternity hospitals. The proximal constructs of The Theory of Planned Behavior were used to frame the questionnaire to enable the barriers to greater vaccination coverage to be identified and behaviourally situated. Descriptive statistics described the demographics of the study sample. Chi-square and the Fisher’s exact test were used to identify associations between midwife characteristics and awareness of the coverage rates. Significance was set at α = 0.05. Results Of the 58 midwives who completed the study questionnaire, 77.2% were unaware of the sub-optimal vaccination coverage in Perth’s Aboriginal children. Level of education (p = 0.53) and years worked as a practising midwife (p = 0.47) were not found to be associated with an awareness of the coverage rates. Approximately, 50% of midwives reported some concern over the efficacy of childhood vaccines, 44.4% did not feel confident with their knowledge of vaccines, while 33.3% do not routinely discuss childhood vaccinations with parents prior to hospital discharge. Conclusions Key findings in the study identified that a range of educational, leadership and system-based issues are affecting midwives’ capacity to play a more substantial role in influencing vaccination coverage in Perth’s Aboriginal children.

Abstract Background Evidence suggests that Aboriginal babies in Western Australia are not receiving adequate primary health care in their first 3 months of life, leading to questions about enablers and constraints to delivering such care. This paper presents findings from a qualitative research project investigating health providers’ perceptions and experiences of best and current practice in discharge planning, postnatal care and health education for Aboriginal mothers and their newborn babies. Methods Constructivist grounded theory guided this research involving 58 semi-structured interviews conducted with health providers who deliver care to Aboriginal mothers and infants. Participants were recruited from hospital-based and primary health sites in metropolitan Perth, and regional and remote locations in Western Australia. Results Structural factors enabling best practice in discharge planning, postnatal care, and health education for mothers included health providers following best practice guidelines and adequate staffing levels. Organisational enablers included continuity of care throughout pregnancy, birth and postnatally. In particular, good communication between services around discharge planning, birth notifications, and training in culturally respectful care. Structural and organisational constraints to delivering best practice and compromising continuity of care were identified as beyond individual control. These included poor communication between different health and social services, insufficient hospital staffing levels leading to early discharge, inadequate cultural training, delayed receipt of birth notifications and discharge summaries received by Aboriginal primary health services. Conclusion Findings highlight the importance of examining current policies and practices to promote best practice in postnatal care to improve health outcomes for mothers and their Aboriginal babies.

Abstract Introduction In Australia, health-related quality of life (HRQoL) instruments have been adopted in national population surveys to inform policy decisions that affect the health of Aboriginal and Torres Strait Islanders. However, Western-developed HRQoL instruments should not be assumed to capture Indigenous conceptualization of health and well-being. In our study, following recommendations for cultural adaptation, an Indigenous Reference Group indicated the EQ-5D-5L as a potentially valid instrument to measure aspects of HRQoL and endorsed further psychometric evaluation. Thus, this study aimed to investigate the construct validity and reliability of the EQ-5D-5L in an Aboriginal Australian population. Methods The EQ-5D-5L was applied in a sample of 1012 Aboriginal adults. Dimensionality was evaluated using Exploratory Graph Analysis. The Partial Credit Model was employed to evaluate item performance and adequacy of response categories. Area under the receiver operating characteristic curve (AUROC) was used to investigate discriminant validity regarding chronic pain, general health and experiences of discrimination. Results The EQ-5D-5L comprised two dimensions, Physiological and Psychological, and reliability was adequate. Performance at an item level was excellent and the EQ-5D-5L individual items displayed good discriminant validity. Conclusions The EQ-5D-5L is a suitable instrument to measure five specific aspects (Mobility, Self-Care, Usual activities, Pain/Discomfort, Anxiety/Depression) of Aboriginal and Torres Strait Islander HRQoL. A future research agenda comprises the investigation of other domains of Aboriginal and Torres Strait Islander HRQoL and potential expansions to the instrument.

“Human beings are not born once and for all on the day their mothers give birth to them [...] life obliges them over and over again to give birth to themselves.” (Garcia Marquez 165) Introduction The refugee experience is, at heart, one of rebirth. Just as becoming a new, distinctive being—biological birth—necessarily involves the physical separation of mother and infant, so becoming a refugee entails separation from a "mother country." This mother country may or may not be a recognised nation state; the point is that the refugee transitions from physical connectedness to separation, from insider to outsider, from endemic to alien. Like babies, refugees may have little control over the timing and conditions of their expulsion. Successful resettlement requires not one rebirth but multiple rebirths—resettlement is a lifelong process (Layton)—which in turn require hope, imagination, and energy. In rebirthing themselves over and over again, people who have fled or been forced from their homelands become both mother and child. They do not go through this rebirthing alone. A range of agencies and individuals may be there to assist, including immigration officials, settlement services, schools and teachers, employment agencies and employers, English as a Second Language (ESL) resources and instructors, health-care providers, counsellors, diasporic networks, neighbours, church groups, and other community organisations. The nature, intensity, and duration of these “midwives’” interventions—and when they occur and in what combinations—vary hugely from place to place and from person to person, but there is clear evidence that post-migration experiences have a significant impact on settlement outcomes (Fozdar and Hartley). This paper draws on qualitative research I did in 2012 in a regional town in New South Wales to illuminate some of the ways in which settlement aides ease, or impede, refugees’ rebirth as fully recognised and participating Australians. I begin by considering what it means to be resilient before tracing some of the dimensions of the resettlement process. In doing so, I draw on data from interviews and focus groups with former refugees, service providers, and other residents of the town I shall call Easthaven. First, though, a word about Easthaven. As is the case in many rural and regional parts of Australia, Easthaven’s population is strongly dominated by Anglo Celtic and Saxon ancestries: 2011 Census data show that more than 80 per cent of residents were born in Australia (compared with a national figure of 69.8 per cent) and about 90 per cent speak only English at home (76.8 per cent). Almost twice as many people identify as Aboriginal or Torres Strait Islander as the national figure of 2.5 per cent (Australian Bureau of Statistics). For several years Easthaven has been an official “Refugee Welcome Zone”, welcoming hundreds of refugees from diverse countries in Africa and the Middle East as well as from Myanmar. This reflects the Department of Immigration and Citizenship’s drive to settle a fifth of Australia’s 13,750 humanitarian entrants a year directly in regional areas. In Easthaven’s schools—which is where I focused my research—almost all of the ESL students are from refugee backgrounds. Defining Resilience Much of the research on human resilience is grounded in psychology, with a capacity to “bounce back” from adverse experiences cited in many definitions of resilience (e.g. American Psychological Association). Bouncing back implies a relatively quick process, and a return to a state or form similar to that which existed before the encounter with adversity. Yet resilience often requires sustained effort and significant changes in identity. As Jerome Rugaruza, a former UNHCR refugee, says of his journey from the Democratic Republic of Congo to Australia: All the steps begin in the burning village: you run with nothing to eat, no clothes. You just go. Then you get to the refugee camp […] You have a little bread and you thank god you are safe. Then after a few years in the camp, you think about a future for your children. You arrive in Australia and then you learn a new language, you learn to drive. There are so many steps and not everyone can do it. (Milsom) Not everyone can do it, but a large majority do. Research by Graeme Hugo, for example, shows that although humanitarian settlers in Australia face substantial barriers to employment and initially have much higher unemployment rates than other immigrants, for most nationality groups this difference has disappeared by the second generation: “This is consistent with the sacrifice (or investment) of the first generation and the efforts extended to attain higher levels of education and English proficiency, thereby reducing the barriers over time.” (Hugo 35). Ingrid Poulson writes that “resilience is not just about bouncing. Bouncing […] is only a reaction. Resilience is about rising—you rise above it, you rise to the occasion, you rise to the challenge. Rising is an active choice” (47; my emphasis) I see resilience as involving mental and physical grit, coupled with creativity, aspiration and, crucially, agency. Dimensions of Resettlement To return to the story of 41-year-old Jerome Rugaruza, as related in a recent newspaper article: He [Mr Rugaruza] describes the experience of being a newly arrived refugee as being like that of a newborn baby. “You need special care; you have to learn to speak [English], eat the different food, create relationships, connections”. (Milsom) This is a key dimension of resettlement: the adult becomes like an infant again, shifting from someone who knows how things work and how to get by to someone who is likely to be, for a while, dependent on others for even the most basic things—communication, food, shelter, clothing, and social contact. The “special care” that most refugee arrivals need initially (and sometimes for a long time) often results in their being seen as deficient—in knowledge, skills, dispositions, and capacities as well as material goods (Keddie; Uptin, Wright and Harwood). As Fozdar and Hartley note: “The tendency to use a deficit model in refugee resettlement devalues people and reinforces the view of the mainstream population that refugees are a liability” (27). Yet unlike newborns, humanitarian settlers come to their new countries with rich social networks and extensive histories of experience and learning—resources that are in fact vital to their rebirth. Sisay (all names are pseudonyms), a year 11 student of Ethiopian heritage who was born in Kenya, told me with feeling: I had a life back in Africa [her emphasis]. It was good. Well, I would go back there if there’s no problems, which—is a fact. And I came here for a better life—yeah, I have a better life, there’s good health care, free school, and good environment and all that. But what’s that without friends? A fellow student, Celine, who came to Australia five years ago from Burundi via Uganda, told me in a focus group: Some teachers are really good but I think some other teachers could be a little bit more encouraging and understanding of what we’ve gone through, because [they] just look at you like “You’re year 11 now, you should know this” […] It’s really discouraging when [the teachers say] in front of the class, “Oh, you shouldn’t do this subject because you haven’t done this this this this” […] It’s like they’re on purpose to tell you “you don’t have what it takes; just give up and do something else.” As Uptin, Wright and Harwood note, “schools not only have the power to position who is included in schooling (in culture and pedagogy) but also have the power to determine whether there is room and appreciation for diversity” (126). Both Sisay and Celine were disheartened by the fact they felt some of their teachers, and many of their peers, had little interest in or understanding of their lives before they came to Australia. The teachers’ low expectations of refugee-background students (Keddie, Uptin, Wright and Harwood) contrasted with the students’ and their families’ high expectations of themselves (Brown, Miller and Mitchell; Harris and Marlowe). When I asked Sisay about her post-school ambitions, she said: “I have a good idea of my future […] write a documentary. And I’m working on it.” Celine’s response was: “I know I’m gonna do medicine, be a doctor.” A third girl, Lily, who came to Australia from Myanmar three years ago, told me she wanted to be an accountant and had studied accounting at the local TAFE last year. Joseph, a father of three who resettled from South Sudan seven years ago, stressed how important getting a job was to successful settlement: [But] you have to get a certificate first to get a job. Even the job of cleaning—when I came here I was told that somebody has to go to have training in cleaning, to use the different chemicals to clean the ground and all that. But that is just sweeping and cleaning with water—you don’t need the [higher-level] skills. Simple jobs like this, we are not able to get them. In regional Australia, employment opportunities tend to be limited (Fozdar and Hartley); the unemployment rate in Easthaven is twice the national average. Opportunities to study are also more limited than in urban centres, and would-be students are not always eligible for financial assistance to gain or upgrade qualifications. Even when people do have appropriate qualifications, work experience, and language proficiency, the colour of their skin may still mean they miss out on a job. Tilbury and Colic-Peisker have documented the various ways in which employers deflect responsibility for racial discrimination, including the “common” strategy (658) of arguing that while the employer or organisation is not prejudiced, they have to discriminate because of their clients’ needs or expectations. I heard this strategy deployed in an interview with a local businesswoman, Catriona: We were advertising for a new technician. And one of the African refugees came to us and he’d had a lot of IT experience. And this is awful, but we felt we couldn't give him the job, because we send our technicians into people's houses, and we knew that if a black African guy rocked up at someone’s house to try and fix their computer, they would not always be welcomed in all—look, it would not be something that [Easthaven] was ready for yet. Colic-Peisker and Tilbury (Refugees and Employment) note that while Australia has strict anti-discrimination legislation, this legislation may be of little use to the people who, because of the way they look and sound (skin colour, dress, accent), are most likely to face prejudice and discrimination. The researchers found that perceived discrimination in the labour market affected humanitarian settlers’ sense of satisfaction with their new lives far more than, for example, racist remarks, which were generally shrugged off; the students I interviewed spoke of racism as “expected,” but “quite rare.” Most of the people Colic-Peisker and Tilbury surveyed reported finding Australians “friendly and accepting” (33). Even if there is no active discrimination on the basis of skin colour in employment, education, or housing, or overt racism in social situations, visible difference can still affect a person’s sense of belonging, as Joseph recounts: I think of myself as Australian, but my colour doesn’t [laughs] […] Unfortunately many, many Australians are expecting that Australia is a country of Europeans … There is no need for somebody to ask “Where do you come from?” and “Do you find Australia here safe?” and “Do you enjoy it?” Those kind of questions doesn’t encourage that we are together. This highlights another dimension of resettlement: the journey from feeling “at home” to feeling “foreign” to, eventually, feeling at home again in the host country (Colic-Peisker and Tilbury, Refugees and Employment). In the case of visibly different settlers, however, this last stage may never be completed. Whether the questions asked of Joseph are well intentioned or not, their effect may be the same: they position him as a “forever foreigner” (Park). A further dimension of resettlement—one already touched on—is the degree to which humanitarian settlers actively manage their “rebirth,” and are allowed and encouraged to do so. A key factor will be their mastery of English, and Easthaven’s ESL teachers are thus pivotal in the resettlement process. There is little doubt that many of these teachers have gone to great lengths to help this cohort of students, not only in terms of language acquisition but also social inclusion. However, in some cases what is initially supportive can, with time, begin to undermine refugees’ maturity into independent citizens. Sharon, an ESL teacher at one of the schools, told me how she and her colleagues would give their refugee-background students lifts to social events: But then maybe three years down the track they have a car and their dad can drive, but they still won’t take them […] We arrive to pick them up and they’re not ready, or there’s five fantastic cars in the driveway, and you pick up the student and they say “My dad’s car’s much bigger and better than yours” [laughs]. So there’s an expectation that we’ll do stuff for them, but we’ve created that [my emphasis]. Other support services may have more complex interests in keeping refugee settlers dependent. The more clients an agency has, the more services it provides, and the longer clients stay on its books, the more lucrative the contract for the agency. Thus financial and employment imperatives promote competition rather than collaboration between service providers (Fozdar and Hartley; Sidhu and Taylor) and may encourage assumptions about what sorts of services different individuals and groups want and need. Colic-Peisker and Tilbury (“‘Active’ and ‘Passive’ Resettlement”) have developed a typology of resettlement styles—“achievers,” “consumers,” “endurers,” and “victims”—but stress that a person’s style, while influenced by personality and pre-migration factors, is also shaped by the institutions and individuals they come into contact with: “The structure of settlement and welfare services may produce a victim mentality, leaving members of refugee communities inert and unable to see themselves as agents of change” (76). The prevailing narrative of “the traumatised refugee” is a key aspect of this dynamic (Colic-Peisker and Tilbury, “‘Active’ and ‘Passive’ Resettlement”; Fozdar and Hartley; Keddie). Service providers may make assumptions about what humanitarian settlers have gone through before arriving in Australia, how they have been affected by their experiences, and what must be done to “fix” them. Norah, a long-time caseworker, told me: I think you get some [providers] who go, “How could you have gone through something like that and not suffered? There must be—you must have to talk about this stuff” […] Where some [refugees] just come with the [attitude] “We’re all born into a situation; that was my situation, but I’m here now and now my focus is this.” She cited failure to consider cultural sensitivities around mental illness and to recognise that stress and anxiety during early resettlement are normal (Tilbury) as other problems in the sector: [Newly arrived refugees] go through the “happy to be here” [phase] and now “hang on, I’ve thumped to the bottom and I’m missing my own foods and smells and cultures and experiences”. I think sometimes we’re just too quick to try and slot people into a box. One factor that appears to be vital in fostering and sustaining resilience is social connection. Norah said her clients were “very good on the mobile phone” and had links “everywhere,” including to family and friends in their countries of birth, transition countries, and other parts of Australia. A 2011 report for DIAC, Settlement Outcomes of New Arrivals, found that humanitarian entrants to Australia were significantly more likely to be members of cultural and/or religious groups than other categories of immigrants (Australian Survey Research). I found many examples of efforts to build both bonding and bridging capital (Putnam) in Easthaven, and I offer two examples below. Several people told me about a dinner-dance that had been held a few weeks before one of my visits. The event was organised by an African women’s group, which had been formed—with funding assistance—several years before. The dinner-dance was advertised in the local newspaper and attracted strong interest from a broad cross-section of Easthaveners. To Debbie, a counsellor, the response signified a “real turnaround” in community relations and was a big boon to the women’s sense of belonging. Erica, a teacher, told me about a cultural exchange day she had organised between her bush school—where almost all of the children are Anglo Australian—and ESL students from one of the town schools: At the start of the day, my kids were looking at [the refugee-background students] and they were scared, they were saying to me, "I feel scared." And we shoved them all into this tiny little room […] and they had no choice but to sit practically on top of each other. And by the end of the day, they were hugging each other and braiding their hair and jumping and playing together. Like Uptin, Wright and Harwood, I found that the refugee-background students placed great importance on the social aspects of school. Sisay, the girl I introduced earlier in this paper, said: “It’s just all about friendship and someone to be there for you […] We try to be friends with them [the non-refugee students] sometimes but sometimes it just seems they don’t want it.” Conclusion A 2012 report on refugee settlement services in NSW concludes that the state “is not meeting its responsibility to humanitarian entrants as well as it could” (Audit Office of New South Wales 2); moreover, humanitarian settlers in NSW are doing less well on indicators such as housing and health than humanitarian settlers in other states (3). Evaluating the effectiveness of formal refugee-centred programs was not part of my research and is beyond the scope of this paper. Rather, I have sought to reveal some of the ways in which the attitudes, assumptions, and everyday practices of service providers and members of the broader community impact on refugees' settlement experience. What I heard repeatedly in the interviews I conducted was that it was emotional and practical support (Matthews; Tilbury), and being asked as well as told (about their hopes, needs, desires), that helped Easthaven’s refugee settlers bear themselves into fulfilling new lives. References Audit Office of New South Wales. Settling Humanitarian Entrants in New South Wales—Executive Summary. May 2012. 15 Aug. 2013 ‹http://www.audit.nsw.gov.au/ArticleDocuments/245/02_Humanitarian_Entrants_2012_Executive_Summary.pdf.aspx?Embed=Y>. Australian Bureau of Statistics. 2011 Census QuickStats. Mar. 2013. 11 Aug. 2013 ‹http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/0>. Australian Survey Research. Settlement Outcomes of New Arrivals—Report of Findings. Apr. 2011. 15 Aug. 2013 ‹http://www.immi.gov.au/media/publications/research/_pdf/settlement-outcomes-new-arrivals.pdf>. 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