Journal articles on the topic 'Mental health care teams Victoria Melbourne'

Aims.The efficacy of Assertive Community Treatment (ACT) is well established in the USA, and to a lesser extent in Australia, whereas UK studies suggest little advantage for ACT over usual care. Implementation of ACT varies and these differences may explain variability in reported efficacy. We aimed to investigate differences in ACT implementation between Melbourne, Australia and London, UK.Methods.In a cross-sectional survey, we investigated team organisation, staff and client characteristics from four Melbourne ACT teams using almost identical methods to the Pan London Assertive Outreach studies of 24 ACT teams.Results.Client characteristics, staff satisfaction and burnout were very similar. Three of four Melbourne teams made over 70% of client contacts ‘in vivo’ compared to only one-third of comparable London teams, although all teams were rated as ‘ACT-like’. Melbourne teams scored more highly on team approach. Three quarters of clients were admitted in the preceding 2 years but Melbourne clients had shorter stays.Conclusions.Differences in the implementation of ‘active components’ of home treatment models that have been associated with better client outcomes (home visiting, team approach) may explain international differences in ACT efficacy. Existing fidelity measures may not adequately weight these important elements of the model.

Introduction. There is a higher prevalence of Parkinson’s disease (PD) in rural Australia and a poorer perceived quality of life of rural Australians with PD. Coordinated multidisciplinary teams specialised and experienced in the treatment of PD are recommended as the preferred model of care best able to manage the complexities of this disorder. There remains a lack of team-based specialised PD services in rural Australia available to people living with PD. This study aims to explore how the lack of specialised PD services impacts on the person’s experiences of the health care they receive in rural Victoria. This study compared the health-care experiences of two different cohorts of people with PD living in rural Victoria; one cohort living in East Gippsland have had an established comprehensive care model implemented with local trained teams and supported by a metropolitan PD centre, and the other cohort was recruited from the remainder of Victoria who had received standard rural care. Methods. This descriptive study used a survey to explore health-care experiences. Questionnaires were mailed to participants living in rural Victoria. Eligibility criteria included having a diagnosis of PD or Parkinsonism and sufficient English to respond to the survey. The validated Patient-Centred Questionnaire for PD was used to measure health-care experiences. The questions are grouped accordingly under one of the 6 subscales or domains. Outcomes from the questionnaire included summary experience scores (SES) for 6 subscales; overall patient-centeredness score (OPS); and quality improvement scores (QIS). Secondary outcomes included health-related quality of life using the disease-specific questionnaire PDQ39; disease severity using the Hoehn and Yahr staging tool; and disability using the Movement Disorders Society-Unified Parkinson’s Disease Rating Scale, part II. Results. Thirty-nine surveys were returned from the East Gippsland group and 68 from the rural group. The East Gippsland group rated significantly more positive the subscales “empathy and PD expertise,” P=0.02, and “continuity and collaboration of professionals,” P=0.01. The groups did not differ significantly for the remaining 4 subscales (P>0.05) nor for the OPS (P=0.17). The QIS showed both groups prioritised the health-care aspect “provision of tailored information” for improvement. Quality of life was greater (P<0.05) and impairment (P=0.012) and disability were less (P=0.002) in the East Gippsland group. Conclusion. Participants who received health care from the East Gippsland program had better key health-care experiences along with better QOL and less impairment and disability. Participants prioritised provision of information as needing further improvement.

Many patients with mental illness depend on family physicians (FPs) for their physical and mental health care, yet FPs often report dissatisfaction with the quality of mental health care they provide. A 2-year, quality improvement (QI) manual-based initiative was developed to increase FPs' diagnostic, cognitive-behavioural, and interpersonal treatment skills for depression. Two teams, each consisting of a psychiatrist and a mental health therapist, rotated through 18 family practices in Victoria, British Columbia, mentoring the model on-site with physicians and patients. Feedback suggests that this initiative enhanced the ability of FPs to diagnose depression and comorbid disorders, organize problems, and treat depression using non-pharmaceutical approaches.

Objective: To provide a biography of G Vernon Davies who took up a career in old age psychiatry in 1955 at the age of 67 at Mont Park Hospital in an era when there few psychiatrists working in the field. Conclusion: In the 1950s and 1960s, Vernon Davies worked as an old age psychiatrist and published papers containing sensible practical advice informed by contemporary research and experience, broadly applicable to both primary and secondary care, presented in a compassionate and empathetic manner. His clinical research in old age psychiatry resulted in the first doctoral degree in psychiatry awarded at the University of Melbourne at the age of 79. Before commencing old age psychiatry, he served in the Australian Army Medical Corps as a Regimental Medical Officer and received the Distinguished Service Order. He spent 3 years as a medical missionary in the New Hebrides before settling at Wangaratta where he worked as a physician for over 30 years. He contributed to his local community in a broad range of activities. Vernon Davies is an Australian pioneer of old age psychiatry.

This article provides an overview of a unique way to respond to the complex oral health needs of people with a mental illness. People with a psychiatric disability, especially those of low income and insecure housing, are at high risk of developing oral disease, due to issues associated with mental illness, poverty and the side-effects of psychotropic medication. The 'Dental as Anything' program is a collaborative partnership between the mental health, dental and administration teams of the Inner South Community Health Service (ISCHS) in Melbourne. It provides a flexible program incorporating engagement, clinical care, education and support in response to client needs. Utilising a health promotion framework and an assertive outreach model, it accesses people who traditionally do not approach mainstream services. The program manages to "reach the unreachable".

Rapid Response Teams (RRTs) have been introduced into hospitals worldwide in an effort to improve the outcomes of deteriorating hospitalised patients. Recently, there has been increased awareness of the need to develop systems other than RRTs for deteriorating patients. In May 2016, the 12th International Conference on Rapid Response Systems and Medical Emergency Teams was held in Melbourne. This represented a collaboration between the newly constituted International Society for Rapid Response Systems (iSRRS) and the Australian and New Zealand Intensive Care Society. The conference program included broad ranging presentations related to general clinical deterioration in the acute care setting, as well as deterioration in the emergency department, during pregnancy, in the paediatric setting, and deterioration in mental health status. This article briefly summarises the key features of the conference, links to presentations, and the 18 abstracts of the accepted free papers.

This article seeks to build on the earlier article in this newsletter by Victoria Tew regarding formulation in teams, and the consistent references made to consultation level input being provided across the Trent region. This article will discuss the informal qualitative feedback received from a small group of health care professionals (HCPs) from a Mental Heath Service for Older People (MHSOP) with regards to the use of formulation sessions provided on a consultation basis and reflective practice groups in a newly-developed clinical psychology service in a rural area. I hope it will assist in demonstrating the power of asking for feedback and highlighting to higher management, and consequently commissioners, the content of that feedback as a contribution of evidence for the input that can be provided by clinical psychology to be seen as integral in revisions of service delivery within our area.

Recently arrived older refugees in resettlement countries are a particularly vulnerable population who face many risks to their health and well‐being, and many challenges in accessing services. This paper reports on a project undertaken in Victoria, Australia to explore the needs of older people from 14 recently arrived refugee communities, and the barriers to their receiving health and aged care. Findings from consultations with community workers and service providers highlight the key issues of isolation, family conflict and mental illness affecting older refugees, and point to ways in which policy‐makers and service providers can better respond to these small but deserving communities.

ABSTRACTBackground: In the next decades of the twenty-first century, the global aging of populations will challenge every nation's ability to provide leadership by qualified health professionals to reshape and improve health care delivery systems. The challenge for educators is to design and deliver courses that will give students the knowledge and skills they need to fill that leadership role confidently in dementia care services. This paper explores the ways in which a curriculum can develop graduates who are ready to become leaders in shaping their industry.Method: The Master of Health Science – Aged Services (MHSAS) program at Victoria University, Melbourne, Australia is applied as a case study to describe the process by which the concept of leadership is applied as the key driver in curriculum development, teaching practices and learning outcomes.Results: Evaluation instruments employed in a variety of purposes including teaching, curriculum planning and unit appraisal are discussed. Challenges for the future are proposed including the need for postgraduate programs in dementia to seek stronger national and international benchmarks and associations with other educational institutions to promote leadership and a vision of what is possible and desirable in dementia care provision.Conclusions: In the twenty-first century, effective service provision in the aged health care sector will require postgraduate curricula that equip students for dementia care leadership. The MHSAS program provides an established template for such curricula.

Over the past few years, numerous articles have highlighted the strain on (and drain of staff from) our specialty. Many general adult psychiatrists are developing bleak views of themselves, the world and the future. Encouragingly, consultants such as Hampson (2003) are structuring their roles with some success. However, we are going through a major overhaul of the model of delivery of care and need to adapt our roles accordingly. Although tuning a Triumph Spitfire might make it run more smoothly for a while, it is still an inferior beast compared with a modern car and might be better on the scrap heap. A more radical approach is needed, which we outline in this article. One of the authors (G.I.) has experience of working as a consultant psychiatrist in Australia, where the state of Victoria changed the model of delivery of general adult psychiatric services to adopt a superior American model, leading to improved patient and carer satisfaction (Joyet al, 2001). The same model has been adopted by the UK government (Department of Health, 2001) through the creation of crisis assessment and treatment services (CATS), assertive outreach teams, and specialist community and in-patient services. Consultant psychiatrists are challenged to adapt their practice accordingly. The Royal College of Psychiatrists has recently set up a Working Group to address this issue (Royal College of Psychiatrists, 2004).

Objective. To outline the major findings of a qualitative evaluation of an Early Psychosis Service 3 years after its establishment. Design. Data to evaluate the service were collected from team meetings, focus groups, individual interviews and questionnaires administered to clinicians, school staff, patients, carers and families. Setting. Barwon Health; Mental Health, Drug and Alcohol Services provide public mental health care to the Geelong, Victoria, region (population 270 000), which is a mixed urban and rural setting. The Early Psychosis Service model implemented involved the placement of two early psychosis workers into each of five adult geographically based Area Mental Health Teams rather than the establishment of a single Early Psychosis Team. Results. The service was found not to adhere to its original design in several key respects. Caseloads and periods of case management were found to be lower and shorter respectively than was originally planned for, caseworkers often experienced isolation and resentment from their adult service coworkers, the service was perceived to be difficult to access and premises not to be youth friendly and communication and engagement with external agencies and service providers was perceived to be poor. Conclusions. The choice of service model, inadequate consultation with stakeholders and inadequate promotion of the service contributed to its failure to reach early expectations. Because of these and other issues, including difficulties distinguishing between early psychosis and non-psychosis, a decision was made to restructure youth services and a separate youth mental health service, which incorporated the Early Psychosis Service function, was established.

IntroductionCognitive, behavioural, academic, mental health and social impairments are common following paediatric traumatic brain injury (TBI). However, studies are often reliant on small samples of children drawn from narrow age bands, and employ highly variable methodologies, which make it challenging to generalise existing research findings and understand the lifetime history of TBI.Method and analysisThis study will synthesise common data sets from national (Victoria, New South Wales, Queensland) and international (New Zealand) collaborators, such that common data elements from multiple cohorts recruited from these four sites will be extracted and harmonised. Participant-level harmonised data will then be pooled to create a single integrated data set of participants including common cognitive, social, academic and mental health outcome variables. The large sample size (n=1816), consisting of participants with mild, moderate and severe TBI, will provide statistical power to answer important questions that cannot be addressed by small, individual cohorts. Complex statistical modelling, such as generalised estimation equation, multilevel and latent growth models, will be conducted.Ethics and disseminationEthics approval was granted by the Human Research Ethics Committee (HREC) of the Royal Children’s Hospital (RCH), Melbourne (HREC Reference Number 2019.168). The approved study protocol will be used for all study-related procedures. Findings will be translated into clinical practice, inform policy decisions, guide the appropriate allocation of limited healthcare resources and support the implementation of individualised care.

IntroductionOptimal early childhood development is an international priority. Risks during pregnancy and early childhood have lasting effects because growth is rapid. We will test whether a complex intervention addressing multiple modifiable risks: maternal nutrition, mental health, parenting capabilities, infant health and development and gender-based violence, is effective in reducing deficient cognitive development among children aged two in rural Vietnam.Methods and analysisThe Learning Clubs intervention is a structured programme combining perinatal stage-specific information, learning activities and social support. It comprises 20 modules, in 19 accessible, facilitated groups for women at a community centre and one home visit. Evidence-informed content is from interventions to address each risk tested in randomised controlled trials in other resource-constrained settings. Content has been translated and culturally adapted for Vietnam and acceptability and feasibility established in pilot testing.We will conduct a two-arm parallel-group cluster-randomised controlled trial, with the commune as clustering unit. An independent statistician will select 84/112 communes in Ha Nam Province and randomly assign 42 to the control arm providing usual care and 42 to the intervention arm. In total, 1008 pregnant women (12 per commune) from 84 clusters are needed to detect a difference in the primary outcome (Bayley Scales of Infant and Toddler Development Cognitive Score <1 SD below standardised norm for 2 years of age) of 15% in the control and 8% in the intervention arms, with 80% power, significance 0.05 and intracluster correlation coefficient 0.03.Ethics and disseminationMonash University Human Research Ethics Committee (Certificate Number 20160683), Melbourne, Victoria, Australia and the Institutional Review Board of the Hanoi School of Public Health (Certificate Number 017-377IDD- YTCC), Hanoi, Vietnam have approved the trial. Results will be disseminated through a comprehensive multistranded dissemination strategy including peer-reviewed publications, national and international conference presentations, seminars and technical and lay language reports.Trial registration numberACTRN12617000442303; Pre-results.

Objectives: This narrative paper describes the influences behind the development of, and key components of a specialist younger-onset dementia service located in metropolitan Victoria, Australia. Conclusion: The Melbourne Young-Onset Dementia Service was established in 2013 and provides diagnosis and ongoing care for people with younger-onset dementia and their families, through collaboration with other medical units, allied health and community services. It is potentially a model for other younger-onset dementia services nationally and internationally.

Introduction: Bubbles and Sport The ephemeral materiality of bubbles – beautiful, spectacular, and distracting but ultimately fragile – when applied to protect or conserve in the interests of sport-media profit, creates conditions that exacerbate existing inequalities in sport and society. Bubbles are usually something to watch, admire, and chase after in their brief yet shiny lives. There is supposed to be, technically, nothing inside them other than one or more gasses, and yet we constantly refer to people and objects being inside bubbles. The metaphor of the bubble has been used to describe the life of celebrities, politicians in purpose-built capital cities like Canberra, and even leftist, environmentally activist urban dwellers. The metaphorical and material qualities of bubbles are aligned—they cannot be easily captured and are liable to change at any time. In this article we address the metaphorical sporting bubble, which is often evoked in describing life in professional sport. This is a vernacular term used to capture and condemn the conditions of life of elite sportspeople (usually men), most commonly after there has been a sport-related scandal, especially of a sexual nature (Rowe). It is frequently paired with connotatively loaded adjectives like pampered and indulged. The sporting bubble is rarely interrogated in academic literature, the concept largely being left to the media and moral entrepreneurs. It is represented as involving a highly privileged but also pressurised life for those who live inside it. A sporting bubble is a world constructed for its most prized inhabitants that enables them to be protected from insurgents and to set the terms of their encounters with others, especially sport fans and disciplinary agents of the state. The Covid-19 pandemic both reinforced and reconfigured the operational concept of the bubble, re-arranging tensions between safety (protecting athletes) and fragility (short careers, risks of injury, etc.) for those within, while safeguarding those without from bubble contagion. Privilege and Precarity Bubble-induced social isolation, critics argue, encourages a loss of perspective among those under its protection, an entitled disconnection from the usual rules and responsibilities of everyday life. For this reason, the denizens of the sporting bubble are seen as being at risk to themselves and, more troublingly, to those allowed temporarily to penetrate it, especially young women who are first exploited by and then ejected from it (Benedict). There are many well-documented cases of professional male athletes “behaving badly” and trying to rely on institutional status and various versions of the sporting bubble for shelter (Flood and Dyson; Reel and Crouch; Wade). In the age of mobile and social media, it is increasingly difficult to keep misbehaviour in-house, resulting in a slew of media stories about, for example, drunkenness and sexual misconduct, such as when then-Sydney Roosters co-captain Mitchell Pearce was suspended and fined in 2016 after being filmed trying to force an unwanted kiss on a woman and then simulating a lewd act with her dog while drunk. There is contestation between those who condemn such behaviour as aberrant and those who regard it as the conventional expression of youthful masculinity as part of the familiar “boys will be boys” dictum. The latter naturalise an inequitable gender order, frequently treating sportsmen as victims of predatory women, and ignoring asymmetries of power between men and women, especially in homosocial environments (Toffoletti). For those in the sporting bubble (predominantly elite sportsmen and highly paid executives, also mostly men, with an array of service staff of both sexes moving in and out of it), life is reflected for those being protected via an array of screens (small screens in homes and indoor places of entertainment, and even smaller screens on theirs and others’ phones, as well as huge screens at sport events). These male sport stars are paid handsomely to use their skill and strength to perform for the sporting codes, their every facial expression and bodily action watched by the media and relayed to audiences. This is often a precarious existence, the usually brief career of an athlete worker being dependent on health, luck, age, successful competition with rivals, networks, and club and coach preferences. There is a large, aspirational reserve army of athletes vying to play at the elite level, despite risks of injury and invasive, life-changing medical interventions. Responsibility for avoiding performance and image enhancing drugs (PIEDs) also weighs heavily on their shoulders (Connor). Professional sportspeople, in their more reflective moments, know that their time in the limelight will soon be up, meaning that getting a ticket to the sporting bubble, even for a short time, can make all the difference to their post-sport lives and those of their families. The most vulnerable of the small minority of participants in sport who make a good, short-term living from it are those for whom, in the absence of quality education and prior social status, it is their sole likely means of upward social mobility (Spaaij). Elite sport performers are surrounded by minders, doctors, fitness instructors, therapists, coaches, advisors and other service personnel, all supporting athletes to stay focussed on and maximise performance quality to satisfy co-present crowds, broadcasters, sponsors, sports bodies and mass media audiences. The shield offered by the sporting bubble supports the teleological win-at-all-costs mentality of professional sport. The stakes are high, with athlete and executive salaries, sponsorships and broadcasting deals entangled in a complex web of investments in keeping the “talent” pivotal to the “attention economy” (Davenport and Beck)—the players that provide the content for sale—in top form. Yet, the bubble cannot be entirely secured and poor behaviour or performance can have devastating effects, including permanent injury or disability, mental illness and loss of reputation (Rowe, “Scandals and Sport”). Given this fragile materiality of the sporting bubble, it is striking that, in response to the sudden shutdown following the economic and health crisis caused by the 2020 global pandemic, the leaders of professional sport decided to create more of them and seek to seal the metaphorical and material space with unprecedented efficiency. The outcome was a multi-sided tale of mobility, confinement, capital, labour, and the gendering of sport and society. The Covid-19 Gilded Cage Sociologists such as Zygmunt Bauman and John Urry have analysed the socio-politics of mobilities, whereby some people in the world, such as tourists, can traverse the globe at their leisure, while others remain fixed in geographical space because they lack the means to be mobile or, in contrast, are involuntarily displaced by war, so-called “ethnic cleansing”, famine, poverty or environmental degradation. The Covid-19 global pandemic re-framed these matters of mobilities (Rowe, “Subjecting Pandemic Sport”), with conventional moving around—between houses, businesses, cities, regions and countries—suddenly subjected to the imperative to be static and, in perniciously unreflective technocratic discourse, “socially distanced” (when what was actually meant was to be “physically distanced”). The late-twentieth century analysis of the “risk society” by Ulrich Beck, in which the mysterious consequences of humans’ predation on their environment are visited upon them with terrifying force, was dramatically realised with the coming of Covid-19. In another iteration of the metaphor, it burst the bubble of twenty-first century global sport. What we today call sport was formed through the process of sportisation (Maguire), whereby hyper-local, folk physical play was reconfigured as multi-spatial industrialised sport in modernity, becoming increasingly reliant on individual athletes and teams travelling across the landscape and well over the horizon. Co-present crowds were, in turn, overshadowed in the sport economy when sport events were taken to much larger, dispersed audiences via the media, especially in broadcast mode (Nicholson, Kerr, and Sherwood). This lucrative mediation of professional sport, though, came with an unforgiving obligation to generate an uninterrupted supply of spectacular live sport content. The pandemic closed down most sports events and those that did take place lacked the crucial participation of the co-present crowd to provide the requisite event atmosphere demanded by those viewers accustomed to a sense of occasion. Instead, they received a strange spectacle of sport performers operating in empty “cathedrals”, often with a “faked” crowd presence. The mediated sport spectacle under the pandemic involved cardboard cut-out and sex doll spectators, Zoom images of fans on large screens, and sampled sounds of the crowd recycled from sport video games. Confected co-presence produced simulacra of the “real” as Baudrillardian visions came to life. The sporting bubble had become even more remote. For elite sportspeople routinely isolated from the “common people”, the live sport encounter offered some sensory experience of the social – the sounds, sights and even smells of the crowd. Now the sporting bubble closed in on an already insulated and insular existence. It exposed the irony of the bubble as a sign of both privileged mobility and incarcerated athlete work, both refuge and prison. Its logic of contagion also turned a structure intended to protect those inside from those outside into, as already observed, a mechanism to manage the threat of insiders to outsiders. In Australia, as in many other countries, the populace was enjoined by governments and health authorities to help prevent the spread of Covid-19 through isolation and immobility. There were various exceptions, principally those classified as essential workers, a heterogeneous cohort ranging from supermarket shelf stackers to pharmacists. People in the cultural, leisure and sports industries, including musicians, actors, and athletes, were not counted among this crucial labour force. Indeed, the performing arts (including dance, theatre and music) were put on ice with quite devastating effects on the livelihoods and wellbeing of those involved. So, with all major sports shut down (the exception being horse racing, which received the benefit both of government subsidies and expanding online gambling revenue), sport organisations began to represent themselves as essential services that could help sustain collective mental and even spiritual wellbeing. This case was made most aggressively by Australian Rugby League Commission Chairman, Peter V’landys, in contending that “an Australia without rugby league is not Australia”. In similar vein, prominent sport and media figure Phil Gould insisted, when describing rugby league fans in Western Sydney’s Penrith, “they’re lost, because the football’s not on … . It holds their families together. People don’t understand that … . Their life begins in the second week of March, and it ends in October”. Despite misgivings about public safety and equality before the pandemic regime, sporting bubbles were allowed to form, re-form and circulate. The indefinite shutdown of the National Rugby League (NRL) on 23 March 2020 was followed after negotiation between multiple entities by its reopening on 28 May 2020. The competition included a team from another nation-state (the Warriors from Aotearoa/New Zealand) in creating an international sporting bubble on the Central Coast of New South Wales, separating them from their families and friends across the Tasman Sea. Appeals to the mental health of fans and the importance of the NRL to myths of “Australianness” notwithstanding, the league had not prudently maintained a financial reserve and so could not afford to shut down for long. Significant gambling revenue for leagues like the NRL and Australian Football League (AFL) also influenced the push to return to sport business as usual. Sport contests were needed in order to exploit the gambling opportunities – especially online and mobile – stimulated by home “confinement”. During the coronavirus lockdowns, Australians’ weekly spending on gambling went up by 142 per cent, and the NRL earned significantly more than usual from gambling revenue—potentially $10 million above forecasts for 2020. Despite the clear financial imperative at play, including heavy reliance on gambling, sporting bubble-making involved special licence. The state of Queensland, which had pursued a hard-line approach by closing its borders for most of those wishing to cross them for biographical landmark events like family funerals and even for medical treatment in border communities, became “the nation's sporting hub”. Queensland became the home of most teams of the men’s AFL (notably the women’s AFLW season having been cancelled) following a large Covid-19 second wave in Melbourne. The women’s National Netball League was based exclusively in Queensland. This state, which for the first time hosted the AFL Grand Final, deployed sport as a tool in both national sports tourism marketing and internal pre-election politics, sponsoring a documentary, The Sporting Bubble 2020, via its Tourism and Events arm. While Queensland became the larger bubble incorporating many other sporting bubbles, both the AFL and the NRL had versions of the “fly in, fly out” labour rhythms conventionally associated with the mining industry in remote and regional areas. In this instance, though, the bubble experience did not involve long stays in miners’ camps or even the one-night hotel stopovers familiar to the popular music and sport industries. Here, the bubble moved, usually by plane, to fulfil the requirements of a live sport “gig”, whereupon it was immediately returned to its more solid bubble hub or to domestic self-isolation. In the space created between disciplined expectation and deplored non-compliance, the sporting bubble inevitably became the scrutinised object and subject of scandal. Sporting Bubble Scandals While people with a very low risk of spreading Covid-19 (coming from areas with no active cases) were denied entry to Queensland for even the most serious of reasons (for example, the death of a child), images of AFL players and their families socialising and enjoying swimming at the Royal Pines Resort sporting bubble crossed our screens. Yet, despite their (players’, officials’ and families’) relative privilege and freedom of movement under the AFL Covid-Safe Plan, some players and others inside the bubble were involved in “scandals”. Most notable was the case of a drunken brawl outside a Gold Coast strip club which led to two Richmond players being “banished”, suspended for 10 matches, and the club fined $100,000. But it was not only players who breached Covid-19 bubble protocols: Collingwood coaches Nathan Buckley and Brenton Sanderson paid the $50,000 fine imposed on the club for playing tennis in Perth outside their bubble, while Richmond was fined $45,000 after Brooke Cotchin, wife of team captain Trent, posted an image to Instagram of a Gold Coast day spa that she had visited outside the “hub” (the institutionally preferred term for bubble). She was subsequently distressed after being trolled. Also of concern was the lack of physical distancing, and the range of people allowed into the sporting bubble, including babysitters, grandparents, and swimming coaches (for children). There were other cases of players being caught leaving the bubble to attend parties and sharing videos of their “antics” on social media. Biosecurity breaches of bubbles by players occurred relatively frequently, with stern words from both the AFL and NRL leaders (and their clubs) and fines accumulating in the thousands of dollars. Some people were also caught sneaking into bubbles, with Lekahni Pearce, the girlfriend of Swans player Elijah Taylor, stating that it was easy in Perth, “no security, I didn’t see a security guard” (in Barron, Stevens, and Zaczek) (a month later, outside the bubble, they had broken up and he pled guilty to unlawfully assaulting her; Ramsey). Flouting the rules, despite stern threats from government, did not lead to any bubble being popped. The sport-media machine powering sporting bubbles continued to run, the attendant emotional or health risks accepted in the name of national cultural therapy, while sponsorship, advertising and gambling revenue continued to accumulate mostly for the benefit of men. Gendering Sporting Bubbles Designed as biosecurity structures to maintain the supply of media-sport content, keep players and other vital cogs of the machine running smoothly, and to exclude Covid-19, sporting bubbles were, in their most advanced form, exclusive luxury camps that illuminated the elevated socio-cultural status of sportsmen. The ongoing inequalities between men’s and women’s sport in Australia and around the world were clearly in evidence, as well as the politics of gender whereby women are obliged to “care” and men are enabled to be “careless” – or at least to manage carefully their “duty of care”. In Australia, the only sport for women that continued during the height of the Covid-19 lockdown was netball, which operated in a bubble that was one of sacrifice rather than privilege. With minimum salaries of only $30,000 – significantly less than the lowest-paid “rookies” in the AFL – and some being mothers of small children and/or with professional jobs juggled alongside their netball careers, these elite sportswomen wanted to continue to play despite the personal inconvenience or cost (Pavlidis). Not one breach of the netballers out of the bubble was reported, indicating that they took their responsibilities with appropriate seriousness and, perhaps, were subjected to less scrutiny than the sportsmen accustomed to attracting front-page headlines. National Netball League (also known after its Queensland-based naming rights sponsor as Suncorp Super Netball) players could be regarded as fortunate to have the opportunity to be in a bubble and to participate in their competition. The NRL Women’s (NRLW) Premiership season was also completed, but only involved four teams subject to fly in, fly out and bubble arrangements, and being played in so-called curtain-raiser games for the NRL. As noted earlier, the AFLW season was truncated, despite all the prior training and sacrifice required of its players. Similarly, because of their resource advantages, the UK men’s and boy’s top six tiers of association football were allowed to continue during lockdown, compared to only two for women and girls. In the United States, inequalities between men’s and women’s sports were clearly demonstrated by the conditions afforded to those elite sportswomen inside the Women’s National Basketball Association (WNBA) sport bubble in the IMG Academy in Florida. Players shared photos of rodent traps in their rooms, insect traps under their mattresses, inedible food and blocked plumbing in their bubble accommodation. These conditions were a far cry from the luxury usually afforded elite sportsmen, including in Florida’s Walt Disney World for the men’s NBA, and is just one of the many instances of how gendered inequality was both reproduced and exacerbated by Covid-19. Bursting the Bubble As we have seen, governments and corporate leaders in sport were able to create material and metaphorical bubbles during the Covid-19 lockdown in order to transmit stadium sport contests into home spaces. The rationale was the importance of sport to national identity, belonging and the routines and rhythms of life. But for whom? Many women, who still carry the major responsibilities of “care”, found that Covid-19 intensified the affective relations and gendered inequities of “home” as a leisure site (Fullagar and Pavlidis). Rates of domestic violence surged, and many women experienced significant anxiety and depression related to the stress of home confinement and home schooling. During the pandemic, women were also more likely to experience the stress and trauma of being first responders, witnessing virus-related sickness and death as the majority of nurses and care workers. They also bore the brunt of much of the economic and employment loss during this time. Also, as noted above, livelihoods in the arts and cultural sector did not receive the benefits of the “bubble”, despite having a comparable claim to sport in contributing significantly to societal wellbeing. This sector’s workforce is substantially female, although men dominate its senior roles. Despite these inequalities, after the late March to May hiatus, many elite male sportsmen – and some sportswomen - operated in a bubble. Moving in and out of them was not easy. Life inside could be mentally stressful (especially in long stays of up to 150 days in sports like cricket), and tabloid and social media troll punishment awaited those who were caught going “over the fence”. But, life in the sporting bubble was generally preferable to the daily realities of those afflicted by the trauma arising from forced home confinement, and for whom watching moving sports images was scant compensation for compulsory immobility. The ethical foundation of the sparkly, ephemeral fantasy of the sporting bubble is questionable when it is placed in the service of a voracious “media sports cultural complex” (Rowe, Global Media Sport) that consumes sport labour power and rolls back progress in gender relations as a default response to a global pandemic. Covid-19 dramatically highlighted social inequalities in many areas of life, including medical care, work, and sport. For the small minority of people involved in sport who are elite professionals, the only thing worse than being in a sporting bubble during the pandemic was not being in one, as being outside precluded their participation. Being inside the bubble was a privilege, albeit a dubious one. But, as in wider society, not all sporting bubbles are created equal. Some are more opulent than others, and the experiences of the supporting and the supported can be very different. The surface of the sporting bubble may be impermanent, but when its interior is opened up to scrutiny, it reveals some very durable structures of inequality. Bubbles are made to burst. They are, by nature, temporary, translucent structures created as spectacles. As a form of luminosity, bubbles “allow a thing or object to exist only as a flash, sparkle or shimmer” (Deleuze, 52). In echoing Deleuze, Angela McRobbie (54) argues that luminosity “softens and disguises the regulative dynamics of neoliberal society”. The sporting bubble was designed to discharge that function for those millions rendered immobile by home confinement legislation in Australia and around the world, who were having to deal with the associated trauma, risk and disadvantage. 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Introduction As social-distancing mandates in response to COVID-19 restricted in-person data collection methods such as participant observation and interviews, researchers turned to socially distant methods such as interviewing via video-conferencing technology (Lobe et al.). These were not new tools nor methods, but the pandemic muted any bias towards face-to-face data collection methods. Exemplified in crowd-sourced documents such as Doing Fieldwork in a Pandemic, researchers were encouraged to pivot to digital methods as a means of fulfilling research objectives, “specifically, ideas for avoiding in-person interactions by using mediated forms that will achieve similar ends” (Lupton). The benefits of digital methods for expanding participant cohorts and scope of research have been touted long before 2020 and COVID-19, and, as noted by Murthy, are “compelling” (“Emergent” 172). Research conducted by digital methods can expect to reap benefits such as “global datasets/respondents” and “new modalities for involving respondents” (Murthy, “Emergent” 172). The pivot to digital methods is not in and of itself an issue. What concerns us is that in the dialogues about shifting to digital methods during COVID-19, there does not yet appear to have been a critical consideration of how participant samples and collected data will be impacted upon or skewed towards recording the experiences of advantaged cohorts. Existing literature focusses on the time-saving benefits for the researcher, reduction of travel costs (Fujii), the minimal costs for users of specific platforms – e.g. Skype –, and presumes ubiquity of device access for participants (Cater). We found no discussion on data costs of accessing such services being potential barriers to participation in research, although Deakin and Wakefield did share our concern that: Online interviews may ... mean that some participants are excluded due to the need to have technological competence required to participate, obtain software and to maintain Internet connection for the duration of the discussion. In this sense, access to certain groups may be a problem and may lead to issues of representativeness. (605) We write this as a provocation to our colleagues conducting research at this time to consider the cultural and material capital of their participants and how that capital enables them to participate in digitally-mediated data gathering practices, or not, and to what extent. Despite highlighting the potential benefits of digital methods within a methodological tool kit, Murthy previously cautioned against the implications posed by digital exclusion, noting that “the drawback of these research options is that membership of these communities is inherently restricted to the digital ‘haves’ ... rather than the ‘have nots’” (“Digital” 845). In this article, we argue that while tools such as Zoom have indeed enabled fieldwork to continue despite COVID disruptions, this shift to online platforms has important and under-acknowledged implications for who is and is not able to participate in research. In making this argument, we draw on examples from the Connected Students project, a study of digital inclusion that commenced just as COVID-19 restrictions came into effect in the Australian state of Victoria at the start of 2020. We draw on the experiences of these households to illustrate the barriers that such cohorts face when participating in online research. We begin by providing details about the Connected Students project and then contextualising it through a discussion of research on digital inclusion. We then outline three areas in which households would have experienced (or still do experience) difficulties participating in online research: data, devices, and skills. We use these findings to highlight the barriers that disadvantaged groups may face when engaging in data collection activities over Zoom and question how this is impacting on who is and is not being included in research during COVID-19. The Connected Students Program The Connected Students program was conducted in Shepparton, a regional city located 180km north of Melbourne. The town itself has a population of around 30,000, while the Greater Shepparton region comprises around 64,000 residents. Shepparton was chosen as the program’s site because it is characterised by a unique combination of low-income and low levels of digital inclusion. First, Shepparton ranks in the lowest interval for the Australian Bureau of Statistics’ Socio-Economic Indexes for Areas (SEIFA) and the Index of Relative Socioeconomic Advantage and Disadvantage (IRSAD), as reported in 2016 (Australian Bureau of Statistics, “Census”; Australian Bureau of Statistics, “Index”). Although Shepparton has a strong agricultural and horticultural industry with a number of food-based manufacturing companies in the area, including fruit canneries, dairies, and food processing plants, the town has high levels of long-term and intergenerational unemployment and jobless families. Second, Shepparton is in a regional area that ranks in the lowest interval for the Australian Digital Inclusion Index (Thomas et al.), which measures digital inclusion across dimensions of access, ability, and affordability. Funded by Telstra, Australia’s largest telecommunications provider, and delivered in partnership with Greater Shepparton Secondary College (GSSC), the Connected Students program provided low-income households with a laptop and an unlimited broadband Internet connection for up to two years. Households were recruited to the project via GSSC. To be eligible, households needed to hold a health care card and have at least one child attending the school in year 10, 11, or 12. Both the student and a caregiver were required to participate in the project to be eligible. Additional household members were invited to take part in the research, but were not required to. (See Kennedy & Holcombe-James; and Kennedy et al., "Connected Students", for further details regarding household demographics.) The Australian Digital Inclusion Index identifies that affordability is a significant barrier to digital inclusion in Australia (Thomas et al.). The project’s objective was to measure how removing affordability barriers to accessing connectivity for households impacts on digital inclusion. By providing participating households with a free unlimited broadband internet connection for the duration of the research, the project removed the costs associated with digital access. Access alone is not enough to resolve the digital exclusion confronted by these low-income households. Digital exclusion in these instances is not derived simply from the cost of Internet access, but from the cost of digital devices. As a result, these households typically lacked sufficient digital devices. Each household was therefore provided both a high speed Internet connection, and a brand new laptop with built-in camera, microphone, and speakers (a standard tool kit for video conferencing). Data collection for the Connected Students project was intended to be conducted face-to-face. We had planned in-person observations including semi-structured interviews with household members conducted at three intervals throughout the project’s duration (beginning, middle, and end), and technology tours of each home to spatially and socially map device locations and uses (Kennedy et al., Digital Domesticity). As we readied to make our first research trip to commence the study, COVID-19 was wreaking havoc. It quickly became apparent we would not be travelling to work, much less travelling around the state. We thus pivoted to digital methods, with all our data collection shifting online to interviews conducted via digital platforms such as Zoom and Microsoft Teams. While the pivot to digital methods saved travel hours, allowing us to scale up the number of households we planned to interview, it also demonstrated unexpected aspects of our participants’ lived experiences of digital exclusion. In this article, we draw on our first round of interviews which were conducted with 35 households over Zoom or Microsoft Teams during lockdown. The practice of conducting these interviews reveals insights into the barriers that households faced to digital research participation. In describing these experiences, we use pseudonyms for individual participants and refer to households using the pseudonym for the student participant from that household. Why Does Digital Inclusion Matter? Digital inclusion is broadly defined as universal access to the technologies necessary to participate in social and civic life (Helsper; Livingstone and Helsper). Although recent years have seen an increase in the number of connected households and devices (Thomas et al., “2020”), digital inclusion remains uneven. As elsewhere, digital disadvantage in the Australian context falls along geographic and socioeconomic lines (Alam and Imran; Atkinson et al.; Blanchard et al.; Rennie et al.). Digitally excluded population groups typically experience some combination of education, employment, income, social, and mental health hardship; their predicament is compounded by a myriad of important services moving online, from utility payments, to social services, to job seeking platforms (Australian Council of Social Service; Chen; Commonwealth Ombudsman). In addition to challenges in using essential services, digitally excluded Australians also miss out on the social and cultural benefits of Internet use (Ragnedda and Ruiu). Digital inclusion – and the affordability of digital access – should thus be a key concern for researchers looking to apply online methods. Households in the lowest income quintile spend 6.2% of their disposable income on telecommunications services, almost three times more than wealthier households (Ogle). Those in the lowest income quintile pay a “poverty premium” for their data, almost five times more per unit of data than those in the highest income quintile (Ogle and Musolino). As evidenced by the Australian Digital Inclusion Index, this is driven in part by a higher reliance on mobile-only access (Thomas et al., “2020”). Low-income households are more likely to access critical education, business, and government services through mobile data rather than fixed broadband data (Thomas et al., “2020”). For low-income households, digital participation is the top expense after housing, food, and transport, and is higher than domestic energy costs (Ogle). In the pursuit of responsible and ethical research, we caution against assuming research participants are able to bear the brunt of access costs in terms of having a suitable device, expending their own data resources, and having adequate skills to be able to complete the activity without undue stress. We draw examples from the Connected Students project to support this argument below. Findings: Barriers to Research Participation for Digitally Excluded Households If the Connected Students program had not provided participating households with a technology kit, their preexisting conditions of digital exclusion would have limited their research participation in three key ways. First, households with limited Internet access (particularly those reliant on mobile-only connectivity, and who have a few gigabytes of data per month) would have struggled to provide the data needed for video conferencing. Second, households would have struggled to participate due to a lack of adequate devices. Third, and critically, although the Connected Students technology kit provided households with the data and devices required to participate in the digital ethnography, this did not necessarily resolve the skills gaps that our households confronted. Data Prior to receiving the Connected Students technology kit, many households in our sample had limited modes of connectivity and access to data. For households with comparatively less or lower quality access to data, digital participation – whether for the research discussed here, or in contemporary life – came with very real costs. This was especially the case for households that did not have a home Internet connection and instead relied solely on mobile data. For these households, who carefully managed their data to avoid running out, participating in research through extended video conferences would have been impossible unless adequate financial reimbursement was offered. Households with very limited Internet access used a range of practices to manage and extend their data access by shifting internet costs away from the household budget. This often involved making use of free public Wi-Fi or library internet services. Ellie’s household, for instance, spent their weekends at the public library so that she and her sister could complete their homework. While laborious, these strategies worked well for the families in everyday life. However, they would have been highly unsuitable for participating in research, particularly during the pandemic. On the most obvious level, the expectations of library use – if not silent, then certainly quiet – would have prohibited a successful interview. Further, during COVID-19 lockdowns, public libraries (and other places that provide public Internet) became inaccessible for significant periods of time. Lastly, for some research designs, the location of participants is important even when participation is occurring online. In the case of our own project, the house itself as the site of the interview was critical as our research sought to understand how the layout and materiality of the home impacts on experiences of digital inclusion. We asked participants to guide us around their home, showing where technologies and social activities are colocated. In using the data provided by the Connected Students technology kit, households with limited Internet were able to conduct interviews within their households. For these families, participating in online research would have been near impossible without the Connected Students Internet. Devices Even with adequate Internet connections, many households would have struggled to participate due to a lack of suitable devices. Laptops, which generally provide the best video conferencing experience, were seen as prohibitively expensive for many families. As a result, many families did not have a laptop or were making do with a laptop that was excessively slow, unreliable, and/or had very limited functions. Desktop computers were rare and generally outdated to the extent that they were not able to support video conferencing. One parent, Melissa, described their barely-functioning desktop as “like part of the furniture more than a computer”. Had the Connected Students program not provided a new laptop with video and audio capabilities, participation in video interviews would have been difficult. This is highlighted by the challenges students in these households faced in completing online schooling prior to receiving the Connected Students kit. A participating student, Mallory, for example, explained she had previously not had a laptop, reliant only on her phone and an old iPad: Interviewer: Were you able to do all your homework on those, or was it sometimes tricky?Mallory: Sometimes it was tricky, especially if they wanted to do a call or something ... . Then it got a bit hard because then I would use up all my data, and then didn’t have much left.Interviewer: Yeah. Right.Julia (Parent): ... But as far as schoolwork, it’s hard to do everything on an iPad. A laptop or a computer is obviously easier to manoeuvre around for different things. This example raises several common issues that would likely present barriers to research participation. First, Mallory’s household did not have a laptop before being provided with one through the Connected Students program. Second, while her household did prioritise purchasing tablets and smartphones, which could be used for video conferencing, these were more difficult to navigate for certain tasks and used up mobile data which, as noted above, was often a limited resource. Lastly, it is worth noting that in households which did already own a functioning laptop, it was often shared between several household members. As one parent, Vanessa, noted, “yeah, until we got the [Connected Students] devices, we had one laptop between the four of us that are here. And Noel had the majority use of that because that was his school work took priority”. This lack of individuated access to a device would make participation in some research designs difficult, particularly those that rely on regular access to a suitable device. Skills Despite the Connected Students program’s provision of data and device access, this did not ensure successful research participation. Many households struggled to engage with video research interviews due to insufficient digital skills. While a household with Internet connectivity might be considered on the “right” side of the digital divide, connectivity alone does not ensure participation. People also need to have the knowledge and skills required to use online resources. Brianna’s household, for example, had downloaded Microsoft Teams to their desktop computer in readiness for the interview, but had neglected to consider whether that device had video or audio capabilities. To work around this restriction, the household decided to complete the interview via the Connected Students laptop, but this too proved difficult. Neither Brianna nor her parents were confident in transferring the link to the interview between devices, whether by email or otherwise, requiring the researchers to talk them through the steps required to log on, find, and send the link via email. While Brianna’s household faced digital skills challenges that affected both parent and student participants, in others such as Ariel’s, these challenges were focussed at the parental level. In these instances, the student participant provided a vital resource, helping adults navigate platforms and participate in the research. As Celeste, Ariel’s parent, explained, it's just new things that I get a bit – like, even on here, because your email had come through to me and I said to Ariel "We're going to use your computer with Teams. How do we do this?" So, yeah, worked it out. I just had to look up my email address, but I [initially thought] oh, my god; what am I supposed to do here? Although helpful in our own research given its focus on school-aged young people, this dynamic of parents being helped by their dependents illustrates that the adults in our sample were often unfamiliar with the digital skills required for video conferencing. Research focussing only on adults, or on households in which students have not developed these skills through extended periods of online education such as occurred during the COVID-19 lockdowns, may find participants lacking the digital skills to participate in video interviews. Participation was also impacted upon by participants' lack of more subtle digital skills around the norms and conventions of video conferencing. Several households, for example, conducted their interviews in less ideal situations, such as from both moving and parked cars. A portion of the household interview with Piper’s household was completed as they drove the 30 minutes from their home into Shepperton. Due to living out of town, this household often experienced poor reception. The interview was thus regularly disrupted as they dropped in and out of range, with the interview transcript peppered with interjections such as “we’re going through a bit of an Internet light spot ... we’re back ... sorry ...” (Karina, parent). Finally, Piper switched the device on which they were taking the interview to gain a better connection: “my iPad that we were meeting on has worse Internet than my phone Internet, so we kind of changed it around” (Karina). Choosing to participate in the research from locations other than the home provides evidence of the limited time available to these families, and the onerousness of research participation. These choices also indicate unfamiliarity with video conferencing norms. As digitally excluded households, these participants were likely not the target of popular discussions throughout the pandemic about optimising video conferences through careful consideration of lighting, background, make-up and positioning (e.g. Lasky; Niven-Phillips). This was often identified by how participants positioned themselves in front of the camera, often choosing not to sit squarely within the camera lens. Sometimes this was because several household members were participating and struggled to all sit within view of the single device, but awkward camera positioning also occurred with only one or two people present. A number of interviews were initially conducted with shoulders, or foreheads, or ceilings rather than “whole” participants until we asked them to reposition the device so that the camera was pointing towards their faces. In noting this unfamiliarity we do not seek to criticise or apportion responsibility for accruing such skills to participating households, but rather to highlight the impact this had on the type of conversation between researcher and participant. Such practices offer valuable insight into how digital exclusion impacts on individual’s everyday lives as well as on their research participation. Conclusion Throughout the pandemic, digital methods such as video conferencing have been invaluable for researchers. However, while these methods have enabled fieldwork to continue despite COVID-19 disruptions, the shift to online platforms has important and under-acknowledged implications for who is and is not able to participate in research. In this article, we have drawn on our research with low-income households to demonstrate the barriers that such cohorts experience when participating in online research. Without the technology kits provided as part of our research design, these households would have struggled to participate due to a lack of adequate data and devices. Further, even with the kits provided, households faced additional barriers due to a lack of digital literacy. These experiences raise a number of questions that we encourage researchers to consider when designing methods that avoid in person interactions, and when reviewing studies that use similar approaches: who doesn’t have the technological access needed to participate in digital and online research? What are the implications of this for who and what is most visible in research conducted during the pandemic? Beyond questions of access, to what extent will disadvantaged populations not volunteer to participate in online research because of discomfort or unfamiliarity with digital tools and norms? When low-income participants are included, how can researchers ensure that participation does not unduly burden them by using up precious data resources? And, how can researchers facilitate positive and meaningful participation among those who might be less comfortable interacting through mediums like video conferencing? In raising these questions we acknowledge that not all research will or should be focussed on engaging with disadvantaged cohorts. Rather, our point is that through asking questions such as this, we will be better able to reflect on how data and participant samples are being impacted upon by shifts to digital methods during COVID-19 and beyond. As researchers, we may not always be able to adapt Zoom-based methods to be fully inclusive, but we can acknowledge this as a limitation and keep it in mind when reporting our findings, and later when engaging with the research that was largely conducted online during the pandemic. 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In this article I discuss a story told by the South Australian Ngarrindjeri Aboriginal elder, Aunty Hilda Wilson (nee Varcoe), about the time when, at not quite sixteen, she was sent from the Point Pearce Aboriginal Station to work in the Adelaide Hills, some 500 kilometres away, as a housekeeper for “one of Adelaide’s leading doctors”. Her secondment was part of a widespread practice in early and mid-twentieth century Australia of placing young Aboriginal women “of marriageable age” from missions and government reserves into domestic service. Consciously deploying Indigenous storytelling practices as pedagogy, Hilda Wilson recounted this episode in a number of distinct ways during the late 1990s and early 2000s. Across these iterations, each building on the other, she exhibited a personal resilience in her subjectivity, embedded in Indigenous knowledge systems of relationality, kin and work, which informed her agency and determination in a challenging situation in which she was both caring for a white socially-privileged family of five, while simultaneously grappling with the injustices of a state system of segregated indentured labour. Kirmayer and colleagues propose that “notions of resilience emerging from developmental psychology and psychiatry in recent years address the distinctive cultures, geographic and social settings, and histories of adversity of indigenous peoples”. Resilience is understood here as an ability to actively engage with traumatic change, involving the capacity to absorb stress and to transform in order to cope with it (Luthar et al.). Further to this, in an Indigenous context, Marion Kickett has found the capacity for resilience to be supported by three key factors: family connections, culture and belonging as well as notions of identity and history. In exploring the layers of this autobiographical story, I employ this extended psychological notion of resilience in both a domestic ambit as well as the broader social context for Indigenous people surviving a system of external domination. Additionally I consider the resilience Aunty Hilda demonstrates at a pivotal interlude between girlhood and womanhood within the trajectory of her overall long and productive life, and within an intergenerational history of resistance and accommodation. What is especially important about her storytelling is its refusal to be contained by the imaginary of the settler nation and its generic Aboriginal-female subject. She refuses victimhood while at the same time illuminating the mechanisms of injustice, hinting also at possibilities for alternative and more equitable relationships of family and work across cultural divides. Considered through this prism, resilience is, I suggest, also a quality firmly connected to ideas of Aboriginal cultural-sovereignty and standpoint and to, what Victoria Grieves has identified as, the Aboriginal knowledge value of sharing (25, 28, 45). Storytelling as Pedagogy The story I discuss was verbally recounted in a manner that Westphalen describes as “a continuation of Dreaming Stories”, functioning to educate and connect people and country (13-14). As MacGill et al. note, “the critical and transformative aspects of decolonising pedagogies emerge from storytelling and involve the gift of narrative and the enactment of reciprocity that occurs between the listener and the storyteller.” Hilda told me that as a child she was taught not to ask questions when listening to the stories of an Elder, and her own children were raised in this manner. Hilda's oldest daughter described this as a process involving patience, intrigue and surprise (Elva Wanganeen). Narratives unfold through nuance and repetition in a complexity of layers that can generate multiple levels of meaning over time. Circularity and recursivity underlie this pedagogy through which mnemonic devices are built so that stories become re-membered and inscribed on the body of the listener. When a perceived level of knowledge-transference has occurred, a narrator may elect to elaborate further, adding another detail that will often transform the story’s social, cultural, moral or political context. Such carefully chosen additional detail, however, might re-contextualise all that has gone before. As well as being embodied, stories are also emplaced, and thus most appropriately told in the Country where events occurred. (Here I use the Aboriginal English term “Country” which encompasses home, clan estate, and the powerful complex of spiritual, animate and inanimate forces that bind people and place.) Hilda Wilson’s following account of her first job as a housekeeper for “one of Adelaide’s leading doctors”, Dr Frank Swann, provides an illustration of how she expertly uses traditional narrative forms of incrementally structured knowledge transmission within a cross-cultural setting to tell a story that expresses practices of resilience as resistance and transformation at its core. A “White Doctor” Story: The First Layer Aunty Hilda first told me this story when we were winding along the South Eastern Freeway through the Adelaide hills between Murray Bridge and Mount Barker, in 1997, on our way home to Adelaide from a trip to Camp Coorong, the Ngarrindjeri cultural education centre co-founded by her granddaughter. She was then 86 years old. Ahead of us, the profile of Mt Lofty rose out of the plains and into view. The highest peak in the Mount Lofty ranges, Yurrebilla, as it is known to Kaurna Aboriginal people, or Mt Lofty, has been an affluent enclave of white settlement for Adelaide’s moneyed elite since early colonial times. Being in place, or in view of place, provided the appropriate opportunity for her to tell me the story. It belongs to a group of stories that during our initial period of working together changed little over time until one day two years later she an added contextual detail which turned it inside out. Hilda described the doctor’s spacious hill-top residence, and her responsibilities of caring for Dr Swann’s invalid wife (“an hysteric who couldn't do anything for herself”), their twin teenage boys (who attended private college in the city) along with another son and younger daughter living at home (pers. com. Hilda Wilson). Recalling the exhilaration of looking down over the sparkling lights of Adelaide at night from this position of apparent “privilege” on the summit, she related this undeniably as a success story, justifiably taking great pride in her achievements as a teenager, capable of stepping into the place of the non-Indigenous doctor's wife in running the large and demanding household. Successfully undertaking a wide range of duties employed in the care of a family, including the disabled mother, she is an active participant crucial to the lives of all in the household, including to the work of the doctor and the twin boys in private education. Hilda recalled that Mrs Swann was unable to eat without her assistance. As the oldest daughter of a large family Hilda had previously assisted in caring for her younger siblings. Told in this way, her account collapses social distinctions, delineating a shared social and physical space, drawing its analytic frame from an Indigenous ethos of subjectivity, relationality, reciprocity and care. Moreover Hilda’s narrative of domestic service demonstrates an assertion of agency that resists colonial and patriarchal hegemony and inverts the master/mistress-servant relationship, one she firmly eschews in favour of the self-affirming role of the lady of the house. (It stands in contrast to the abuse found in other accounts for example Read, Tucker, Kartinyeri. Often the key difference was a continuity of family connections and ongoing family support.) Indeed the home transformed into a largely feminised and cross-culturalised space in which she had considerable agency and responsibility when the doctor was absent. Hilda told me this story several times in much the same way during our frequent encounters over the next two years. Each telling revealed further details that fleshed a perspective gained from what Patricia Hill Collins terms an “epistemic privilege” via her “outsider-within status” of working within a white household, lending an understanding of its social mechanisms (12-15). She also stressed the extent of her duty of care in upholding the family’s well-being, despite the work at times being too burdensome. The Second Version: Coming to Terms with Intersecting Oppressions Later, as our relationship developed and deepened, when I began to record her life-narrative as part of my doctoral work, she added an unexpected detail that altered its context completely: It was all right except I slept outside in a tin shed and it was very cold at night. Mount Lofty, by far the coldest part of Adelaide, frequently experiences winter maximum temperatures of two or three degrees and often light snowfalls. This skilful reframing draws on Indigenous storytelling pedagogy and is expressly used to invite reflexivity, opening questions that move the listener from the personal to the public realm in which domestic service and the hegemony of the home are pivotal in coming to terms with the overlapping historical oppressions of class, gender, race and nation. Suddenly we witness her subjectivity starkly shift from one self-defined and allied with an equal power relationship – or even of dependency reversal cast as “de-facto doctor's wife” – to one diminished by inequity and power imbalance in the outsider-defined role of “mistreated servant”. The latter was signalled by the dramatic addition of a single signifying detail as a decoding device to a deeper layer of meaning. In this parallel stratum of the story, Hilda purposefully brings into relief the politics in which “the private domain of women's housework intersected with the public domain of governmental social engineering policies” (Haskins 4). As Aileen Moreton-Robinson points out, what for White Australia was cheap labour and a civilising mission, for Indigenous women constituted stolen children and slavery. Protection and then assimilation were government policies under which Indigenous women grew up. (96) Hilda was sent away from her family to work in 1927 by the universally-feared Sister Pearl McKenzie, a nurse who too-zealously (Katinyeri, Ngarrindjeri Calling, 23) oversaw the Chief Protector’s policies of “training” Aboriginal children from the South Australian missions in white homes once they reached fourteen (Haebich, 316—20). Indeed many prominent Adelaide hills’ families benefited from Aboriginal labour under this arrangement. Hilda explained her struggle with the immense cultural dislocation that removal into domestic service entailed, a removal her grandfather William Rankine had travelled from Raukkan to Government House to protest against less than a decade earlier (The Register December 21, 1923). This additional layer of story also illuminates Hilda’s capacity for resilience and persistence in finding a way forward through the challenge of her circumstances (Luthar et al.), drawing on her family networks and sense of personhood (Kickett). Hilda related that her father visited her at Mount Lofty twice, though briefly, on his way to shearing jobs in the south-east of the state. “He said it was no good me living like this,” she stated. Through his active intervention, reinforcement was requested and another teenager from Point Pearce, Hilda’s future husband’s cousin, Annie Sansbury, soon arrived to share the workload. But, Hilda explained, the onerous expectations coupled with the cultural segregation of retiring to the tin shed quickly became too much for Annie, who stayed only three months, leaving Hilda coping again alone, until her father applied additional pressure for a more suitable placement to be found for his daughter. In her next position, working for the family of a racehorse trainer, Hilda contentedly shared the bedroom with the small boy for whom she cared, and not long after returned to Point Pearce where she married Robert Wilson and began a family of her own. Gendered Resilience across Cultural Divides Hilda explicitly speaks into these spaces to educate me, because all but a few white women involved have remained silent about their complicity with state sanctioned practices which exploited Indigenous labour and removed children from their families through the policies of protection and assimilation. For Indigenous women, speaking out was often fraught with the danger of a deeper removal from family and Country, even of disappearance. Victoria Haskins writes extensively of two cases in New South Wales where young Aboriginal women whose protests concerning their brutal treatment at the hands of white employers, resulted in their wrongful and prolonged committal to mental health and other institutions (147-52, 228-39). In the indentured service of Indigenous women it is possible to see oppression operating through Eurocentric ideologies of race, class and gender, in which Indigenous women were assumed to take on, through displacement, the more oppressed role of white women in pre-second world war non-Aboriginal Australian society. The troubling silent shadow-figure of the “doctor’s wife” indeed provides a haunting symbol of - and also a forceful rebellion against – the docile upper middle-class white femininity of the inter-war era. Susan Bordo has argued that that “the hysteric” is archetypal of a discourse of ‘pathology as embodied protest’ in which the body may […] be viewed as a surface on which conventional constructions of femininity are exposed starkly to view in extreme or hyperliteral form. (20) Mrs Swann’s vulnerability contrasts markedly with the strength Hilda expresses in coping with a large family, emanating from a history of equitable gender relations characteristic of Ngarrindjeri society (Bell). The intersection of race and gender, as Marcia Langton contends “continues to require deconstruction to allow us to decolonise our consciousness” (54). From Hilda’s brief description one grasps a relationship resonant with that between the protagonists in Tracy Moffat's Night Cries, (a response to the overt maternalism in the film Jedda) in which the white mother finds herself utterly reliant on her “adopted” Aboriginal daughter at the end of her life (46-7). Resilience and Survival The different versions of story Hilda deploys, provide a pedagogical basis to understanding the broader socio-political framework of her overall life narrative in which an ability to draw on the cultural continuity of the past to transform the future forms an underlying dynamic. This demonstrated capacity to meet the challenging conditions thrown up by the settler-colonial state has its foundations in the connectivity and cultural strength sustained generationally in her family. Resilience moves from being individually to socially determined, as in Kickett’s model. During the onslaught of dispossession, following South Australia’s 1836 colonial invasion, Ngarrindjeri were left near-starving and decimated from introduced diseases. Pullume (c1808-1888), the rupuli (elected leader of the Ngarrindjeri Tendi, or parliament), Hilda’s third generation great-grandfather, decisively steered his people through the traumatic changes, eventually negotiating a middle-path after the Point McLeay Mission was established on Ngarrindjeri country in 1859 (Jenkin, 59). Pullume’s granddaughter, the accomplished, independent-thinking Ellen Sumner (1842—1925), played an influential educative role during Hilda’s youth. Like other Ngarrindjeri women in her lineage, Ellen Sumner was skilled in putari practice (female doctor) and midwifery culture that extended to a duty of care concerning women and children (teaching her “what to do and what not to do”), which I suggest is something Hilda herself drew from when working with the Swann family. Hilda’s mother and aunties continued aspects of the putari tradition, attending births and giving instruction to women in the community (Bell, 171, Hughes Grandmother, 52-4). As mentioned earlier, when the South Australian government moved to introduce The Training of Children Act (SA) Hilda’s maternal grandfather William Rankine campaigned vigorously against this, taking a petition to the SA Governor in December 1923 (Haebich, 315-19). As with Aunty Hilda, William Rankine used storytelling as a method to draw public attention to the inequities of his times in an interview with The Register which drew on his life-narrative (Hughes, My Grandmother, 61). Hilda’s father Wilfred Varcoe, a Barngarrla-Wirrungu man, almost a thousand kilometres away from his Poonindie birthplace, resisted assimilation by actively pursuing traditional knowledge networks using his mobility as a highly sought after shearer to link up with related Elders in the shearing camps, (and as we saw to inspect the conditions his daughter was working under at Mt Lofty). The period Hilda spent as a servant to white families to be trained in white ways was in fact only a brief interlude in a long life in which family connections, culture and belonging (Kickett) served as the backbone of her resilience and resistance. On returning to the Point Pearce Mission, Hilda successfully raised a large family and activated a range of community initiatives that fostered well-being. In the 1960s she moved to Adelaide, initially as the sole provider of her family (her husband later followed), to give her younger children better educational opportunities. Working with Aunty Gladys Elphick OBE through the Council of Aboriginal Women, she played a foundational role in assisting other Aboriginal women establish their families in the city (Mattingly et al., 154, Fisher). In Adelaide, Aunty Hilda became an influential, much loved Elder, living in good health to the age of ninety-six years. The ability to survive changing circumstances, to extend care over and over to her children and Elders along with qualities of leadership, determination, agency and resilience have passed down through her family, several of whom have become successful in public life. These include her great-grandson and former AFL football player, Michael O’Loughlin, her great-nephew Adam Goodes and her-grand-daughter, the cultural weaver Aunty Ellen Trevorrow. Arguably, resilience contributes to physical as well as cultural longevity, through caring for the self and others. Conclusion This story demonstrates how sociocultural dimensions of resilience are contextualised in practices of everyday lives. We see this in the way that Aunty Hilda Wilson’s self-narrated story resolutely defies attempts to know, subjugate and categorise, operating instead in accord with distinctively Aboriginal expressions of gender and kinship relations that constitute an Aboriginal sovereignty. Her storytelling activates a revision of collective history in ways that valorise Indigenous identity (Kirmayer et al.). Her narrative of agency and personal achievement, one that has sustained her through life, interacts with the larger narrative of state-endorsed exploitation, diffusing its power and exposing it to wider moral scrutiny. Resilience in this context is inextricably entwined with practices of cultural survival and resistance developed in response to the introduction of government policies and the encroachment of settlers and their world. We see resilience too operating across Hilda Wilson’s family history, and throughout her long life. The agency and strategies displayed suggest alternative realities and imagine other, usually more equitable, possible worlds. References Bell, Diane. Ngarrindjeri Wurruwarrin: A World That Is, Was and Will Be. Melbourne: Spinifex, 1998. Bordo, Susan. “The Body and the Reproduction of Femininity.” Writing on the Body: Female Embodiment and Feminist Theory. Eds. Katie Conboy, Nadia Medina, and Sarah Stanbury. New York: Columbia UP, 1997. 90-110. Collins, Patricia Hill. Black Feminist Thought. New York: Routledge, 2000. Fisher, Elizabeth M. "Elphick, Gladys (1904–1988)." Australian Dictionary of Biography. National Centre of Biography, Australian National University, 29 Sep. 2013. ‹http://adb.anu.edu.au/biography/elphick-gladys-12460/text22411>. Grieves, Victoria. Aboriginal Spirituality: Aboriginal Philosophy, The Basis of Aboriginal Social and Emotional Wellbeing, Melbourne University: Cooperative Research Centre for Aboriginal Health, 2009. Haebich, Anna. Broken Circles: The Fragmenting of Indigenous Families. Fremantle: Fremantle Arts Press, 2000. Haskins, Victoria. My One Bright Spot. London: Palgrave, 2005. Hughes, Karen. "My Grandmother on the Other Side of the Lake." PhD thesis, Department of Australian Studies and Department of History, Flinders University. Adelaide, 2009. ———. “Microhistories and Things That Matter.” Australian Feminist Studies 27.73 (2012): 269-278. ———. “I’d Grown Up as a Child amongst Natives.” Outskirts: Feminisms along the Edge 28 (2013). 29 Sep. 2013 ‹http://www.outskirts.arts.uwa.edu.au/volumes/volume-28/karen-hughes>. Jenkin, Graham. Conquest of the Ngarrindjeri. Adelaide: Rigby, 1979. Kartinyeri, Doris. Kick the Tin. Melbourne: Spinifex, 2000. Kartinyeri, Doreen. My Ngarrindjeri Calling, Adelaide: Wakefield, 2007. Kickett, Marion. “Examination of How a Culturally Appropriate Definition of Resilience Affects the Physical and Mental Health of Aboriginal People.” PhD thesis, Curtin University, 2012. Kirmayer, L.J., S. Dandeneau, E. Marshall, M.K. Phillips, K. Jenssen Williamson. “Rethinking Resilience from Indigenous Perspectives.” Canadian Journal of Psychiatry 56.2 (2011): 84-91. Luthar, S., D. Cicchetti, and B. Becker. “The Construct of Resilience: A Critical Evaluation and Guidelines for Future Work.” Child Development 71.3 (2000): 543-62. MacGill, Bindi, Julie Mathews, Ellen Trevorrow, Alice Abdulla, and Deb Rankine. “Ecology, Ontology, and Pedagogy at Camp Coorong,” M/C Journal 15.3 (2012). Mattingly, Christobel, and Ken Hampton. Survival in Our Own Land, Adelaide: Wakefield, 1988. Moreton-Robinson, Aileen. Talkin’ Up to the White Woman. St Lucia: UQP, 2000. Night Cries, A Rural Tragedy. Dir. Tracy Moffatt. Chili Films, 1990. Read, Peter. A Rape of the Soul So Profound. Crows Nest: Allen & Unwin, 2002. Tucker, Margaret. If Everyone Cared. Sydney: Ure Smith, 1977. Wanganeen, Elva. Personal Communication, 2000. Westphalen, Linda. An Anthropological and Literary Study of Two Aboriginal Women's Life Histories: The Impacts of Enforced Child Removal and Policies of Assimilation. New York: Mellen Press, 2011.

In this paper we explore the rise of anti-gambling apps in the context of the massive expansion of gambling in new spheres of life (online and offline) and an acceleration in strategies of anticipatory and individualised management of harm caused by gambling. These apps, and the techniques and forms of labour they demand, are examples of and a mechanism through which a mode of governance premised on ‘self-care’ and ‘self-control’ is articulated and put into practice. To support this argument, we explore two government initiatives in the Australian context. Quit Pokies, a mobile app project between the Moreland City Council, North East Primary Care Partnership and the Victorian Local Governance Association, is an example of an emerging service paradigm of ‘self-care’ that uses online and mobile platforms with geo-location to deliver real time health and support interventions. A similar mobile app, Gambling Terminator, was launched by the NSW government in late 2012. Both apps work on the premise that interrupting a gaming session through a trigger, described by Quit Pokies’ creator as a “tap on the shoulder” provides gamblers the opportunity to take a reflexive stance and cut short their gambling practice in the course of play. We critically examine these apps as self-disciplining techniques of contemporary neo-liberalism directed towards anticipating and reducing the personal harm and social risk associated with gambling. We analyse the material and discursive elements, and new forms of user labour, through which this consumable media is framed and assembled. We argue that understanding the role of these apps, and mobile media more generally, in generating new techniques and technologies of the self, is important for identifying emerging modes of governance and their implications at a time when gambling is going through an immense period of cultural normalisation in online and offline environments. The Australian context is particularly germane for the way gambling permeates everyday spaces of sociality and leisure, and the potential of gambling interventions to interrupt and re-configure these spaces and institute a new kind of subject-state relation. Gambling in Australia Though a global phenomenon, the growth and expansion of gambling manifests distinctly in Australia because of its long cultural and historical attachment to games of chance. Australians are among the biggest betters and losers in the world (Ziolkowski), mainly on Electronic Gaming Machines (EGM) or pokies. As of 2013, according to The World Count of Gaming Machine (Ziolkowski), there were 198,150 EGMs in the country, of which 197,274 were slot machines, with the rest being electronic table games of roulette, blackjack and poker. There are 118 persons per machine in Australia. New South Wales is the jurisdiction with most EGMs (95,799), followed by Queensland (46,680) and Victoria (28,758) (Ziolkowski). Gambling is significant in Australian cultural history and average Australian households spend at least some money on different forms of gambling, from pokies to scratch cards, every year (Worthington et al.). In 1985, long-time gambling researcher Geoffrey Caldwell stated thatAustralians seem to take a pride in the belief that we are a nation of gamblers. Thus we do not appear to be ashamed of our gambling instincts, habits and practices. Gambling is regarded by most Australians as a normal, everyday practice in contrast to the view that gambling is a sinful activity which weakens the moral fibre of the individual and the community. (Caldwell 18) The omnipresence of gambling opportunities in most Australian states has been further facilitated by the availability of online and mobile gambling and gambling-like spaces. Social casino apps, for instance, are widely popular in Australia. The slots social casino app Slotomania was the most downloaded product in the iTunes store in 2012 (Metherell). In response to the high rate of different forms of gambling in Australia, a range of disparate interest groups have identified the expansion of gambling as a concerning trend. Health researchers have pointed out that online gamblers have a higher risk of experiencing problems with gambling (at 30%) compared to 15% in offline bettors (Hastings). The incidence of gambling problems is also disproportionately high in specific vulnerable demographics, including university students (Cervini), young adults prone to substance abuse problems (Hayatbakhsh et al.), migrants (Tanasornnarong et al.; Scull & Woolcock; Ohtsuka & Ohtsuka), pensioners (Hing & Breen), female players (Lee), Aboriginal communities (Young et al.; McMillen & Donnelly) and individuals experiencing homelessness (Holsworth et al.). While there is general recognition of the personal and public health impacts of gambling in Australia, there is a contradiction in the approach to gambling at a governance level. On one hand, its expansion is promoted and even encouraged by the federal and state governments, as gambling is an enormous source of revenue, as evidenced, for example, by the construction of the new Crown casino in Barangaroo in Sydney (Markham & Young). Campaigns trying to limit the use of poker machines, which are associated with concerns over problem gambling and addiction, are deemed by the gambling lobby as un-Australian. Paradoxically, efforts to restrict gambling or control gambling winnings have also been described as un-Australian, such as in the Australian Taxation Office’s campaign against MONA’s founder, David Walsh, whose immense art collection was acquired with the funds from a gambling scheme (Global Mail). On the other hand, people experiencing problems with gambling are often categorised as addicts and the ultimate blame (and responsibility) is attributed to the individual. In Australia, attitudes towards people who are arguably addicted to gambling are different than those towards individuals afflicted by alcohol or drug abuse (Jean). While “Australians tend to be sympathetic towards people with alcohol and other drug addictions who seek help,” unless it is seen as one of the more socially acceptable forms of occasional, controlled gambling (such as sports betting, gambling on the Melbourne Cup or celebrating ANZAC Day with Two-Up), gambling is framed as an individual “problem” and “moral failing” (Jean). The expansion of gambling is the backdrop to another development in health care and public health discourse, which have for some time now been devoted to the ideal of what Lupton has called the “digitally engaged patient” (Lupton). Technologies are central to the delivery of this model of health service provision that puts the patient at the centre of, and responsible for, their own health and medical care. Lupton has pointed out how this discourse, while appearing new, is in fact the latest version of the 1970s emphasis on the ‘patient as consumer’, an idea given an extra injection by the massive development and availability of digital and interactive web-based and mobile platforms, many of these directed towards the provision of health and health-related information and services. What this means for patients is that, rather than relying solely on professional medical expertise and care, the patient is encouraged to take on some of this medical/health work to conduct practices of ‘self-care’ (Lupton). The Discourse of ‘Self-Management’ and ‘Self-Care’ The model of ‘self-care’ and ‘self-management’ by ‘empowering’ digital technology has now become a dominant discourse within health and medicine, and is increasingly deployed across a range of related sectors such as welfare services. In recent research conducted on homelessness and mobile media, for example, government department staff involved in the reform of welfare services referred to ‘self-management’ as the new service paradigm that underpins their digital reform strategy. Echoing ideas and language similar to the “digitally engaged patient”, customers of Centrelink, Medicare and other ‘human services’ are being encouraged (through planned strategic initiatives aimed at shifting targeted customer groups online) to transact with government services digitally and manage their own personal profiles and health information. One departmental staff member described this in terms of an “opportunity cost”, the savings in time otherwise spent standing in long queues in service centres (Humphry). Rather than view these examples as isolated incidents taking place within or across sectors or disciplines, these are better understood as features of an emerging ‘discursive formation’ , a term Foucault used to describe the way in which particular institutions and/or the state establish a regime of truth, or an accepted social reality and which gives definition to a new historical episteme and subject: in this case that of the self-disciplined and “digitally engaged medical/health patient”. As Foucault explained, once this subject has become fully integrated into and across the social field, it is no longer easy to excavate, since it lies below the surface of articulation and is held together through everyday actions, habits and institutional routines and techniques that appear to be universal, necessary and/normal. The way in which this citizen subject becomes a universal model and norm, however, is not a straightforward or linear story and since we are in the midst of its rise, is not a story with a foretold conclusion. Nevertheless, across a range of different fields of governance: medicine; health and welfare, we can see signs of this emerging figure of the self-caring “digitally engaged patient” constituted from a range of different techniques and practices of self-governance. In Australia, this figure is at the centre of a concerted strategy of service digitisation involving a number of cross sector initiatives such as Australia’s National EHealth Strategy (2008), the National Digital Economy Strategy (2011) and the Australian Public Service Mobile Roadmap (2013). This figure of the self-caring “digitally engaged” patient, aligns well and is entirely compatible with neo-liberal formulations of the individual and the reduced role of the state as a provider of welfare and care. Berry refers to Foucault’s definition of neoliberalism as outlined in his lectures to the College de France as a “particular form of post-welfare state politics in which the state essentially outsources the responsibility of the ‘well-being' of the population” (65). In the case of gambling, the neoliberal defined state enables the wedding of two seemingly contradictory stances: promoting gambling as a major source of revenue and capitalisation on the one hand, and identifying and treating gambling addiction as an individual pursuit and potential risk on the other. Risk avoidance strategies are focused on particular groups of people who are targeted for self-treatment to avoid the harm of gambling addiction, which is similarly framed as individual rather than socially and systematically produced. What unites and makes possible this alignment of neoliberalism and the new “digitally engaged subject/patient” is first and foremost, the construction of a subject in a chronic state of ill health. This figure is positioned as terminal from the start. They are ‘sick’, a ‘patient’, an ‘addict’: in need of immediate and continuous treatment. Secondly, this neoliberal patient/addict is enabled (we could even go so far as to say ‘empowered’) by digital technology, especially smartphones and the apps available through these devices in the form of a myriad of applications for intervening and treating ones afflictions. These apps range fromself-tracking programs such as mood regulators through to social media interventions. Anti-Pokie Apps and the Neoliberal Gambler We now turn to two examples which illustrate this alignment between neoliberalism and the new “digitally engaged subject/patient” in relation to gambling. Anti-gambling apps function to both replace or ‘take the place’ of institutions and individuals actively involved in the treatment of problem gambling and re-engineer this service through the logics of ‘self-care’ and ‘self-management’. Here, we depart somewhat from Foucault’s model of disciplinary power summed up in the institution (with the prison exemplifying this disciplinary logic) and move towards Deleuze’s understanding of power as exerted by the State not through enclosures but through diffuse and rhizomatic information flows and technologies (Deleuze). At the same time, we retain Foucault’s attention to the role and agency of the user in this power-dynamic, identifiable in the technics of self-regulation and in his ideas on governmentality. We now turn to analyse these apps more closely, and explore the way in which these articulate and perform these disciplinary logics. The app Quit Pokies was a joint venture of the North East Primary Care Partnership, the Victorian Local Governance Association and the Moreland City Council, launched in early 2014. The idea of the rational, self-reflexive and agentic user is evident in the description of the app by app developer Susan Rennie who described it this way: What they need is for someone to tap them on the shoulder and tell them to get out of there… I thought the phone could be that tap on the shoulder. The “tap on the shoulder” feature uses geolocation and works by emitting a sound alert when the user enters a gaming venue. It also provides information about each user’s losses at that venue. This “tap on the shoulder” is both an alert and a reprimand from past gambling sessions. Through the Responsible Gambling Fund, the NSW government also launched an anti-pokie app in 2013, Gambling Terminator, including a similar feature. The app runs on Apple and Android smartphone platforms, and when a person is inside a gambling venue in New South Wales it: sends reminder messages that interrupt gaming-machine play and gives you a chance to re-think your choices. It also provides instant access to live phone and online counselling services which operate 24 hours a day, seven days a week. (Google Play Store) Yet an approach that tries to prevent harm by anticipating the harm that will come from gambling at the point of entering a venue, also eliminates the chance of potential negotiations and encounters a user might have during a visit to the pub and how this experience will unfold. It reduces the “tap on the shoulder”, which may involve a far wider set of interactions and affects, to a software operation and it frames the pub or the club (which under some conditions functions as hubs for socialization and community building) as dangerous places that should be avoided. This has the potential to lead to further stigmatisation of gamblers, their isolation and their exclusion from everyday spaces. Moreland Mayor, Councillor Tapinos captures the implicit framing of self-care as a private act in his explanation of the app as a method for problem gamblers to avoid being stigmatised by, for example, publicly attending group meetings. Yet, curiously, the app has the potential to create a new kind of public stigmatisation through potentially drawing other peoples’ attention to users’ gambling play (as the alarm is triggered) generating embarrassment and humiliation at being “caught out” in an act framed as aberrant and literally, “alarming”. Both Quit Pokies and Gambling Terminator require their users to perform ‘acts’ of physical and affective labour aimed at behaviour change and developing the skills of self-control. After downloading Quit Pokies on the iPhone and launching the app, the user is presented an initial request: “Before you set up this app. please write a list of the pokies venues that you regularly use because the app will ask you to identify these venues so it can send you alerts if you spend time in these locations. It will also use your set up location to identify other venues you might use so we recommend that you set up the App in the location where you spend most time. Congratulation on choosing Quit Pokies.”Self-performed processes include installation, setting up, updating the app software, programming in gambling venues to be detected by the smartphone’s inbuilt GPS, monitoring and responding to the program’s alerts and engaging in alternate “legitimate” forms of leisure such as going to the movies or the library, having coffee with a friend or browsing Facebook. These self-performed labours can be understood as ‘technologies of the self’, a term used by Foucault to describe the way in which social members are obliged to regulate and police their ‘selves’ through a range of different techniques. While Foucault traces the origins of ‘technologies of the self’ to the Greco-Roman texts with their emphasis on “care of oneself” as one of the duties of citizenry, he notes the shift to “self-knowledge” under Christianity around the 8th century, where it became bound up in ideals of self-renunciation and truth. Quit Pokies and Gambling Terminator may signal a recuperation of the ideal of self-care, over confession and disclosure. These apps institute a set of bodily activities and obligations directed to the user’s health and wellbeing, aided through activities of self-examination such as charting your recovery through a Recovery Diary and implementing a number of suggested “Strategies for Change” such as “writing a list” and “learning about ways to manage your money better”. Writing is central to the acts of self-examination. As Jeremy Prangnell, gambling counsellor from Mission Australia for Wollongong and Shellharbour regions explained the app is “like an electronic diary, which is a really common tool for people who are trying to change their behaviour” (Thompson). The labours required by users are also implicated in the functionality and performance of the platform itself suggesting the way in which ‘technologies of the self’ simultaneously function as a form of platform work: user labour that supports and sustains the operation of digital systems and is central to the performance and continuation of digital capitalism in general (Humphry, Demanding Media). In addition to the acts of labour performed on the self and platform, bodies are themselves potentially mobilised (and put into new circuits of consumption and production), as a result of triggers to nudge users away from gambling venues, towards a range of other cultural practices in alternative social spaces considered to be more legitimate.Conclusion Whether or not these technological interventions are effective or successful is yet to be tested. Indeed, the lack of recent activity in the community forums and preponderance of issues reported on installation and use suggests otherwise, pointing to a need for more empirical research into these developments. Regardless, what we’ve tried to identify is the way in which apps such as these embody a new kind of subject-state relation that emphasises self-control of gambling harm and hastens the divestment of institutional and social responsibility at a time when gambling is going through an immense period of expansion in many respects backed by and sanctioned by the state. Patterns of smartphone take up in the mainstream population and the rise of the so called ‘mobile only population’ (ACMA) provide support for this new subject and service paradigm and are often cited as the rationale for digital service reform (APSMR). Media convergence feeds into these dynamics: service delivery becomes the new frontier for the merging of previously separate media distribution systems (Dwyer). Letters, customer service centres, face-to-face meetings and web sites, are combined and in some instances replaced, with online and mobile media platforms, accessible from multiple and mobile devices. These changes are not, however, simply the migration of services to a digital medium with little effective change to the service itself. Health and medical services are re-invented through their technological re-assemblage, bringing into play new meanings, practices and negotiations among the state, industry and neoliberal subjects (in the case of problem gambling apps, a new subjectivity, the ‘neoliberal addict’). These new assemblages are as much about bringing forth a new kind of subject and mode of governance, as they are a solution to problem gambling. This figure of the self-treating “gambler addict” can be seen to be a template for, and prototype of, a more generalised and universalised self-governing citizen: one that no longer needs or makes demands on the state but who can help themselves and manage their own harm. Paradoxically, there is the potential for new risks and harms to the very same users that accompanies this shift: their outright exclusion as a result of deprivation from basic and assumed digital access and literacy, the further stigmatisation of gamblers, the elimination of opportunities for proximal support and their exclusion from everyday spaces. References Albarrán-Torres, César. “Gambling-Machines and the Automation of Desire.” Platform: Journal of Media and Communication 5.1 (2013). Australian Communications and Media Authority. “Australians Cut the Cord.” Research Snapshots. Sydney: ACMA (2013) Berry, David. Critical Theory and the Digital. Broadway, New York: Bloomsbury Academic, 2014 Berry, David. Stunlaw: A Critical Review of Politics, Arts and Technology. 2012. ‹http://stunlaw.blogspot.com.au/2012/03/code-foucault-and-neoliberal.html›. Caldwell, G. “Some Historical and Sociological Characteristics of Australian Gambling.” Gambling in Australia. Eds. G. Caldwell, B. Haig, M. Dickerson, and L. Sylan. Sydney: Croom Helm Australia, 1985. 18-27. Cervini, E. “High Stakes for Gambling Students.” The Age 8 Nov. 2013. ‹http://www.theage.com.au/national/education/high-stakes-for-gambling-students-20131108-2x5cl.html›. Deleuze, Gilles. "Postscript on the Societies of Control." October (1992): 3-7. Foucault, Michel. “Technologies of the Self.” Eds. Luther H. Martin, Huck Gutman and Patrick H. Hutton. Boston: University of Massachusetts Press, 1988 Hastings, E. “Online Gamblers More at Risk of Addiction.” Herald Sun 13 Oct. 2013. ‹http://www.heraldsun.com.au/news/online-gamblers-more-at-risk-of-addiction/story-fni0fiyv-1226739184629#!›.Hayatbakhsh, Mohammad R., et al. "Young Adults' Gambling and Its Association with Mental Health and Substance Use Problems." Australian and New Zealand Journal of Public Health 36.2 (2012): 160-166. Hing, Nerilee, and Helen Breen. "A Profile of Gaming Machine Players in Clubs in Sydney, Australia." Journal of Gambling Studies 18.2 (2002): 185-205. Holdsworth, Louise, Margaret Tiyce, and Nerilee Hing. "Exploring the Relationship between Problem Gambling and Homelessness: Becoming and Being Homeless." Gambling Research 23.2 (2012): 39. Humphry, Justine. “Demanding Media: Platform Work and the Shaping of Work and Play.” Scan: Journal of Media Arts Culture, 10.2 (2013): 1-13. Humphry, Justine. “Homeless and Connected: Mobile Phones and the Internet in the Lives of Homeless Australians.” Australian Communications Consumer Action Network. Sep. 2014. ‹https://www.accan.org.au/grants/completed-grants/619-homeless-and-connected›.Lee, Timothy Jeonglyeol. "Distinctive Features of the Australian Gambling Industry and Problems Faced by Australian Women Gamblers." Tourism Analysis 14.6 (2009): 867-876. Lupton, D. “The Digitally Engaged Patient: Self-Monitoring and Self-Care in the Digital Health Era.” Social Theory & Health 11.3 (2013): 256-70. Markham, Francis, and Martin Young. “Packer’s Barangaroo Casino and the Inevitability of Pokies.” The Conversation 9 July 2013. ‹http://theconversation.com/packers-barangaroo-casino-and-the-inevitability-of-pokies-15892›. Markham, Francis, and Martin Young. “Who Wins from ‘Big Gambling’ in Australia?” The Conversation 6 Mar. 2014. ‹http://theconversation.com/who-wins-from-big-gambling-in-australia-22930›.McMillen, Jan, and Katie Donnelly. "Gambling in Australian Indigenous Communities: The State of Play." The Australian Journal of Social Issues 43.3 (2008): 397. Ohtsuka, Keis, and Thai Ohtsuka. “Vietnamese Australian Gamblers’ Views on Luck and Winning: Universal versus Culture-Specific Schemas.” Asian Journal of Gambling Issues and Public Health 1.1 (2010): 34-46. Scull, Sue, Geoffrey Woolcock. “Problem Gambling in Non-English Speaking Background Communities in Queensland, Australia: A Qualitative Exploration.” International Gambling Studies 5.1 (2005): 29-44. Tanasornnarong, Nattaporn, Alun Jackson, and Shane Thomas. “Gambling among Young Thai People in Melbourne, Australia: An Exploratory Study.” International Gambling Studies 4.2 (2004): 189-203. Thompson, Angela, “Live Gambling Odds Tipped for the Chop.” Illawarra Mercury 22 May 2013: 6. Metherell, Mark. “Virtual Pokie App a Hit - But ‘Not Gambling.’” Sydney Morning Herald 13 Jan. 2013. ‹http://www.smh.com.au/digital-life/smartphone-apps/virtual-pokie-app-a-hit--but-not-gambling-20130112-2cmev.html#ixzz2QVlsCJs1›. Worthington, Andrew, et al. "Gambling Participation in Australia: Findings from the National Household Expenditure Survey." Review of Economics of the Household 5.2 (2007): 209-221. Young, Martin, et al. "The Changing Landscape of Indigenous Gambling in Northern Australia: Current Knowledge and Future Directions." International Gambling Studies 7.3 (2007): 327-343. Ziolkowski, S. “The World Count of Gaming Machines 2013.” Gaming Technologies Association, 2014. ‹http://www.gamingta.com/pdf/World_Count_2014.pdf›.

As a mode of open access public self-expression, blogs are one form of the unfolding massification of culture (Lovink). Though widely varied in content and style, they are characterised by a reverse chronological diary-like format, often produced by a single author, and often intimately expressive of that author’s thoughts and experiences. The purpose of this paper is to explore the use of blogs as a space for the detailed and on-going expression of the day to day experiences of sufferers of serious illness. We might traditionally consider the experience of illness as absolutely private, but illness, along with the process of recovery, retains a social and cultural aspect (Kleinman et al). A growing body of literature has recognised that the Internet has become a significant space for the recovery work that accompanies the diagnosis of serious illness (Orgad; Pitts; Hardey). Empowerment and agency are often emphasised in this literature, particularly in terms of the increased access to information and support groups, but also in the dynamic performances of self enabled by different forms of online communication and Web production. I am particularly interested in the ongoing shifts in the accessibility of “private” personal experience enabled by blog culture. Although there are thousands of others like them, three “illness blogs” have recently caught my attention for their candidness, completeness and complexity, expressing in vivid depth and detail individual lives transformed by serious illness. The late US journalist and television producer Leroy Sievers maintained a high profile blog, My Cancer, and weekly podcast on the National Public Radio website until his death from metastasised colon cancer in August 2008. Sievers used his public profile and the infrastructure of the NPR website to both detail his personal experience and bring together a community of people also affected by cancer or moved by his thoughts and experiences. The blogger Brainhell came to my attention through blogsphere comments and tributes when he died in February 2008. Spanning more than four years, Brainhell’s witty and charming blog attracted a significant audience and numerous comments, particularly toward the end of his life as the signs of his deteriorating motor system as a result of Amyotrophic Lateral Sclerosis (ALS, or “Lou Gherig’s disease”) riddled his intimate posts. Another blog of interest to me here, called Humanities Researcher, incorporates academic Stephanie Trigg’s period of illness and recovery from breast cancer within a pre-existing and ongoing blog about the intersection between professional and personal life. As I had crossed paths with Trigg while at Melbourne University, I was always interested in her blog. But her diagnosis with breast cancer and subsequent accounts of tests, the pain and debilitation of treatment and recovery within her blog also offer valuable insight into the role of online technologies in affecting experiences of illness and for the process of recovery.The subject matter of illness blogs revolves around significant personal transformations as a result of serious illness or trauma: transformations of everyday life, of body and emotional states, relationships, physical appearance, and the loss or recovery of physical ability. It is not my intention in this brief analysis to overgeneralise on the basis of some relatively limited observations. However, many blogs written in response to illness stand out for what they reveal about the shifting location or locatability of self, experience and the events of ongoing illness and thus how we can conceptualise the inherent “privacy” of illness as personal experience. Self-expression here is encompassing of the possibilities through which illness can be experienced – not as representation of that experience, a performance of a disembodied self (though these notions have their merits) – but an expressive element of the substance of the illness as it is experienced over time, as it affects the bodies, thoughts, events and relationships of individuals moving toward a state of full recovery or untimely death. Locating Oneself OnlineMany authors currently examining the role of online spaces in the lives of sufferers of serious illness see online communication as providing a means for configuring experience as a meaningful and coherent story, and thus conferring, or we could say recovering, a sense of agency amidst a tumultuous and ongoing battle with serious illness (Orgad, Pitts). In her study of breast cancer discussion forums, message boards and websites, Orgad (4) notes their role in regaining “the fundamentals disturbed by cancer” (see also Bury). Well before the emergence of online spaces, the act or writing has been seen as “a crucial affirmation of living, a statement against fearfulness, invisibility and silence” (Orgad, 67; Lorde, 61). For many decades scientists have asserted that “brief structured writing sessions can significantly improve mental and physical health for some groups of people” (Singer and Singer 485). The Internet has provided an infrastructure for bringing personal experiences of illness into the public realm, enabling a new level of visibility. Much of the work on illness and the Internet focuses on the liberatory and empowering act of story telling and “disembodied” self-expression. Discussion forums and cancer websites enable the formation of patient led “discourse communities” (Wuthnow). Online spaces such as discussion forums help their participants gain a foothold within a world they share with other sufferers, building communities of practice (Wegner) around specific forms of illness. In this way, these forms of self-expression and communication enable the sufferer of serious illness to counter the modes by which they are made “subjects”, in the Foucauldian sense, of medical discourse. All illness narratives are defined and constructed socially, and are infused with relations of power (Sontag; Foucault, Birth of the Clinic). Forms of online communication have shifted productive practice from professions to patients. Blogs, like discussion forums, websites, email lists etc., have come to play a central role in this contemporary shift. When Lovink (6) describes blogs as a “technology of the self” he points to their role in “self-fashioning”. Blogs written about and in the context of personal illness are a perfect example of this inclination to speak the truth of oneself in the confessional mode of modern culture borne of the church, science and talkshow television. For Foucault (Technologies of the Self, 17), technologies of the self: Permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct and way of being, so as to transform themselves in order to attain a state of happiness, purity, wisdom, perfection, immortality. Likewise, as a central concept for understanding Internet identity, the notion of performance (eg, Turkle) highlights the creativity with which illness bloggers may present their role as cancer patient in online spaces, perhaps as an act of resistance to “subjectifying” medical discourses and practices. Many bloggers wrest semiotic power through regular discussion of the language of pathology and medical knowledge, treatment processes and drugs. In the early stages of her treatment, Trigg plays with the new vocabulary, searching for etiologies and making her own semantic connections: I’ve learnt two new words. “Spiculated” describes the characteristic shape of a carcinoma on an ultrasound or x-ray. …The other word is at the other end of the spectrum of linguistic beauty: “lumpectomy”. It took me quite a while to realise that this was not really any different from partial mastectomy; or local excision. It’s an example of the powerful semantic connotations of words to realise that these phrases name the same processes: a long cut, and then the extraction of the diseased tissue (Humanities Researcher, 14 Oct. 2006).Partly due to the rarity of his illness, Brainhell goes through weeks of waiting for a diagnosis, and posts prolifically in an attempt to test out self-diagnoses. Amidst many serious and humorous posts analysing test results and discussing possible diagnoses Brainhell reflects on his targeted use of the blog: I am a word person. I think in sentences. I often take complex technical problems at work and describe them to myself in words. A story helps me understand things better. This blog has become a tool for me to organize my own thoughts about the Mystery Condition. (Brainhell, 6 Jan. 2004)The emancipatory potential of blog writing, however, can be easily overstated. While it is valuable to note and celebrate the performative potential of online production, and its “transformative” role as a technology of the self, it is easy to fall back on an unproblematic distinction between the actual and the virtual, the experience of illness, and its representation in online spaces. Textual expression should always refer us to the extra-textual practices that encompass it without imposing an artificial hierarchy of online and offline, actual experience and representation. As with other forms of online communication and production, the blog culture that has emerged around forms of serious illness plays a significant role in transforming our concepts of the relationship between online and offline spaces. In his My Cancer blog, Sievers often refers to “Cancer World”. He notes, for example, the many “passing friends” he makes in Cancer World through the medical staff and other regular patients at the radiation clinic, and refers to the equipment that sustains his life as the accoutrements of this world. His blog posts revolved around an articulation of the intricacies of this “world” that is in some ways a means of making sense of that world, but is also expressive of it. Sievers tries to explain the notion of Cancer World as a transformation of status between insider & outsider: “once we cross over into Cancer World, we become strangers in a strange land. What to expect, what to hope for, what to fear – none of those are clear right now” (My Cancer, 30 June 2008). Part of his struggle with the illness is also with the expression of himself as encompassed by this new “world” of the effects and activities of cancer. In a similar way, in her Humanities Researcher blog Trigg describes in beautiful detail the processes, routines and relationships formed during radiation treatment. I see these accounts of the textures of cancer spaces as lying at the point of juncture between expression and experience, not as a disembodied, emancipatory realm free from the fetters of illness and the everyday “real” self, but always encompassed by, and encompassing them, and in this way shifting what might be understood to remain “private” in personal experience and self-expression. Blogs as Public Diary Axel Bruns (171), following Matthew Rothenberg, characterises blogs as an accessible technological extension of the personal home page, gaining popularity in the late 1990s because they provided more easy to use templates and web publishing tools than earlier webpage applications. Personalised self expression is a defining element. However, the temporal quality of the reverse chronological, timestamped entry is equally significant for Bruns (171). Taking a broader focus to Bruns, who is most interested in the potential democratisation of media in news related blogs, Lovink sees the experimentation with a “public diary” format as fundamental, signalling their “productive contradiction between public and private” (Lovink 6). A diary may be written for posterity but it is primarily a secretive mode of communication. While blogs may mirror the temporal form of a diary, their intimate focus on self-expression of experience, thoughts and feelings, they do so in a very different communicative context.Despite research suggesting that a majority of bloggers report that they post primarily “for themselves” (Lenhart and Fox) – meaning that they do not deliberately seek a broad audience or readership – the step of making experiences and thoughts so widely accessible cannot be overlooked in any account of blogging. The question of audience or readership, for example, concerns Trigg in her Humanities Researcher blog: The immediacy of a blog distinguishes it from a journal or diary. I wrote for myself, of course, but also for a readership I could measure and chart and hear from, sometimes within minutes of posting. Mostly I don’t know who my readers are, but the kindness and friendship that come to me through the blog gave me courage to write about the intimacies of my treatment; and to chart the emotional upheaval it produced. (Trigg)In their ability to produce a comprehensive expression of the events, experiences, thoughts and feelings of an individual, blogs differ to other forms of online communication such as discussion forums or email lists. Illness blogs are perhaps an extreme example, an open mode of self-expression often arising abruptly in reaction to a life transforming diagnosis and tracking the process of recovery or deterioration, usually ending with remission or death. Brainhell’s blog begins with MRI results, and a series of posts about medical examination and self-examination regarding his mystery condition: So the MRI shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. …As long as you are alive and have someone to complain to, you ain’t bad off. I am alive and I am complaining about a mystery spot on my brain, and lazy limbs. (Brainhell, 24 Dec. 2003)Brainhell spent many weeks documenting his search for a diagnosis, and continued writing up to his final deterioration and death in 2008. His final posts convey his physical deterioration in truncated sentences, spelling errors and mangled words. In one post he expresses his inability to wake his caregiver and to communicate his distress and physical discomfort at having to pee: when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words: “you choose this, not me. you want to make it hard, what can i do?” (Brainhell, 13 Jan. 2008). The temporal and continuous format of the blog traverses the visceral, corporeal transformations of body and thought over time. The diary format goes beyond a straightforward narrative form in being far more experiential and even experimental in its self-reflective expression of the events of daily life, thoughts, feelings and states of being. Its public format bears directly on its role in shaping the communicative context in which that expression takes place, and thus to an extent shapes the experience of the illness itself. Nowhere does the expressive substance of the blog so fully encompass the possibilities through which the illness could be experienced than in the author’s death. At this point the blog feels like it is more than a catalogue, dialogue or self-presentation of a struggle with illness. It may take on the form of a memorial (see for example Tom’s Road to Recovery) – a recovery of the self expressed in the daily physical demise, through data maintained in the memory of servers. Ultimately the blog stands as a complex trace of the life lived within its posts. Brainhell’s lengthy blog exemplifies this quite hauntingly. Revealing the Private in Public Blogs exemplify a further step in the transformation of notions of public and private brought about by information and screen technologies. McQuire (103) refers to contemporary screen and Internet culture as “a social setting in which personal identity is subject to new exigencies”. Reality television, such as Big Brother, has promoted “a new mode for the public viewing of private life” (McQuire 114) contributing to the normalisation of open access to personal, intimate revelations, actions and experiences. However, privacy is “an elusive concept” that relates as much to information and property as to self-expression and personal experience (McCullagh). That is, what we consider private to an individual is itself constituted by our variable categories of personal information, material or immaterial possessions, or what counts as an expression of personal experience. Some analysts of online storytelling in the context of illness recognise the unsustainability of the distinction between public and private, but nonetheless rely on the notion of a continuum upon which activities or events could be considered as experienced in a public or private space (Orgad, 129-133). One of the characteristics of a blog, unlike other forms of online communication such as chat, discussion forums and email, is its predominantly public and openly accessible form. Though many illness bloggers do not seem to seek anonymity or hold back in allowing massive access to their self-expression and personal experience, a tension always seems to be there in the background. Identification through the proper name simply implies potential broader effects of blog writing, a pairing of the personal expressions with the person who expresses them in broader daily interactions and relationships. As already “public” figures, Stephanie Trigg and Leroy Sievers choose to forego anonymity, while Brainhell adopted his alias from the beginning and guarded his anonymity carefully. Each of these bloggers, however, shows signs of grappling with the public character of their site, and the interaction between the blog and their everyday life and relationships. In his etiquette page, Brainhell seems unclear about his readership, noting that his blog is for “friends and soul-mates, and complete strangers too”, but that he has not shared it with his family or all of his friends. He goes on to say: You may not have been invited but you are still welcome here. I made it public so that anyone could read it. Total strangers are welcome. Invited friends are welcome. But of those invited friends, I ask you to ask me before you out me as the blog author, or share the blog with other people who already know me. (Brainhell, 18 Feb. 2004) After his death Ratty took steps to continue to maintain his anonymity, vetting many comments and deleting others to “honor BH’s wishes as he outline in ‘Ettiquett for This Blog”’ (Brainhell, 2 Feb. 2008). In Leroy Sievers’ blog, one post exploring the conflict raised by publicly “sharing” his experiences provoked an interesting discussion. He relays a comment sent to him by a woman named Cherie: I have stage four colorectal cancer with liver mets. This is a strange journey, one I am not entirely sure I can share with my loved ones. I am scared it might rob them of the hope I see in their eyes. The hope which I sometimes don’t believe in. (My Cancer, 26 July 2006) Sievers struggles with this question: “How do you balance the need to talk about what is happening to you with the tears of a close friend when you tell him or her the truth? There’s no simple answer.” The blog, in this sense, seems to offer a more legitimate space for the ongoing, detailed expression of these difficult and affective, and traditionally private experiences. In some posts the privacy of the body and bodily experiences is directly challenged or re-negotiated. Stephanie Trigg was concerned with the effect of the blog on her interactions with colleagues. But another interesting dilemma presents itself to her when she is describing the physical effects of cancer, surgery and radiation treatment on her breast, and forces herself to hold back from comparing with the healthy breast: “it's not a medical breast, so I can't write about it here” (Humanities Researcher, 10 Jan. 2007). One prostate cancer blogger, identified as rdavisjr, seems to have no difficulties expressing the details of a physical intrusion on his “privacy” in the far more open forum of his blog: The pull-around ceiling mounted screen was missing (laundry?), so Kelly was called into the room and told to make a screen with a bed sheet. So here I am with one woman sticking her finger up my ass, while another woman is standing in front of the door holding an outstretched bed sheet under her chin (guess she wanted a view!)The screen was necessary to ensure my privacy in the event someone accidentally came into the room, something they said was a common thing. Well, Kelly peering over that sheet was hardly one of my more private moments in life! (Prostate Cancer Journal, 23 Feb. 2001). ConclusionWhatever emancipatory benefits may be found in expressing the most intimate of experiences and events of a serious illness online, it is the creative act of the blog as self-expression here, in its visceral, comprehensive, continuous timestamped format that dismantles the sense of privacy in the name of recovery. The blog is not the public face of private personal experience, but expressive of the life encompassed by that illness, and encompassing its author’s ongoing personal transformation. The blogs discussed here are not alone in demonstrating these practices. The blog format itself may soon evolve or disappear. Nonetheless, the massification enabled by Internet technologies and applications will continue to transform the ways in which personal experience may be considered private. ReferencesBruns, Axel. Gatewatching: Collaborative Online News Production. New York: Peter Lang, 2005.Bury, Michael. “Chronic Illness as Biographical Disruption.” Sociology of Health and Illness, 4.2 (1982): 167-182.Foucault, Michel. Birth of the Clinic: An Archaeology of Medical Perception. Trans. A.M. Sheridan. London: Tavistock, 1973.———. “Technologies of the Self” Technologies of the Self: A Seminar with Michel Foucault. Ed. Luther H. Martin, Huck Gutman, Patrick M. Hutton, 1988: 16-49. Hardey, Michael. “‘The Story of My Illness’: Personal Accounts of Illness on the Internet.” Health 6.1 (2002): 31-46Kleinman, Arthur, Veena Das, and Margaret Lock, eds. Social Suffering. Berkeley: University of California Press, 1997. Lenhart, Amanda, and Susannah Fox. Bloggers: A Portrait of the Internet’s New Storytellers. Washington: PEW Internet and American Life Project, 2006. Lorde, Audre. The Cancer Journals. San Francisco: Spinsters Ink, 1980.Lovink, Geert. Zero Comments: Blogging and Critical Internet Culture. London: Routledge, 2008. McCullagh, Karen. “Blogging: Self Presentation and Privacy.” Information and Communications Technology Law 17.1 (2008): 3-23. McQuire, Scott. “From Glass Architecture to Big Brother: Scenes from a Cultural History of Transparency.” Cultural Studies Review 9.1 (2003): 103-123.Orgad, Shani. Storytelling Online: Talking Breast Cancer on the Internet. New York: Peter Lang, 2005. Pitts, Victoria. “Illness and Internet Empowerment: Writing and Reading Breast Cancer in Cyberspace.” Health 8.1 (2004): 33-59.Rothenberg, Matthew. “Weblogs, Metadata, and the Semantic Web”, paper presented at the Association of Internet Researchers conference, Toronto, 16 Oct. 2003. ‹http://aoir.org/members/papers42/rothenberg_aoir.pdf›.Singer, Jessica, and George H.S. Singer. “Writing as Physical and Emotional Healing: Findings from Clinical Research.” Handbook of Research on Writing: History, Society, School, Individual, Text. Ed. Charles Bazerman. New York: Lawrence Erlbaum Associates, 2008: 485-498. Sontag, Susan. Illness as Metaphor; And, AIDS and Its Metaphors. London: Penguin, 1991. Trigg, Stephanie. “Life Lessons.” Sunday Age, 10 June 2007. Turkle, Sherry. Life on the Screen: Identity in the Age of the Internet. New York: Simon and Schuster, 1995. Wenger, Etienne. Communities of Practice: Learning, Meaning and Identity. Cambridge: Cambridge University Press, 1998. Wuthnow, Robert. Communities of Discourse: Ideology and Social Structure in the Reformation, the Enlightenment, and European Socialism. Cambridge, MA: Harvard University Press, 1989.BlogsBrainhell. ‹http://brainhell.blogspot.com/›. rdavisjr. Prostate Cancer Journal. ‹http://pcjournal-rrd.blogspot.com/›. Sievers, Leroy. My Cancer. ‹http://www.npr.org/blogs/mycancer/›. Tom’s Road to Recovery. ‹http://tomsrecovery.blog.com/›. Trigg, Stephanie. Humanities Researcher. ‹http://stephanietrigg.blogspot.com/›.

In the last months of his life, 86-year-old Albert Facey became a best-selling author and revered cultural figure following the publication of his autobiography, A Fortunate Life. Released on Anzac Day 1981, it was praised for its “plain, unembellished, utterly sincere and un-self-pitying account of the privations of childhood and youth” (Semmler) and “extremely powerful description of Gallipoli” (Dutton 16). Within weeks, critic Nancy Keesing declared it an “Enduring Classic.” Within six months, it was announced as the winner of two prestigious non-fiction awards, with judges acknowledging Facey’s “extraordinary memory” and “ability to describe scenes and characters with great precision” (“NBC” 4). A Fortunate Life also transformed the fortunes of its publisher. Founded in 1976 as an independent, not-for-profit publishing house, Fremantle Arts Centre Press (FACP) might have been expected, given the Australian average, to survive for just a few years. Former managing editor Ray Coffey attributes the Press’s ongoing viability, in no small measure, to Facey’s success (King 29). Along with Wendy Jenkins, Coffey edited Facey’s manuscript through to publication; only five months after its release, with demand outstripping the capabilities, FACP licensed Penguin to take over the book’s production and distribution. Adaptations soon followed. In 1984, Kerry Packer’s PBL launched a prospectus for a mini-series, which raised a record $6.3 million (PBL 7–8). Aired in 1986 with a high-rating documentary called The Facey Phenomenon, the series became the most watched television event of the year (Lucas). Syndication of chapters to national and regional newspapers, stage and radio productions, audio- and e-books, abridged editions for young readers, and inclusion on secondary school curricula extended the range and influence of Facey’s life writing. Recently, an option was taken out for a new television series (Fraser).A hundred reprints and two million readers on from initial publication, A Fortunate Life continues to rate among the most appreciated Australian books of all time. Commenting on a reader survey in 2012, writer and critic Marieke Hardy enthused, “I really loved it [. . .] I felt like I was seeing a part of my country and my country’s history through a very human voice . . .” (First Tuesday Book Club). Registering a transformed reading, Hardy’s reference to Australian “history” is unproblematically juxtaposed with amused delight in an autobiography that invents and embellishes: not believing “half” of what Facey wrote, she insists he was foremost a yarn spinner. While the work’s status as a witness account has become less authoritative over time, it seems appreciation of the author’s imagination and literary skill has increased (Williamson). A Fortunate Life has been read more commonly as an uncomplicated, first-hand account, such that editor Wendy Jenkins felt it necessary to refute as an “utter mirage” that memoir is “transferred to the page by an act of perfect dictation.” Sidonie Smith and Julia Watson argue of life narratives that some “autobiographical claims [. . .] can be verified or discounted by recourse to documentation outside the text. But autobiographical truth is a different matter” (16). With increased access to archives, especially digitised personnel records, historians have asserted that key elements of Facey’s autobiography are incorrect or “fabricated” (Roberts), including his enlistment in 1914 and participation in the Gallipoli Landing on 25 April 1915. We have researched various sources relevant to Facey’s early years and war service, including hard-copy medical and repatriation records released in 2012, and find A Fortunate Life in a range of ways deviates from “documentation outside of the text,” revealing intriguing, layered storytelling. We agree with Smith and Watson that “autobiographical acts” are “anything but simple or transparent” (63). As “symbolic interactions in the world,” they are “culturally and historically specific” and “engaged in an argument about identity” (63). Inevitably, they are also “fractured by the play of meaning” (63). Our approach, therefore, includes textual analysis of Facey’s drafts alongside the published narrative and his medical records. We do not privilege institutional records as impartial but rather interpret them in terms of their hierarchies and organisation of knowledge. This leads us to speculate on alternative readings of A Fortunate Life as an illness narrative that variously resists and subscribes to dominant cultural plots, tropes, and attitudes. Facey set about writing in earnest in the 1970s and generated (at least) three handwritten drafts, along with a typescript based on the third draft. FACP produced its own working copy from the typescript. Our comparison of the drafts offers insights into the production of Facey’s final text and the otherwise “hidden” roles of editors as transformers and enablers (Munro 1). The notion that a working man with basic literacy could produce a highly readable book in part explains Facey’s enduring appeal. His grandson and literary executor, John Rose, observed in early interviews that Facey was a “natural storyteller” who had related details of his life at every opportunity over a period of more than six decades (McLeod). Jenkins points out that Facey belonged to a vivid oral culture within which he “told and retold stories to himself and others,” so that they eventually “rubbed down into the lines and shapes that would so memorably underpin the extended memoir that became A Fortunate Life.” A mystique was thereby established that “time” was Albert Facey’s “first editor” (Jenkins). The publisher expressly aimed to retain Facey’s voice, content, and meaning, though editing included much correcting of grammar and punctuation, eradication of internal inconsistencies and anomalies, and structural reorganisation into six sections and 68 chapters. We find across Facey’s drafts a broadly similar chronology detailing childhood abandonment, life-threatening incidents, youthful resourcefulness, physical prowess, and participation in the Gallipoli Landing. However, there are also shifts and changed details, including varying descriptions of childhood abuse at a place called Cave Rock; the introduction of (incompatible accounts of) interstate boxing tours in drafts two and three which replace shearing activities in Draft One; divergent tales of Facey as a world-standard athlete, league footballer, expert marksman, and powerful swimmer; and changing stories of enlistment and war service (see Murphy and Nile, “Wounded”; “Naked”).Jenkins edited those sections concerned with childhood and youth, while Coffey attended to Facey’s war and post-war life. Drawing on C.E.W. Bean’s official war history, Coffey introduced specificity to the draft’s otherwise vague descriptions of battle and amended errors, such as Facey’s claim to have witnessed Lord Kitchener on the beach at Gallipoli. Importantly, Coffey suggested the now famous title, “A Fortunate Life,” and encouraged the author to alter the ending. When asked to suggest a title, Facey offered “Cave Rock” (Interview)—the site of his violent abuse and humiliation as a boy. Draft One concluded with Facey’s repatriation from the war and marriage in 1916 (106); Draft Two with a brief account of continuing post-war illness and ultimate defeat: “My war injuries caught up with me again” (107). The submitted typescript concludes: “I have often thought that going to War has caused my life to be wasted” (Typescript 206). This ending differs dramatically from the redemptive vision of the published narrative: “I have lived a very good life, it has been very rich and full. I have been very fortunate and I am thrilled by it when I look back” (412).In The Wounded Storyteller, Arthur Frank argues that literary markets exist for stories of “narrative wreckage” (196) that are redeemed by reconciliation, resistance, recovery, or rehabilitation, which is precisely the shape of Facey’s published life story and a source of its popularity. Musing on his post-war experiences in A Fortunate Life, Facey focuses on his ability to transform the material world around him: “I liked the challenge of building up a place from nothing and making a success where another fellow had failed” (409). If Facey’s challenge was building up something from nothing, something he could set to work on and improve, his life-writing might reasonably be regarded as a part of this broader project and desire for transformation, so that editorial interventions helped him realise this purpose. Facey’s narrative was produced within a specific zeitgeist, which historian Joy Damousi notes was signalled by publication in 1974 of Bill Gammage’s influential, multiply-reprinted study of front-line soldiers, The Broken Years, which drew on the letters and diaries of a thousand Great War veterans, and also the release in 1981 of Peter Weir’s film Gallipoli, for which Gammage was the historical advisor. The story of Australia’s war now conceptualised fallen soldiers as “innocent victims” (Damousi 101), while survivors were left to “compose” memories consistent with their sacrifice (Thomson 237–54). Viewing Facey’s drafts reminds us that life narratives are works of imagination, that the past is not fixed and memory is created in the present. Facey’s autobiographical efforts and those of his publisher to improve the work’s intelligibility and relevance together constitute an attempt to “objectify the self—to present it as a knowable object—through a narrative that re-structures [. . .] the self as history and conclusions” (Foster 10). Yet, such histories almost invariably leave “a crucial gap” or “censored chapter.” Dennis Foster argues that conceiving of narration as confession, rather than expression, “allows us to see the pathos of the simultaneous pursuit and evasion of meaning” (10); we believe a significant lacuna in Facey’s life writing is intimated by its various transformations.In a defining episode, A Fortunate Life proposes that Facey was taken from Gallipoli on 19 August 1915 due to wounding that day from a shell blast that caused sandbags to fall on him, crush his leg, and hurt him “badly inside,” and a bullet to the shoulder (348). The typescript, however, includes an additional but narratively irreconcilable date of 28 June for the same wounding. The later date, 19 August, was settled on for publication despite the author’s compelling claim for the earlier one: “I had been blown up by a shell and some 7 or 8 sandbags had fallen on top of me, the day was the 28th of June 1915, how I remembered this date, it was the day my brother Roy had been killed by a shell burst.” He adds: “I was very ill for about six weeks after the incident but never reported it to our Battalion doctor because I was afraid he would send me away” (Typescript 205). This account accords with Facey’s first draft and his medical records but is inconsistent with other parts of the typescript that depict an uninjured Facey taking a leading role in fierce fighting throughout July and August. It appears, furthermore, that Facey was not badly wounded at any time. His war service record indicates that he was removed from Gallipoli due to “heart troubles” (Repatriation), which he also claims in his first draft. Facey’s editors did not have ready access to military files in Canberra, while medical files were not released until 2012. There existed, therefore, virtually no opportunity to corroborate the author’s version of events, while the official war history and the records of the State Library of Western Australia, which were consulted, contain no reference to Facey or his war service (Interview). As a consequence, the editors were almost entirely dependent on narrative logic and clarifications by an author whose eyesight and memory had deteriorated to such an extent he was unable to read his amended text. A Fortunate Life depicts men with “nerve sickness” who were not permitted to “stay at the Front because they would be upsetting to the others, especially those who were inclined that way themselves” (350). By cross referencing the draft manuscripts against medical records, we can now perceive that Facey was regarded as one of those nerve cases. According to Facey’s published account, his wounds “baffled” doctors in Egypt and Fremantle (353). His medical records reveal that in September 1915, while hospitalised in Egypt, his “palpitations” were diagnosed as “Tachycardia” triggered by war-induced neuroses that began on 28 June. This suggests that Facey endured seven weeks in the field in this condition, with the implication being that his debility worsened, resulting in his hospitalisation. A diagnosis of “debility,” “nerves,” and “strain” placed Facey in a medical category of “Special Invalids” (Butler 541). Major A.W. Campbell noted in the Medical Journal of Australia in 1916 that the war was creating “many cases of little understood nervous and mental affections, not only where a definite wound has been received, but in many cases where nothing of the sort appears” (323). Enlisted doctors were either physicians or surgeons and sometimes both. None had any experience of trauma on the scale of the First World War. In 1915, Campbell was one of only two Australian doctors with any pre-war experience of “mental diseases” (Lindstrom 30). On staff at the Australian Base Hospital at Heliopolis throughout the Gallipoli campaign, he claimed that at times nerve cases “almost monopolised” the wards under his charge (319). Bearing out Facey’s description, Campbell also reported that affected men “received no sympathy” and, as “carriers of psychic contagion,” were treated as a “source of danger” to themselves and others (323). Credentialed by royal colleges in London and coming under British command, Australian medical teams followed the practice of classifying men presenting “nervous or mental symptoms” as “battle casualties” only if they had also been wounded by “enemy action” (Loughran 106). By contrast, functional disability, with no accompanying physical wounds, was treated as unmanly and a “hysterical” reaction to the pressures of war. Mental debility was something to be feared in the trenches and diagnosis almost invariably invoked charges of predisposition or malingering (Tyquin 148–49). This shifted responsibility (and blame) from the war to the individual. Even as late as the 1950s, medical notes referred to Facey’s condition as being “constitutional” (Repatriation).Facey’s narrative demonstrates awareness of how harshly sufferers were treated. We believe that he defended himself against this with stories of physical injury that his doctors never fully accepted and that he may have experienced conversion disorder, where irreconcilable experience finds somatic expression. His medical diagnosis in 1915 and later life writing establish a causal link with the explosion and his partial burial on 28 June, consistent with opinion at the time that linked concussive blasts with destabilisation of the nervous system (Eager 422). Facey was also badly shaken by exposure to the violence and abjection of war, including hand-to-hand combat and retrieving for burial shattered and often decomposed bodies, and, in particular, by the death of his brother Roy, whose body was blown to pieces on 28 June. (A second brother, Joseph, was killed by multiple bayonet wounds while Facey was convalescing in Egypt.) Such experiences cast a different light on Facey’s observation of men suffering nerves on board the hospital ship: “I have seen men doze off into a light sleep and suddenly jump up shouting, ‘Here they come! Quick! Thousands of them. We’re doomed!’” (350). Facey had escaped the danger of death by explosion or bayonet but at a cost, and the war haunted him for the rest of his days. On disembarkation at Fremantle on 20 November 1915, he was admitted to hospital where he remained on and off for several months. Forty-one other sick and wounded disembarked with him (HMAT). Around one third, experiencing nerve-related illness, had been sent home for rest; while none returned to the war, some of the physically wounded did (War Service Records). During this time, Facey continued to present with “frequent attacks of palpitation and giddiness,” was often “short winded,” and had “heart trouble” (Repatriation). He was discharged from the army in June 1916 but, his drafts suggest, his war never really ended. He began a new life as a wounded Anzac. His dependent and often fractious relationship with the Repatriation Department ended only with his death 66 years later. Historian Marina Larsson persuasively argues that repatriated sick and wounded servicemen from the First World War represented a displaced presence at home. Many led liminal lives of “disenfranchised grief” (80). Stephen Garton observes a distinctive Australian use of repatriation to describe “all policies involved in returning, discharging, pensioning, assisting and training returned men and women, and continuing to assist them throughout their lives” (74). Its primary definition invokes coming home but to repatriate also implies banishment from a place that is not home, so that Facey was in this sense expelled from Gallipoli and, by extension, excluded from the myth of Anzac. Unlike his two brothers, he would not join history as one of the glorious dead; his name would appear on no roll of honour. Return home is not equivalent to restoration of his prior state and identity, for baggage from the other place perpetually weighs. Furthermore, failure to regain health and independence strains hospitality and gratitude for the soldier’s service to King and country. This might be exacerbated where there is no evident or visible injury, creating suspicion of resistance, cowardice, or malingering. Over 26 assessments between 1916 and 1958, when Facey was granted a full war pension, the Repatriation Department observed him as a “neuropathic personality” exhibiting “paroxysmal tachycardia” and “neurocirculatory asthenia.” In 1954, doctors wrote, “We consider the condition is a real handicap and hindrance to his getting employment.” They noted that after “attacks,” Facey had a “busted depressed feeling,” but continued to find “no underlying myocardial disease” (Repatriation) and no validity in Facey’s claims that he had been seriously physically wounded in the war (though A Fortunate Life suggests a happier outcome, where an independent medical panel finally locates the cause of his ongoing illness—rupture of his spleen in the war—which results in an increased war pension). Facey’s condition was, at times, a source of frustration for the doctors and, we suspect, disappointment and shame to him, though this appeared to reduce on both sides when the Repatriation Department began easing proof of disability from the 1950s (Thomson 287), and the Department of Veteran’s Affairs was created in 1976. This had the effect of shifting public and media scrutiny back onto a system that had until then deprived some “innocent victims of the compensation that was their due” (Garton 249). Such changes anticipated the introduction of Post-Traumatic Shock Disorder (PTSD) to the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980. Revisions to the DSM established a “genealogy of trauma” and “panic disorders” (100, 33), so that diagnoses such as “neuropathic personality” (Echterling, Field, and Stewart 192) and “soldier’s heart,” that is, disorders considered “neurotic,” were “retrospectively reinterpreted” as a form of PTSD. However, Alberti points out that, despite such developments, war-related trauma continues to be contested (80). We propose that Albert Facey spent his adult life troubled by a sense of regret and failure because of his removal from Gallipoli and that he attempted to compensate through storytelling, which included his being an original Anzac and seriously wounded in action. By writing, Facey could shore up his rectitude, work ethic, and sense of loyalty to other servicemen, which became necessary, we believe, because repatriation doctors (and probably others) had doubted him. In 1927 and again in 1933, an examining doctor concluded: “The existence of a disability depends entirely on his own unsupported statements” (Repatriation). We argue that Facey’s Gallipoli experiences transformed his life. By his own account, he enlisted for war as a physically robust and supremely athletic young man and returned nine months later to life-long anxiety and ill-health. Publication transformed him into a national sage, earning him, in his final months, the credibility, empathy, and affirmation he had long sought. Exploring different accounts of Facey, in the shape of his drafts and institutional records, gives rise to new interpretations. In this context, we believe it is time for a new edition of A Fortunate Life that recognises it as a complex testimonial narrative and theorises Facey’s deployment of national legends and motifs in relation to his “wounded storytelling” as well as to shifting cultural and medical conceptualisations and treatments of shame and trauma. ReferencesAlberti, Fay Bound. Matters of the Heart: History, Medicine, and Emotions. Oxford: Oxford UP, 2010. Butler, A.G. Official History of the Australian Medical Services 1814-1918: Vol I Gallipoli, Palestine and New Guinea. Canberra: Australian War Memorial, 1930.Campbell, A.W. “Remarks on Some Neuroses and Psychoses in War.” Medical Journal of Australia 15 April (1916): 319–23.Damousi, Joy. “Why Do We Get So Emotional about Anzac.” What’s Wrong with Anzac. Ed. Marilyn Lake and Henry Reynolds. Sydney: UNSWP, 2015. 94–109.Dutton, Geoffrey. “Fremantle Arts Centre Press Publicity.” Australian Book Review May (1981): 16.Eager, R. “War Neuroses Occurring in Cases with a Definitive History of Shell Shock.” British Medical Journal 13 Apr. 1918): 422–25.Echterling, L.G., Thomas A. Field, and Anne L. Stewart. “Evolution of PTSD in the DSM.” Future Directions in Post-Traumatic Stress Disorder: Prevention, Diagnosis, and Treatment. Ed. Marilyn P. Safir and Helene S. Wallach. New York: Springer, 2015. 189–212.Facey, A.B. A Fortunate Life. 1981. Ringwood: Penguin, 2005.———. Drafts 1–3. University of Western Australia, Special Collections.———. Transcript. University of Western Australia, Special Collections.First Tuesday Book Club. ABC Splash. 4 Dec. 2012. <http://splash.abc.net.au/home#!/media/1454096/http&>.Foster, Dennis. Confession and Complicity in Narrative. Cambridge: Cambridge UP, 1987.Frank, Arthur. The Wounded Storyteller. London: U of Chicago P, 1995.Fraser, Jane. “CEO Says.” Fremantle Press. 7 July 2015. <https://www.fremantlepress.com.au/c/news/3747-ceo-says-9>.Garton, Stephen. The Cost of War: Australians Return. Melbourne: Oxford UP, 1994.HMAT Aeneas. “Report of Passengers for the Port of Fremantle from Ports Beyond the Commonwealth.” 20 Nov. 1915. <http://recordsearch.naa.gov.au/SearchNRetrieve/Interface/ViewImage.aspx?B=9870708&S=1>.“Interview with Ray Coffey.” Personal interview. 6 May 2016. Follow-up correspondence. 12 May 2016.Jenkins, Wendy. “Tales from the Backlist: A Fortunate Life Turns 30.” Fremantle Press, 14 April 2011. <https://www.fremantlepress.com.au/c/bookclubs/574-tales-from-the-backlist-a-fortunate-life-turns-30>.Keesing, Nancy. ‘An Enduring Classic.’ Australian Book Review (May 1981). FACP Press Clippings. Fremantle. n. pag.King, Noel. “‘I Can’t Go On … I’ll Go On’: Interview with Ray Coffey, Fremantle Arts Centre Press, 22 Dec. 2004; 24 May 2006.” Westerly 51 (2006): 31–54.Larsson, Marina. “A Disenfranchised Grief: Post War Death and Memorialisation in Australia after the First World War.” Australian Historical Studies 40.1 (2009): 79–95.Lindstrom, Richard. “The Australian Experience of Psychological Casualties in War: 1915-1939.” PhD dissertation. Victoria University, Feb. 1997.Loughran, Tracey. “Shell Shock, Trauma, and the First World War: The Making of a Diagnosis and its Histories.” Journal of the History of Medical and Allied Sciences 67.1 (2012): 99–119.Lucas, Anne. “Curator’s Notes.” A Fortunate Life. Australian Screen. <http://aso.gov.au/titles/tv/a-fortunate-life/notes/>.McLeod, Steve. “My Fortunate Life with Grandad.” Western Magazine Dec. (1983): 8.Munro, Craig. Under Cover: Adventures in the Art of Editing. Brunswick: Scribe, 2015.Murphy, Ffion, and Richard Nile. “The Naked Anzac: Exposure and Concealment in A.B. Facey’s A Fortunate Life.” Southerly 75.3 (2015): 219–37.———. “Wounded Storyteller: Revisiting Albert Facey’s Fortunate Life.” Westerly 60.2 (2015): 87–100.“NBC Book Awards.” Australian Book Review Oct. (1981): 1–4.PBL. Prospectus: A Fortunate Life, the Extraordinary Life of an Ordinary Bloke. 1–8.Repatriation Records. Albert Facey. National Archives of Australia.Roberts, Chris. “Turkish Machine Guns at the Landing.” Wartime: Official Magazine of the Australian War Memorial 50 (2010). <https://www.awm.gov.au/wartime/50/roberts_machinegun/>.Semmler, Clement. “The Way We Were before the Good Life.” Courier Mail 10 Oct. 1981. FACP Press Clippings. Fremantle. n. pag.Smith, Sidonie, and Julia Watson. Reading Autobiography: A Guide for Interpreting Life Narratives. 2001. 2nd ed. U of Minnesota P, 2010.Thomson, Alistair. Anzac Memories: Living with the Legend. 1994. 2nd ed. Melbourne: Monash UP, 2013. Tyquin, Michael. Gallipoli, the Medical War: The Australian Army Services in the Dardanelles Campaign of 1915. Kensington: UNSWP, 1993.War Service Records. National Archives of Australia. <http://recordsearch.naa.gov.au/NameSearch/Interface/NameSearchForm.aspx>.Williamson, Geordie. “A Fortunate Life.” Copyright Agency. <http://readingaustralia.com.au/essays/a-fortunate-life/>.

Introduction The highly contagious COVID-19 virus has presented particularly difficult public policy challenges. The relatively late emergence of an effective treatments and vaccines, the structural stresses on health care systems, the lockdowns and the economic dislocations, the evident structural inequalities in effected societies, as well as the difficulty of prevention have tested social and political cohesion. Moreover, the intrusive nature of many prophylactic measures have led to individual liberty and human rights concerns. As noted by the Victorian (Australia) Ombudsman Report on the COVID-19 lockdown in Melbourne, we may be tempted, during a crisis, to view human rights as expendable in the pursuit of saving human lives. This thinking can lead to dangerous territory. It is not unlawful to curtail fundamental rights and freedoms when there are compelling reasons for doing so; human rights are inherently and inseparably a consideration of human lives. (5) These difficulties have raised issues about the importance of social or community capital in fighting the pandemic. This article discusses the impacts of social and community capital and other factors on the governmental efforts to combat the spread of infectious disease through the maintenance of social distancing and household ‘bubbles’. It argues that the beneficial effects of social and community capital towards fighting the pandemic, such as mutual respect and empathy, which underpins such public health measures as social distancing, the use of personal protective equipment, and lockdowns in the USA, have been undermined as preventive measures because they have been transmogrified to become a salient aspect of the “culture wars” (Peters). In contrast, states that have relatively lower social capital such a China have been able to more effectively arrest transmission of the disease because the government was been able to generate and personify a nationalist response to the virus and thus generate a more robust social consensus regarding the efforts to combat the disease. Social Capital and Culture Wars The response to COVID-19 required individuals, families, communities, and other types of groups to refrain from extensive interaction – to stay in their bubble. In these situations, especially given the asymptomatic nature of many COVID-19 infections and the serious imposition lockdowns and social distancing and isolation, the temptation for individuals to breach public health rules in high. From the perspective of policymakers, the response to fighting COVID-19 is a collective action problem. In studying collective action problems, scholars have paid much attention on the role of social and community capital (Ostrom and Ahn 17-35). Ostrom and Ahn comment that social capital “provides a synthesizing approach to how cultural, social, and institutional aspects of communities of various sizes jointly affect their capacity of dealing with collective-action problems” (24). Social capital is regarded as an evolving social type of cultural trait (Fukuyama; Guiso et al.). Adger argues that social capital “captures the nature of social relations” and “provides an explanation for how individuals use their relationships to other actors in societies for their own and for the collective good” (387). The most frequently used definition of social capital is the one proffered by Putnam who regards it as “features of social organization, such as networks, norms and social trust that facilitate coordination and cooperation for mutual benefit” (Putnam, “Bowling Alone” 65). All these studies suggest that social and community capital has at least two elements: “objective associations” and subjective ties among individuals. Objective associations, or social networks, refer to both formal and informal associations that are formed and engaged in on a voluntary basis by individuals and social groups. Subjective ties or norms, on the other hand, primarily stand for trust and reciprocity (Paxton). High levels of social capital have generally been associated with democratic politics and civil societies whose institutional performance benefits from the coordinated actions and civic culture that has been facilitated by high levels of social capital (Putnam, Democracy 167-9). Alternatively, a “good and fair” state and impartial institutions are important factors in generating and preserving high levels of social capital (Offe 42-87). Yet social capital is not limited to democratic civil societies and research is mixed on whether rising social capital manifests itself in a more vigorous civil society that in turn leads to democratising impulses. Castillo argues that various trust levels for institutions that reinforce submission, hierarchy, and cultural conservatism can be high in authoritarian governments, indicating that high levels of social capital do not necessarily lead to democratic civic societies (Castillo et al.). Roßteutscher concludes after a survey of social capita indicators in authoritarian states that social capital has little effect of democratisation and may in fact reinforce authoritarian rule: in nondemocratic contexts, however, it appears to throw a spanner in the works of democratization. Trust increases the stability of nondemocratic leaderships by generating popular support, by suppressing regime threatening forms of protest activity, and by nourishing undemocratic ideals concerning governance (752). In China, there has been ongoing debate concerning the presence of civil society and the level of social capital found across Chinese society. If one defines civil society as an intermediate associational realm between the state and the family, populated by autonomous organisations which are separate from the state that are formed voluntarily by members of society to protect or extend their interests or values, it is arguable that the PRC had a significant civil society or social capital in the first few decades after its establishment (White). However, most scholars agree that nascent civil society as well as a more salient social and community capital has emerged in China’s reform era. This was evident after the 2008 Sichuan earthquake, where the government welcomed community organising and community-driven donation campaigns for a limited period of time, giving the NGO sector and bottom-up social activism a boost, as evidenced in various policy areas such as disaster relief and rural community development (F. Wu 126; Xu 9). Nevertheless, the CCP and the Chinese state have been effective in maintaining significant control over civil society and autonomous groups without attempting to completely eliminate their autonomy or existence. The dramatic economic and social changes that have occurred since the 1978 Opening have unsurprisingly engendered numerous conflicts across the society. In response, the CCP and State have adjusted political economic policies to meet the changing demands of workers, migrants, the unemployed, minorities, farmers, local artisans, entrepreneurs, and the growing middle class. Often the demands arising from these groups have resulted in policy changes, including compensation. In other circumstances, where these groups remain dissatisfied, the government will tolerate them (ignore them but allow them to continue in the advocacy), or, when the need arises, supress the disaffected groups (F. Wu 2). At the same time, social organisations and other groups in civil society have often “refrained from open and broad contestation against the regime”, thereby gaining the space and autonomy to achieve the objectives (F. Wu 2). Studies of Chinese social or community capital suggest that a form of modern social capital has gradually emerged as Chinese society has become increasingly modernised and liberalised (despite being non-democratic), and that this social capital has begun to play an important role in shaping social and economic lives at the local level. However, this more modern form of social capital, arising from developmental and social changes, competes with traditional social values and social capital, which stresses parochial and particularistic feelings among known individuals while modern social capital emphasises general trust and reciprocal feelings among both known and unknown individuals. The objective element of these traditional values are those government-sanctioned, formal mass organisations such as Communist Youth and the All-China Federation of Women's Associations, where members are obliged to obey the organisation leadership. The predominant subjective values are parochial and particularistic feelings among individuals who know one another, such as guanxi and zongzu (Chen and Lu, 426). The concept of social capital emphasises that the underlying cooperative values found in individuals and groups within a culture are an important factor in solving collective problems. In contrast, the notion of “culture war” focusses on those values and differences that divide social and cultural groups. Barry defines culture wars as increases in volatility, expansion of polarisation, and conflict between those who are passionate about religiously motivated politics, traditional morality, and anti-intellectualism, and…those who embrace progressive politics, cultural openness, and scientific and modernist orientations. (90) The contemporary culture wars across the world manifest opposition by various groups in society who hold divergent worldviews and ideological positions. Proponents of culture war understand various issues as part of a broader set of religious, political, and moral/normative positions invoked in opposition to “elite”, “liberal”, or “left” ideologies. Within this Manichean universe opposition to such issues as climate change, Black Lives Matter, same sex rights, prison reform, gun control, and immigration becomes framed in binary terms, and infused with a moral sensibility (Chapman 8-10). In many disputes, the culture war often devolves into an epistemological dispute about the efficacy of scientific knowledge and authority, or a dispute between “practical” and theoretical knowledge. In this environment, even facts can become partisan narratives. For these “cultural” disputes are often how electoral prospects (generally right-wing) are advanced; “not through policies or promises of a better life, but by fostering a sense of threat, a fantasy that something profoundly pure … is constantly at risk of extinction” (Malik). This “zero-sum” social and policy environment that makes it difficult to compromise and has serious consequences for social stability or government policy, especially in a liberal democratic society. Of course, from the perspective of cultural materialism such a reductionist approach to culture and political and social values is not unexpected. “Culture” is one of the many arenas in which dominant social groups seek to express and reproduce their interests and preferences. “Culture” from this sense is “material” and is ultimately connected to the distribution of power, wealth, and resources in society. As such, the various policy areas that are understood as part of the “culture wars” are another domain where various dominant and subordinate groups and interests engaged in conflict express their values and goals. Yet it is unexpected that despite the pervasiveness of information available to individuals the pool of information consumed by individuals who view the “culture wars” as a touchstone for political behaviour and a narrative to categorise events and facts is relatively closed. This lack of balance has been magnified by social media algorithms, conspiracy-laced talk radio, and a media ecosystem that frames and discusses issues in a manner that elides into an easily understood “culture war” narrative. From this perspective, the groups (generally right-wing or traditionalist) exist within an information bubble that reinforces political, social, and cultural predilections. American and Chinese Reponses to COVID-19 The COVID-19 pandemic first broke out in Wuhan in December 2019. Initially unprepared and unwilling to accept the seriousness of the infection, the Chinese government regrouped from early mistakes and essentially controlled transmission in about three months. This positive outcome has been messaged as an exposition of the superiority of the Chinese governmental system and society both domestically and internationally; a positive, even heroic performance that evidences the populist credentials of the Chinese political leadership and demonstrates national excellence. The recently published White Paper entitled “Fighting COVID-19: China in Action” also summarises China’s “strategic achievement” in the simple language of numbers: in a month, the rising spread was contained; in two months, the daily case increase fell to single digits; and in three months, a “decisive victory” was secured in Wuhan City and Hubei Province (Xinhua). This clear articulation of the positive results has rallied political support. Indeed, a recent survey shows that 89 percent of citizens are satisfied with the government’s information dissemination during the pandemic (C Wu). As part of the effort, the government extensively promoted the provision of “political goods”, such as law and order, national unity and pride, and shared values. For example, severe publishments were introduced for violence against medical professionals and police, producing and selling counterfeit medications, raising commodity prices, spreading ‘rumours’, and being uncooperative with quarantine measures (Xu). Additionally, as an extension the popular anti-corruption campaign, many local political leaders were disciplined or received criminal charges for inappropriate behaviour, abuse of power, and corruption during the pandemic (People.cn, 2 Feb. 2020). Chinese state media also described fighting the virus as a global “competition”. In this competition a nation’s “material power” as well as “mental strength”, that calls for the highest level of nation unity and patriotism, is put to the test. This discourse recalled the global competition in light of the national mythology related to the formation of Chinese nation, the historical “hardship”, and the “heroic Chinese people” (People.cn, 7 Apr. 2020). Moreover, as the threat of infection receded, it was emphasised that China “won this competition” and the Chinese people have demonstrated the “great spirit of China” to the world: a result built upon the “heroism of the whole Party, Army, and Chinese people from all ethnic groups” (People.cn, 7 Apr. 2020). In contrast to the Chinese approach of emphasising national public goods as a justification for fighting the virus, the U.S. Trump Administration used nationalism, deflection, and “culture war” discourse to undermine health responses — an unprecedented response in American public health policy. The seriousness of the disease as well as the statistical evidence of its course through the American population was disputed. The President and various supporters raged against the COVID-19 “hoax”, social distancing, and lockdowns, disparaged public health institutions and advice, and encouraged protesters to “liberate” locked-down states (Russonello). “Our federal overlords say ‘no singing’ and ‘no shouting’ on Thanksgiving”, Representative Paul Gosar, a Republican of Arizona, wrote as he retweeted a Centers for Disease Control list of Thanksgiving safety tips (Weiner). People were encouraged, by way of the White House and Republican leadership, to ignore health regulations and not to comply with social distancing measures and the wearing of masks (Tracy). This encouragement led to threats against proponents of face masks such as Dr Anthony Fauci, one of the nation’s foremost experts on infectious diseases, who required bodyguards because of the many threats on his life. Fauci’s critics — including President Trump — countered Fauci’s promotion of mask wearing by stating accusingly that he once said mask-wearing was not necessary for ordinary people (Kelly). Conspiracy theories as to the safety of vaccinations also grew across the course of the year. As the 2020 election approached, the Administration ramped up efforts to downplay the serious of the virus by identifying it with “the media” and illegitimate “partisan” efforts to undermine the Trump presidency. It also ramped up its criticism of China as the source of the infection. This political self-centeredness undermined state and federal efforts to slow transmission (Shear et al.). At the same time, Trump chided health officials for moving too slowly on vaccine approvals, repeated charges that high infection rates were due to increased testing, and argued that COVID-19 deaths were exaggerated by medical providers for political and financial reasons. These claims were amplified by various conservative media personalities such as Rush Limbaugh, and Sean Hannity and Laura Ingraham of Fox News. The result of this “COVID-19 Denialism” and the alternative narrative of COVID-19 policy told through the lens of culture war has resulted in the United States having the highest number of COVID-19 cases, and the highest number of COVID-19 deaths. At the same time, the underlying social consensus and social capital that have historically assisted in generating positive public health outcomes has been significantly eroded. According to the Pew Research Center, the share of U.S. adults who say public health officials such as those at the Centers for Disease Control and Prevention are doing an excellent or good job responding to the outbreak decreased from 79% in March to 63% in August, with an especially sharp decrease among Republicans (Pew Research Center 2020). Social Capital and COVID-19 From the perspective of social or community capital, it could be expected that the American response to the Pandemic would be more effective than the Chinese response. Historically, the United States has had high levels of social capital, a highly developed public health system, and strong governmental capacity. In contrast, China has a relatively high level of governmental and public health capacity, but the level of social capital has been lower and there is a significant presence of traditional values which emphasise parochial and particularistic values. Moreover, the antecedent institutions of social capital, such as weak and inefficient formal institutions (Batjargal et al.), environmental turbulence and resource scarcity along with the transactional nature of guanxi (gift-giving and information exchange and relationship dependence) militate against finding a more effective social and community response to the public health emergency. Yet China’s response has been significantly more successful than the Unites States’. Paradoxically, the American response under the Trump Administration and the Chinese response both relied on an externalisation of the both the threat and the justifications for their particular response. In the American case, President Trump, while downplaying the seriousness of the virus, consistently called it the “China virus” in an effort to deflect responsibly as well as a means to avert attention away from the public health impacts. As recently as 3 January 2021, Trump tweeted that the number of “China Virus” cases and deaths in the U.S. were “far exaggerated”, while critically citing the Centers for Disease Control and Prevention's methodology: “When in doubt, call it COVID-19. Fake News!” (Bacon). The Chinese Government, meanwhile, has pursued a more aggressive foreign policy across the South China Sea, on the frontier in the Indian sub-continent, and against states such as Australia who have criticised the initial Chinese response to COVID-19. To this international criticism, the government reiterated its sovereign rights and emphasised its “victimhood” in the face of “anti-China” foreign forces. Chinese state media also highlighted China as “victim” of the coronavirus, but also as a target of Western “political manoeuvres” when investigating the beginning stages of the pandemic. The major difference, however, is that public health policy in the United States was superimposed on other more fundamental political and cultural cleavages, and part of this externalisation process included the assignation of “otherness” and demonisation of internal political opponents or characterising political opponents as bent on destroying the United States. This assignation of “otherness” to various internal groups is a crucial element in the culture wars. While this may have been inevitable given the increasingly frayed nature of American society post-2008, such a characterisation has been activity pushed by local, state, and national leadership in the Republican Party and the Trump Administration (Vogel et al.). In such circumstances, minimising health risks and highlighting civil rights concerns due to public health measures, along with assigning blame to the democratic opposition and foreign states such as China, can have a major impact of public health responses. The result has been that social trust beyond the bubble of one’s immediate circle or those who share similar beliefs is seriously compromised — and the collective action problem presented by COVID-19 remains unsolved. Daniel Aldrich’s study of disasters in Japan, India, and US demonstrates that pre-existing high levels of social capital would lead to stronger resilience and better recovery (Aldrich). Social capital helps coordinate resources and facilitate the reconstruction collectively and therefore would lead to better recovery (Alesch et al.). Yet there has not been much research on how the pool of social capital first came about and how a disaster may affect the creation and store of social capital. Rebecca Solnit has examined five major disasters and describes that after these events, survivors would reach out and work together to confront the challenges they face, therefore increasing the social capital in the community (Solnit). However, there are studies that have concluded that major disasters can damage the social fabric in local communities (Peacock et al.). The COVID-19 epidemic does not have the intensity and suddenness of other disasters but has had significant knock-on effects in increasing or decreasing social capital, depending on the institutional and social responses to the pandemic. In China, it appears that the positive social capital effects have been partially subsumed into a more generalised patriotic or nationalist affirmation of the government’s policy response. Unlike civil society responses to earlier crises, such as the 2008 Sichuan earthquake, there is less evidence of widespread community organisation and response to combat the epidemic at its initial stages. This suggests better institutional responses to the crisis by the government, but also a high degree of porosity between civil society and a national “imagined community” represented by the national state. The result has been an increased legitimacy for the Chinese government. Alternatively, in the United States the transformation of COVID-19 public health policy into a culture war issue has seriously impeded efforts to combat the epidemic in the short term by undermining the social consensus and social capital necessary to fight such a pandemic. Trust in American institutions is historically low, and President Trump’s untrue contention that President Biden’s election was due to “fraud” has further undermined the legitimacy of the American government, as evidenced by the attacks directed at Congress in the U.S. capital on 6 January 2021. As such, the lingering effects the pandemic will have on social, economic, and political institutions will likely reinforce the deep cultural and political cleavages and weaken interpersonal networks in American society. Conclusion The COVID-19 pandemic has devastated global public health and impacted deeply on the world economy. Unsurprisingly, given the serious economic, social, and political consequences, different government responses have been highly politicised. Various quarantine and infection case tracking methods have caused concern over state power intruding into private spheres. The usage of face masks, social distancing rules, and intra-state travel restrictions have aroused passionate debate over public health restrictions, individual liberty, and human rights. Yet underlying public health responses grounded in higher levels of social capital enhance the effectiveness of public health measures. In China, a country that has generally been associated with lower social capital, it is likely that the relatively strong policy response to COVID-19 will both enhance feelings of nationalism and Chinese exceptionalism and help create and increase the store of social capital. 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The debate on the social role of museums trundles along in an age where complex associations between community, collections, and cultural norms are highly contested (Silverman 3–4; Sandell, Inequality 3–23). This article questions whether, in the case of community groups whose aspirations often go unrecognised (in this case people with either blindness or low vision), there is a need to discuss and debate institutionalised approaches that often reinforce social exclusion and impede cultural access. If “access is [indeed] an entry point to experience” (Papalia), then the privileging of visual encounters in museums is clearly a barrier for people who experience sight loss or low vision (Levent and Pursley). In contrast, a multisensory aesthetic to exhibition display respects the gamut of human sensory experience (Dudley 161–63; Drobnick 268–69; Feld 184; James 136; McGlone 41–60) as do discursive gateways including “lectures, symposia, workshops, educational programs, audio guides, and websites” (Cachia). Independent access to information extends beyond Braille on toilet doors.Underpinning this article is an ongoing qualitative case study undertaken by the author involving participant observation, workshops, and interviews with eight adults who experience vision impairment. The primary research site has been the National Museum of Australia. Reflecting on the role of curators as storytellers and the historical development of museums and their practitioners as agents for social development, the article explores the opportunities latent in museum collections as they relate to community members with vision impairment. The outcomes of this investigation offer insights into emerging issues as they relate to the International Council of Museums (ICOM) definitions of the museum program. Curators as Storytellers“The ways in which objects are selected, put together, and written or spoken about have political effects” (Eilean Hooper-Greenhill qtd. in Sandell, Inequality 8). Curators can therefore open or close doors to discrete communities of people. The traditional role of curators has been to collect, care for, research, and interpret collections (Desvallées and Mairesse 68): they are characterised as information specialists with a penchant for research (Belcher 78). While commonly possessing an intimate knowledge of their institution’s collection, their mode of knowledge production results from a culturally mediated process which ensures that resulting products, such as cultural significance assessments and provenance determinations (Russell and Winkworth), privilege the knowing systems of dominant social groups (Fleming 213). Such ways of seeing can obstruct the access prospects of underserved audiences.When it comes to exhibition display—arguably the most public of work by museums—curators conventionally collaborate within a constellation of other practitioners (Belcher 78–79). Curators liaise with museum directors, converse with conservators, negotiate with exhibition designers, consult with graphics designers, confer with marketing boffins, seek advice from security, chat with editors, and engage with external contractors. I question the extent that curators engage with community groups who may harbour aspirations to participate in the exhibition experience—a sticking point soon to be addressed. Despite the team based ethos of exhibition design, it is nonetheless the content knowledge of curators on public display. The art of curatorial interpretation sets out not to instruct audiences but, in part, to provoke a response with narratives designed to reveal meanings and relationships (Freeman Tilden qtd. in Alexander and Alexander 258). Recognised within the institution as experts (Sandell, Inclusion 53), curators have agency—they decide upon the stories told. In a recent television campaign by the National Museum of Australia, a voiceover announces: a storyteller holds incredible power to connect and to heal, because stories bring us together (emphasis added). (National Museum of Australia 2015)Storytelling in the space of the museum often shares the histories, perspectives, and experiences of people past as well as living cultures—and these stories are situated in space and time. If that physical space is not fit-for-purpose—that is, it does not accommodate an individual’s physical, intellectual, psychiatric, sensory, or neurological needs (Disability Discrimination Act 1992, Cwlth)—then the story reaches only long-established patrons. The museum’s opportunity to contribute to social development, and thus the curator’s as the primary storyteller, will have been missed. A Latin-American PerspectiveICOM’s commitment to social development could be interpreted merely as a pledge to make use of collections to benefit the public through scholarship, learning, and pleasure (ICOM 15). If this interpretation is accepted, however, then any museum’s contribution to social development is somewhat paltry. To accept such a limited and limiting role for museums is to overlook the historical efforts by advocates to change the very nature of museums. The ascendancy of the social potential of museums first blossomed during the late 1960s at a time where, globally, overlapping social movements espoused civil rights and the recognition of minority groups (Silverman 12; de Varine 3). Simultaneously but independently, neighbourhood museums arose in the United States, ecomuseums in France and Quebec, and the integral museum in Latin America, notably in Mexico (Hauenschild; Silverman 12–13). The Latin-American commitment to the ideals of the integral museum developed out of the 1972 round table of Santiago, Chile, sponsored by the United Nations Educational, Scientific and Cultural Organization (Giménez-Cassina 25–26). The Latin-American signatories urged the local and regional museums of their respective countries to collaborate with their communities to resolve issues of social inequality (Round Table Santiago 13–21). The influence of Brazilian educator Paulo Freire should be acknowledged. In 1970, Freire ushered in the concept of conscientization, defined by Catherine Campbell and Sandra Jovchelovitch as:the process whereby critical thinking develops … [and results in a] … thinker [who] feels empowered to think and to act on the conditions that shape her living. (259–260)This model for empowerment lent inspiration to the ideals of the Santiago signatories in realising their sociopolitical goal of the integral museum (Assunção dos Santos 20). Reframing the museum as an institution in the service of society, the champions of the integral museum sought to redefine the thinking and practices of museums and their practitioners (United Nations Educational, Scientific and Cultural Organization 37–39). The signatories successfully lobbied ICOM to introduce an explicitly social purpose to the work of museums (Assunção dos Santos 6). In 1974, in the wake of the Santiago round table, ICOM modified their definition of a museum to “a permanent non-profit institution, open to the public, in the service of society and its development” (emphasis added) (Hauenschild). Museums had been transformed into “problem solvers” (Judite Primo qtd. in Giménez-Cassina 26). With that spirit in mind, museum practitioners, including curators, can develop opportunities for reciprocity with the many faces of the public (Guarini). Response to Social Development InitiativesStarting in the 1970s, the “second museum revolution” (van Mensch 6–7) saw the transition away from: traditional roles of museums [of] collecting, conservation, curatorship, research and communication … [and toward the] … potential role of museums in society, in education and cultural action. (van Mensch 6–7)Arguably, this potential remains a work in progress some 50 years later. Writing in the tradition of museums as agents of social development, Mariana Lamas states:when we talk about “in the service of society and its development”, it’s quite different. It is like the drunk uncle at the Christmas party that the family pretends is not there, because if they pretend long enough, he might pass out on the couch. (Lamas 47–48)That is not to say that museums have neglected to initiate services and programs that acknowledge the aspirations of people with disabilities (refer to Cachia and Krantz as examples). Without discounting such efforts, but with the refreshing analogy of the drunken uncle still fresh in memory, Lamas answers her own rhetorical question:how can traditional museums promote community development? At first the word “development” may seem too much for the museum to do, but there are several ways a museum can promote community development. (Lamas 52) Legitimising CommunitiesThe first way that museums can foster community or social development is to:help the community to over come [sic] a problem, coming up with different solutions, putting things into a new perspective; providing confidence to the community and legitimizing it. (Lamas 52)As a response, my doctoral investigation legitimises the right of people with vision impairment to participate in the social and cultural aspects of publicly funded museums. The Australian Government upheld this right in 2008 by ratifying the United Nations Convention on the Rights of Persons with Disabilities (and Optional Protocol), which enshrines the right of people with disability to participate in the cultural life of the nation (United Nations).At least 840,700 people in Australia (a minimum of four per cent of the population) experiences either blindness or low vision (Australian Bureau of Statistics 2009). For every one person in the Australian community who is blind, nearly five other people experience low vision. The medical model of disability identifies the impairment as the key feature of a person and seeks out a corrective intervention. In contrast, the social model of disability strives to remove the attitudinal, social, and physical barriers enacted by people or institutions (Landman, Fishburn, and Tonkin 14). Therein lies the opportunity and challenge for museums—modifying layouts and practices that privilege the visual. Consequently, there is scope for museums to partner with people with vision impairment to identify their aspirations rather than respond as a problem to be fixed. Common fixes in the museums for people with disabilities include physical alterations such as ramps and, less often, special tours (Cachia). I posit that curators, as co-creators and major contributors to exhibitions, can be part of a far wider discussion. In the course of doctoral research, I accompanied adults with a wide array of sight impairments into exhibitions at the Museum of Australian Democracy at Old Parliament House, the Australian War Memorial, and the National Museum of Australia. Within the space of the exhibition, the most commonly identified barrier has been the omission of access opportunities to interpreted materials: that is, information about objects on display as well as the wider narratives driving exhibitions. Often, the participant has had to work backwards, from the object itself, to understand the wider topic of the exhibition. If aesthetics is “the way we communicate through the senses” (Thrift 291), then the vast majority of exhibits have been inaccessible from a sensory perspective. For people with low vision (that is, they retain some degree of functioning sight), objects’ labels have often been too small to be read or, at times, poorly contrasted or positioned. Objects have often been set too deep into display cabinets or too far behind safety barriers. If individuals must use personal magnifiers to read text or look in vain at objects, then that is an indicator that there are issues with exhibition design. For people who experience blindness (that is, they cannot see), neither the vast majority of exhibits nor their interpretations have been made accessible. There has been minimal access across all museums to accessioned objects, handling collections, or replicas to tease out exhibits and their stories. Object labels must be read by family or friends—a tiring experience. Without motivated peers, the stories told by curators are silenced by a dearth of alternative options.Rather than presume to know what works for people with disabilities, my research ethos respects the “nothing about us without us” (Charlton 2000; Werner 1997) maxim of disability advocates. To paraphrase Lamas, we have collaborated to come up with different solutions by putting things into new perspectives. In turn, “person-centred” practices based on rapport, warmth, and respect (Arigho 206–07) provide confidence to a diverse community of people by legitimising their right to participate in the museum space. Incentivising Communities Museums can also nurture social or community development by providing incentives to “the community to take action to improve its quality of life” (Lamas 52). It typically falls to (enthusiastic) public education and community outreach teams to engage underserved communities through targeted programs. This approach continues the trend of curators as advocates for the collection, and educators as advocates for the public (Kaitavouri xi). If the exhibition briefs normally written by curators (Belcher 83) reinforced the importance of access, then exhibition designers would be compelled to offer fit-for-purpose solutions. Better still, if curators (and other exhibition team members) regularly met with community based organisations (perhaps in the form of a disability reference group), then museums would be better positioned to accommodate a wider spectrum of community members. The National Standards for Australian Museums and Galleries already encourages museums to collaborate with disability organisations (40). Such initiatives offer a way forward for improving a community’s sense of itself and its quality of life. The World Health Organization defines health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. While I am not using quality of life indicators for my doctoral study, the value of facilitating social and cultural opportunities for my target audience is evident in participant statements. At the conclusion of one sensory based workshop, Mara, a female participant who experiences low vision in one eye and blindness in the other, stated:I think it was interesting in that we could talk together about what we were experiencing and that really is the social aspect of it. I mean if I was left to go to a whole lot of museums on my own, I probably wouldn’t. You know, I like going with kids or a friend visiting from interstate—that sort of thing. And so this group, in a way, replicates that experience in that you’ve got someone else to talk about your impressions with—much better than going on your own or doing this alone.Mara’s statement was in response to one of two workshops I held with the support of the Learning Services team at the National Museum of Australia in May 2015. Selected objects from the museum’s accessioned collection and handling collection were explored, as well as replicas in the form of 3D printed objects. For example, participants gazed upon and handled a tuckerbox, smelt and tasted macadamia nuts in wattle seed syrup, and listened to a genesis story about the more-ish nut recorded by the Butchulla people—the traditional owners of Fraser Island. We sat around a table while I, as the workshop mediator, sought to facilitate free-flowing discussions about their experiences and, in turn, mused on the capacity of objects to spark social connection and opportunities for cultural access. While the workshop provided the opportunity for reciprocal exchanges amongst participants as well as between participants and me, what was highly valued by most participants was the direct contact with members of the museum’s Learning Services team. I observed that participants welcomed the opportunity to talk with real museum workers. Their experience of museum practitioners, to date, had been largely confined to the welcome desk of respective institutions or through special events or tours where they were talked at. The opportunity to communicate directly with the museum allowed some participants to share their thoughts and feelings about the services that museums provide. I suggest that curators open themselves up to such exchanges on a more frequent basis—it may result in reciprocal benefits for all stakeholders. Fortifying IdentityA third way museums can contribute to social or community development is by:fortify[ing] the bonds between the members of the community and reaffirm their identities making them feel more secure about who they are; and give them a chance to tell their own version of their history to “outsiders” which empowers them. (Lamas 52)Identity informs us and others of who we are and where we belong in the world (Silverman 54). However, the process of identity marking and making can be fraught: “some communities are ours by choice … [and] … some are ours because of the ways that others see us” (Watson 4). Communities are formed by identifying who is in and who is out (Francois Dubet qtd. in Bessant and Watts 260). In other words, the construction of collective identity is reinforced through means of social inclusion and social exclusion. The participants of my study, as members or clients of the Royal Society for the Blind | Canberra Blind Society, clearly value participating in events with empathetic peers. People with vision impairment are not a homogenous group, however. Reinforcing the cultural influences on the formation of identity, Fiona Candlin asserts that “to state the obvious but often ignored fact, blind people … [come] … from all social classes, all cultural, racial, religious and educational backgrounds” (101). Irrespective of whether blindness or low vision arises congenitally, adventitiously, or through unexpected illness, injury, or trauma, the end result is an assortment of individuals with differing perceptual characteristics who construct meaning in often divergent ways (De Coster and Loots 326–34). They also hold differing world views. Therefore, “participation [at the museum] is not an end in itself. It is a means for creating a better world” (Assunção dos Santos 9). According to the Australian Human Rights Commissioner, Professor Gillian Triggs, a better world is: a society for all, in which every individual has an active role to play. Such a society is based on fundamental values of equity, equality, social justice, and human rights and freedoms, as well as on the principles of tolerance and embracing diversity. (Triggs)Publicly funded museums can play a fundamental role in the cultural lives of societies. For example, the Powerhouse Museum (Museum of Applied Arts and Sciences) in Sydney partnered with Vision Australia to host an exhibition in 2010 titled Living in a Sensory World: it offered “visitors an understanding of the world of the blindness and low vision community and celebrates their achievements” (Powerhouse Museum). With similar intent, my doctoral research seeks to validate the world of my participants by inviting museums to appreciate their aspirations as a distinct but diverse community of people. ConclusionIn conclusion, the challenge for museum curators and other museum practitioners is balancing what Richard Sennett (qtd. in Bessant and Watts 265) identifies as opportunities for enhancing social cohesion and a sense of belonging while mitigating parochialism and community divisiveness. Therefore, curators, as the primary focus of this article, are indeed challenged when asked to contribute to serving the public through social development—a public which is anything but homogenous. Mindful of cultural and social differences in an ever-changing world, museums are called to respect the cultural and natural heritage of the communities they serve and collaborate with (ICOM 10). It is a position I wholeheartedly support. This is not to say that museums or indeed curators are capable of solving the ills of society. However, inviting people who are frequently excluded from social and cultural events to multisensory encounters with museum collections acknowledges their cultural rights. I suggest that this would be a seismic shift from the current experiences of adults with blindness or low vision at most museums.ReferencesAlexander, Edward, and Mary Alexander. Museums in Motion: An Introduction to the History and Functions of Museums. 2nd ed. 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There have been a number of Australian memoirs written by adoptees over the last twenty years—Robert Dessaix’s A Mother’s Disgrace, Suzanne Chick’s Searching for Charmian, Tom Frame’s Binding Ties:An Experience of Adoption and Reunion in Australia, for example—as well as international adoptee narratives by Betty Jean Lifton, Florence Fisher, and A. M. Homes amongst others. These works form a component of the small but growing field of adoption life writing that includes works by “all members of the adoption triad” (Hipchen and Deans 163): adoptive parents, birthparents, and adoptees. As the broad genre of memoir becomes more theorised and mapped, many sub-genres are emerging (Brien). My own adoptee story (which I am currently composing) could be a further sub-categorisation of the adoptee memoir, that of “late discovery adoptees” (Perl and Markham), those who are either told, or find out, about their adoption in adulthood. When this is part of a life story, secrets and silences are prominent, and digging into these requires using whatever resources can be found. These include cookbooks, recipes written by hand, and the scraps of paper shoved between pages. There are two cookbooks from my adoptive mother’s belongings that I have kept. One of them is titled Miss Tuxford’s Modern Cookery for the Middle Classes: Hints on Modern Gas Stove Cooking, and this was published around 1937 in England. It’s difficult to date this book exactly, as there is no date in my copy, but one of the advertisements (for Bird’s Custard, I think; the page is partly obscured by an Orange Nut Loaf recipe from a Willow baking pan that has been glued onto the page) is headed with a date range of 1837 to 1937. It has that smell of long ago that lingers strongly even now, out of the protective custody of my mother’s storage. Or should I say, out of the range of my adoptive father’s garbage dump zeal. He loved throwing things away, but these were often things that I saw as valuable, or at least of sentimental value, worth keeping for the memories they evoked. Maybe my father didn’t want to remember. My mother was brimming with memories, I discovered after her death, but she did not reveal them during her life. At least, not to me, making objects like these cookbooks precious in my reconstruction of the lives I know so little about, as well as in the grieving process (Gibson).Miss Tuxford (“Diplomée Board of Education, Gold Medallist, etc”) produced numerous editions of her book. My mother’s is now fragile, loose at the spine and browned with age. There are occasional stains showing that the bread and cakes section got the most use, with the pages for main meals of meat and vegetables relatively clean. The author divided her recipes into the main chapters of Soups (lentil, kidney, sheep’s head broth), Sauces (white, espagnol, mushroom), Fish (“It is important that all fish is fresh when cooked” (23)), Meats (roasted, boiled, stuffed; roast rabbit, boiled turkey, scotch collop), Vegetables (creamed beetroot, economical salad dressing, potatoes baked in their skins), Puddings and Sweets (suet pastry, Yorkshire pudding, chocolate tarts, ginger cream), Bread and Cakes (household bread, raspberry sandwich cake, sultana scones, peanut fancies), Icings and Fillings, Invalid Cookery (beef tea, nourishing lemonade, Virol pudding), Jams, Sweetmeats and Pickles (red currant jelly, piccalilli) and Miscellaneous Dishes including Meatless Recipes (cheese omelette, mock white fish, mock duck, mock goose, vegetarian mincemeat). At the back, Miss Tuxford includes sections on gas cooking hints, “specimen household dinners” (206), and household hints. There is then a “Table of Foods in Season” (208–10) taking the reader through the months and the various meats and vegetables available at those times. There is a useful index and finally an advertisement for an oven cleaner on the last page (which is glued to the back cover). There are food and cookery advertisements throughout the book, but my favourite is the one inside the front cover, for Hartley’s jam, featuring two photographs of a little boy. The first shows him looking serious, and slightly anxious, the second wide-eyed and smiling, eager for his jam. The text tells mothers that “there’s nothing like plenty of bread and Hartley’s for a growing boy” (inside front cover). I love the simple appeal to making your little boy happy that is contained within this tiny narrative. Did my mother and father eat this jam when they were small? By 1937, my mother was twenty-one, not yet married, living with her mother in Weston-super-Mare. She was learning secretarial skills—I have her certificate of proficiency in Pitman’s shorthand—and I think she and my father had met by then. Perhaps she thought about when she would be giving her own children Hartley’s jam, or something else prepared from Miss Tuxford’s recipes, like the Christmas puddings, shortbread, or chocolate cake. She would not have imagined that no children would arrive, that twenty-five years of marriage would pass before she held her own baby, and this would be one who was born to another woman. In the one other cookbook I have kept, there are several recipes cut out from newspapers, and a few typed or handwritten recipes hidden within the pages. This is The Main Cookery Book, in its August 1944 reprint, which was written and compiled by Marguerite K. Gompertz and the “Staff of the Main Research Kitchen”. My mother wrote her name and the date she obtained the cookbook (31 January 1945) on the first blank page. She had been married just over five years, and my father may, or may not, have still been in the Royal Air Force. I have only a sketchy knowledge of my adoptive parents. My mother was born in Newent, Gloucestershire, and my father in Bromley, Kent; they were both born during the first world war. My father served as a navigator in the Royal Air Force in the second world war in the 1940s, received head and psychological injuries and was invalided out before the war ended. He spent some time in rehabilitation, there being letters from him to my mother detailing his stay in one hospital in the 1950s. Their life seemed to become less and less secure as the years passed, more chaotic, restless, and unsettled. By the time I came into their lives, they were both nearly fifty, and moving from place to place. Perhaps this is one reason why I have no memory of my mother cooking. I cannot picture her consulting these cookbooks, or anything more modern, or even cutting out the recipes from newspapers and magazines, because I do not remember seeing her do it. She did not talk to me about cooking, we didn’t cook together, and I do not remember her teaching me anything about food or its preparation. This is a gap in my memory that is puzzling. There is evidence—the books and additional paper recipes and stains on the pages—that my mother was involved in the world of the kitchen. This suggests she handled meats, vegetables, and flours, kneaded, chopped, mashed, baked, and boiled all manners of foods. But I cannot remember her doing any of it. I think the cooking must have been a part of her life before me, when she lived in England, her home country, which she loved, and when she still had hope that children would come. It must have then been apparent that her husband was going to need support and care after the war, and I can imagine she came to realise that any dreams she had would need rearranging.What I do remember is that our meals were prepared by my father, and contained no spices, onions, or garlic because he suffered frequently from indigestion and said these ingredients made it worse. He was a big-chested man with small hips who worried he was too heavy and so put himself on diets every other week. For my father, dieting meant not eating anything, which tended to lead to binges on chocolate or cheese or whatever he could grab easily from the fridge.Meals at night followed a pattern. On Sundays we ate roast chicken with vegetables as a treat, then finished it over the next days as a cold accompaniment with salad. Other meals would feature fish fingers, mince, ham, or a cold luncheon meat with either salad or boiled vegetables. Sometimes we would have a tin of peaches in juice or ice cream, or both. No cookbooks were consulted to prepare these meals.What was my mother doing while my father cooked? She must have been in the kitchen too, probably contributing, but I don’t see her there. By the time we came back to Australia permanently in 1974, my father’s working life had come to an end, and he took over the household cookery for something to do, as well as sewing his own clothes, and repairing his own car. He once hoisted the engine out of a Morris Minor with the help of a young mechanic, a rope, and the branch of a poinciana tree. I have three rugs that he wove before I was born, and he made furniture as well. My mother also sewed, and made my school uniforms and other clothes as well as her own skirts and blouses, jackets and pants. Unfortunately, she was fond of crimplene, which came in bright primary colours and smelled of petrol, but didn’t require ironing and dried quickly on the washing line. It didn’t exactly hang on your body, but rather took it over, imposing itself with its shapelessness. The handwritten recipe for salad cream shown on the pink paper is not in my mother’s hand but my father’s. Her correction can be seen to the word “gelatine” at the bottom; she has replaced it with “c’flour” which I assume means cornflour. This recipe actually makes me a liar, because it shows my father writing about using pepper, paprika, and tumeric to make a food item, when I have already said he used no spices. When I knew him, and ate his food, he didn’t. But he had another life for forty-seven years before my birth, and these recipes with their stains and scribbles help me to begin making a picture of both his life, and my mother’s. So much of them is a complete mystery to me, but these scraps of belongings help me inch along in my thinking about them, who they were, and what they meant to me (Turkle).The Main Cookery Book has a similar structure to Miss Tuxford’s, with some variations, like the chapter titled Réchauffés, which deals with dishes using already cooked foodstuffs that only then require reheating, and a chapter on home-made wines. There are also notes at the end of the book on topics such as gas ovens and methods of cooking (boiling, steaming, simmering, and so on). What really interests me about this book are the clippings inserted by my mother, although the printed pages themselves seem relatively clean and uncooked upon. There is a recipe for pickles and chutneys torn from a newspaper, and when I look on the other side I find a context: a note about Charlie Chaplin and the House of Representatives’s Un-American Activities Committee starting its investigations into the influence of Communists on Hollywood. I wonder if my parents talked about these events, or if they went to see Charlie Chaplin’s films. My mother’s diaries from the 1940s include her references to movies—Shirley Temple in Kiss and Tell, Bing Crosby in Road to Utopia—as well as day to day activities and visits to, and from, family and friends, her sinus infections and colds, getting “shock[ed] from paraffin lamp”, food rationing. If my father kept diaries during his earlier years, nothing of them survives. I remember his determined shredding of documents after my mother’s death, and his fear of discovery, that his life’s secrets would be revealed. He did not tell me I had been adopted until I was twenty-three, and rarely spoke of it afterwards. My mother never mentioned it. I look at the recipe for lemon curd. Did my mother ever make this? Did she use margarine instead of butter? We used margarine on sandwiches, as butter was too hard to spread. Once again, I turn over this clipping to read the news, and find no date but an announcement of an exhibition of work by Marc Chagall at the Tate Gallery, the funeral of Sir Geoffrey Fison (who I discover from The Peerage website died in 1948, unmarried, a Baronet and decorated soldier), and a memorial service for Dr. Duncan Campbell Scott, the Canadian poet and prose writer, during which the Poet Laureate of the time, John Masefield, gave the address. And there was also a note about the latest wills, including that of a reverend who left an estate valued at over £50 000. My maternal adoptive grandmother, who lived in Weston-super-Mare across the road from the beach, and with whom we stayed for several months in 1974, left most of her worldly belongings to my mother and nothing to her son. He seems to have been cut out from her life after she separated from her husband, and her children’s father, sometime in the 1920s. Apparently, my uncle followed his father out to Australia, and his mother never forgave him, refusing to have anything more to do with her son for the rest of her life, not even to see her grandchildren. When I knew her in that brief period in 1974, she was already approaching eighty and showing signs of dementia. But I do remember dancing the Charleston with her in the kitchen, and her helping me bathe my ragdoll Pollyanna in a tub in the garden. The only food I remember at her stone house was afternoon tea with lots of different, exotic cakes, particularly one called Neopolitan, with swirls of red and brown through the moist sponge. My grandmother had a long narrow garden filled with flowers and a greenhouse with tomatoes; she loved that garden, and spent a lot of time nurturing it.My father and his mother-in-law were not each other’s favourite person, and this coloured my mother’s relationship with her, too. We were poor for many years, and the only reason we were able to go to England was because of the generosity of my grandmother, who paid for our airfares. I think my father searched for work while we were there, but whether he was successful or not I do not know. We returned to Australia and I went into grade four at the end of 1974, an outsider of sorts, and bemused by the syllabus, because I had moved around so much. I went to eight different primary schools and two high schools, eventually obtaining a scholarship to a private girls’ school for the last four years. My father was intent on me becoming a doctor, and so my life was largely study, which is another reason why I took little notice of what went on in the kitchen and what appeared on the dining table. I would come home from school and my parents would start meal preparation almost straight away, so we sat down to dinner at about four o’clock during the week, and I started the night’s study at five. I usually worked through until about ten, and then read a novel for a little while before sleep. Every parcel of time was accounted for, and nothing was wasted. This schedule continued throughout those four years of high school, with my father berating me if I didn’t do well at an exam, but also being proud when I did. In grades eight, nine, and ten, I studied home economics, and remember being offered a zucchini to taste because I had never seen one before. I also remember making Greek biscuits of some sort for an exam, and the sieve giving out while I was sifting a large quantity of flour. We learned to cook simple meals of meats and vegetables, and to prepare a full breakfast. We also baked cakes but, when my sponges remained flat, I realised that my strengths might lay elsewhere. This probably also contributed to my lack of interest in cooking. Domestic pursuits were not encouraged at home, although my mother did teach me to sew and knit, resulting in skewed attempts at a shirt dress and a white blouse, and a wildly coloured knitted shoulder bag that I actually liked but which embarrassed my father. There were no such lessons in cakemaking or biscuit baking or any of the recipes from Miss Tuxford. By this time, my mother bought such treats from the supermarket.This other life, this previous life of my parents, a life far away in time and place, was completely unknown to me before my mother’s death. I saw little of them after the revelation of my adoption, not because of this knowledge I then had, but because of my father’s controlling behaviour. I discovered that the rest of my adoptive family, who I hardly knew apart from my maternal grandmother, had always known. It would have been difficult, after all, for my parents to keep such a secret from them. Because of this life of constant moving, my estrangement from my family, and our lack of friends and connections with other people, there was a gap in my experience. As a child, I only knew one grandmother, and only for a relatively brief period of time. I have no grandfatherly memories, and none either of aunts and uncles, only a few fleeting images of a cousin here and there. It was difficult to form friendships as a child when we were only in a place for a limited time. We were always moving on, and left everything behind, to start again in a new suburb, state, country. Continuity and stability were not our trademarks, for reasons that are only slowly making themselves known to me: my father’s mental health problems, his difficult personality, our lack of money, the need to keep my adoption secret.What was that need? From where did it spring? My father always seemed to be a secretive person, an intensely private man, one who had things to hide, and seemed to suffer many mistakes and mishaps and misfortune. At the end, after my mother’s death, we spent two years with each other as he became frailer and moved into a nursing home. It was a truce formed out of necessity, as there was no one else to care for him, so thoroughly had he alienated his family; he had no friends, certainly not in Australia, and only the doctor and helping professionals to talk to most days. My father’s brother John had died some years before, and the whereabouts of his other sibling Gordon were unknown. I discovered that he had died three years previously. Nieces had not heard from my father for decades. My mother’s niece revealed that my mother and she had never met. There is a letter from my mother’s father in the 1960s, probably just before he died, remarking that he would like a photograph of her as they hadn’t seen each other for forty years. None of this was talked about when my mother was alive. It was as if I was somehow separate from their stories, from their history, that it was not suitable for my ears, or that once I came into their lives they wanted to make a new life altogether. At that time, all of their past was stored away. Even my very origins, my tiny past life, were unspoken, and made into a secret. The trouble with secrets, however, is that they hang around, peek out of boxes, lurk in the corners of sentences, and threaten to be revealed by the questions of puzzled strangers, or mistakenly released by knowledgeable relatives. Adoptee memoirs like mine seek to go into those hidden storage boxes and the corners and pages of sources like these seemingly innocent old cookbooks, in the quest to bring these secrets to light. Like Miss Tuxford’s cookbook, with its stains and smudges, or the Main Cookery Book with its pages full of clippings, the revelation of such secrets threaten to tell stories that contradict the official version. ReferencesBrien, Donna Lee. “Pathways into an ‘Elaborate Ecosystem’: Ways of Categorising the Food Memoir”. TEXT (October 2011). 12 Jun. 2013 ‹http://www.textjournal.com.au/oct11/brien.htm›.Chick, Suzanne. Searching for Charmian. Sydney: Picador, 1995.Dessaix, Robert. A Mother’s Disgrace. Sydney: Angus & Robertson, 1994.Fisher, Florence. The Search for Anna Fisher. New York: Arthur Fields, 1973.Frame, Tom. Binding Ties: An Experience of Adoption and Reunion in Australia. Alexandria: Hale & Iremonger, 1999.Gibson, Margaret. Objects of the Dead: Mourning and Memory in Everyday Life. Carlton, Victoria: Melbourne U P, 2008. Gompertz, Marguerite K., and the Staff of the Main Research Kitchen. The Main Cookery Book. 52nd. ed. London: R. & A. Main, 1944. Hipchen, Emily, and Jill Deans. “Introduction. Adoption Life Writing: Origins and Other Ghosts”. a/b: Auto/Biography Studies 18.2 (2003): 163–70. Special Issue on Adoption.Homes, A. M. The Mistress’s Daughter: A Memoir. London: Granta, 2007.Kiss and Tell. Dir. By Richard Wallace. Columbia Pictures, 1945.Lifton, Betty Jean. Twice Born: Memoirs of An Adopted Daughter. Middlesex, England: Penguin, 1977.Lundy, Darryl, comp. The Peerage: A Genealogical Survey of the Peerage of Britain as well as the Royal Families of Europe. 30 May 2013 ‹http://www.thepeerage.com/p40969.htm#i409684›Perl, Lynne and Shirin Markham. Why Wasn’t I Told? Making Sense of the Late Discovery of Adoption. Bondi: Post Adoption Resource Centre/Benevolent Society of NSW, 1999.Road to Utopia. Dir. By Hal Walker. Paramount, 1946.Turkle, Sherry, ed. Evocative Objects: Things We Think With. Cambridge, Massachusetts: MIT P, 2011. Tuxford, Miss H. H. Miss Tuxford’s Modern Cookery for the Middle Classes: Hints on Modern Gas Stove Cooking. London: John Heywood, c.1937.