Journal articles on the topic 'Middle-aged persons Employment Australia'

Research on horticultural therapy approaches suggest that its positive impact on clients may extend beyond direct rehabilitation or vocational gains to more generally improved well-being. Persons in rehabilitation programs may relate to gardening as a previously enjoyed past time, or as a new activity for either leisure or employment purposes. While gardening is a popular leisure activity in many countries, few studies have looked at what specific gardening activities community-based populations pursue. As part of a larger mail-out survey looking at gardening interests of mid-aged women, a sub-sample of physically disabled women was compared to healthy age-matched women on gardening activities and interests. Physical and psychological functioning and well-being were also sampled. Both groups completed the SF-36 Health Survey for Australia/New Zealand, the Symptom Checklist-90-Revised, and a gardening questionnaire tapping gardening activities and hours per month on these activities, as well as the reasons for pursuing gardening. Group differences emerged on physical and psychological functioning variables, but for virtually all gardening variables, group differences were minimal. Overall findings suggest that for this sample of mid-aged women, the presence of physical disability or limitation did not adversely affect their access to and enjoyment of gardening activities.

Abstract Hemophilia is an orphan disease whose management requires specialized knowledge of complications and treatments, which adds to the challenge of caring for patients. Knowledge gaps among hematologists, hematologist-oncologists and pediatric oncologists regarding management of hemophilia could negatively impact patient outcomes. Utilizing the National Hemophilia Foundation and the World Federation of Haemophilia guidelines and best practices, a global, hemophilia-specific continuing medical education-accredited clinical practice assessment survey was developed and completed by unselected hematologists and oncologists in order to define current education gaps and assess areas of deviation from guideline and best practices. The assessment included both knowledge- and case -based, multiple-choice questions that healthcare providers completed confidentially on-line between March 21, 2014 and July 2, 2014. Topics ranging from hemophilia severity to management/prevention of bleeds were assessed. Responses from clinicians were de-identified and aggregated prior to analyses. 354 hematologist (51%), hematologist/oncologist (34%) or pediatric oncologists (14%) completed the survey, from the following locales: North America (30%), Europe (25%), Asia (18%), Central/South America (9%), Middle East (7%), Africa (8%), and Australia (2%). Practice settings of participants were academic (53%), community hospital (22%), private practice (12%), hemophilia treatment center (HTC) (5%), community clinic (3%), and other (5%). Respondents demonstrated knowledge (> 88% correct responses) in topics such as: definition of severe hemophilia, identifying life-threatening bleeds, primary prophylaxis dose/schedule, adolescence transitioning, and monitoring after initiating prophylaxis. In contrast, knowledge gaps included: prophylaxis duration; incidence of inhibitors; role of physiotherapy; managing joint bleeds (Table 1). For most responses, the proportion of correct responses appeared to be consistent regardless of physician specialty (hematologists (Group A) versus hematologists/oncologists + pediatric oncologists (Group B)) or practice setting (academic + HTC (Group C) versus community (Group D)). A low level of confidence in ability to identify when to use prophylaxis was reported among 20% [95% CI: 16.74% to 23.26%] of all respondents. Knowledge gaps permeate clinical practice in the care of persons with hemophilia. Most significant gaps were related to incidence of inhibitor development, continuance of prophylaxis, and use of physiotherapy for hemophiliac joint disease. These data support the development and implementation of educational tools for clinicians involved in hemophilia care across a range of practice settings. Abstract 4831. Table 1. Hemophilia Knowledge Gaps for Hematologists, Hematologist/Oncologists, Pediatric Oncologists (% Correct Responses) Survey Assessment Topic All Group A Group B Group A vs Group B p-value Group C Group D Group C vs Group D p-value Prophylaxis Duration 35.9% 34.8% 38.3% 0.55 42.0% 28.4% 0.03 Incidence of Inhibitors 48.3% 51.4% 44.0% 0.20 43.4% 54.3% 0.08 Physiotherapy for Joint Disease 47.4% 50.4% 45.2% 0.40 51.0% 43.3% 0.27 Managing Joint Bleeds 74.2% 73.1% 75.6% 0.64 75.8% 72.2% 0.60 Disclosures Van Laar: Medscape LLC: Employment. Warren:Medscape LLC: Employment. Desai:Medscape LLC: Employment. Fogarty:CSL Behring: Research Funding; Biogen Idec Inc.: Research Funding; Baxter: Research Funding; Pfizer Inc: Consultancy; Chugai Pharma USA: Consultancy; Biogen Idec Inc.: Consultancy; Baxter: Consultancy; Bayer HealthCare Pharmaceuticals: Consultancy; Amgen Inc: Consultancy; Pfizer Inc: Research Funding; Medscape LLC: Honoraria; VindicoMed: Honoraria.

ObjectivesThe first objective of this study was to describe the age-specific prevalence of chronic diseases and multimorbidity among unemployed and employed persons. The second objective was to examine associations of employment status and sociodemographic characteristics with chronic diseases and multimorbidity.DesignData linkage of cross-sectional nationwide registries on employment status, medication use and sociodemographic characteristics in 2016 was applied.SettingRegister-based data covering residents in the Netherlands.Participants5 074 227 persons aged 18–65 years were selected with information on employment status, medication use and sociodemographic characteristics.Outcome measuresMultiple logistic regression analysis and descriptive statistics were performed to examine associations of employment and sociodemographic characteristics with the prevalence of chronic diseases and multimorbidity. The age-specific prevalence of six common chronic diseases was described, and Venn diagrams were applied for multimorbidity among unemployed and employed persons.ResultsUnemployed persons had a higher prevalence of psychological disorders (18.3% vs 5.4%), cardiovascular diseases (20.1% vs 8.9%), inflammatory diseases (24.5% vs 15.8%) and respiratory diseases (11.7% vs 6.5%) than employed persons. Unemployed persons were more likely to have one (OR 1.30 (1.29–1.31)), two (OR 1.74 (1.73–1.76)) and at least three chronic diseases (OR 2.59 (2.56–2.61)) than employed persons. Among unemployed persons, psychological disorders and inflammatory conditions increased with age but declined from middle age onwards, whereas a slight increase was observed among employed persons. Older persons, women, lower educated persons and migrants were more likely to have chronic diseases.ConclusionLarge differences exist in the prevalence of chronic diseases and multimorbidity among unemployed and employed persons. The age-specific prevalence follows a different pattern among employed and unemployed persons, with a relatively high prevalence of psychological disorders and inflammatory conditions among middle-aged unemployed persons. Policy measures should focus more on promoting employment among unemployed persons with chronic diseases.

The healthcare burden of patients with multimorbidity may negatively affect their family lives, leisure time and professional activities. This mixed methods systematic review synthesizes studies to assess how multimorbidity affects the everyday lives of middle-aged persons, and identifies skills and resources that may help them overcome that burden. Two independent reviewers screened title/abstracts/full texts in seven databases, extracted data and used the Mixed Methods Appraisal Tool (MMAT) to assess risk of bias (RoB). We synthesized findings from 44 studies (49,519 patients) narratively and, where possible, quantitatively. Over half the studies provided insufficient information to assess representativeness or response bias. Two studies assessed global functioning, 15 examined physical functioning, 18 psychosocial functioning and 28 work functioning. Nineteen studies explored skills and resources that help people cope with multimorbidity. Middle-aged persons with multimorbidity have greater impairment in global, physical and psychosocial functioning, as well as lower employment rates and work productivity, than those without. Certain skills and resources help them cope with their everyday lives. To provide holistic and dynamic health care plans that meet the needs of middle-aged persons, health professionals need greater understanding of the experience of coping with multimorbidity and the associated healthcare burden.

This survey examined aspects of the support provided by 388 middle-aged respondents to their parents and parents-in-law independently residing in the same city. Burden was found to be relatively low (mean = 8.19 on a 33-point scale), and generally not associated with demographic characteristics of the care provider (sex, age, marital status, number of children, employment status, income, etc.). Higher burden was associated with provision of more support and lower emotional closeness to the parent. More help was provided to women and persons with higher dependency needs. When comparing the most and least burdened caregivers, frail and deteriorating health of the parent seemed to be the critical factor. The relationship between parent and most burdened children was neither as satisfying nor as open as for the least burdened children. Parents of those who were most burdened already were in receipt of more formal services than the parents of the least burdened. Given the relatively low burden reported by the middle-aged offspring, formal programs were not instituted by the social-service agency. However, agencies responsible for providing formal care to the elderly might query the nature of the relationships between their clients and offspring, seeking particular sources of stress and burden which might be alleviated.

This study investigated career patterns among persons with serious psychiatric disabilities who had completed higher education. As part of a vocational program follow-up, 48 middle-aged, mostly white men and women consumers were interviewed about educational and employment histories. A computer program based on age of onset, job skill level, job and educational codes, and dates of employment was developed. Five different, mutually exclusive, career development patterns were identified: (a) career constant with postformal education disability onset, (b) career constant with preformal education completion disability onset, (c) career change with post-formal educational disability onset, (d) career change with pre-formal educational completion disability onset, and (e) early onset with no career. Results were related to current career development theories and the needs of counselors serving this population.

Abstract Aim The Lolland-Falster Health Study (LOFUS) is an ongoing prospective cohort study at Lolland-Falster, one of the most socio-economically disadvantaged areas of Denmark. The aim of this study was to examine the participation rates and socio-economic determinants of participation in LOFUS, approximately halfway through the data collection. Subjects and methods LOFUS started in 2016 and should include 20,000 participants from the total of 103,000 inhabitants of Lolland-Falster by the end of 2019. For the participation analyses, we used data on the 36,883 subjects invited between January 2016 and November 2018. For the analyses of determinants of participation, we used data on the 24,283 adults (aged ≥ 18 years) invited between January 2016 and June 2018, for whom we extracted data on personal income, employment, education, marital status, citizenship, and household type from Danish registers. We used logistic regression to estimate associations between socio-economic factors and participation, adjusting for age and gender. Results 34.1% of invited subjects participated (men: 31.9%, women: 36.4%), with the highest rate in women aged 60–69 years (47.5%) and the lowest in women aged ≥ 90 years (7.3%). Odds ratios for participation increased with income, education level, and employment status, and among married persons, Danish citizens, middle-aged persons (aged 50–69 years), and women. Conclusion Subjects with lower socio-economic status were underrepresented halfway through the LOFUS data collection, in line with other cohort studies.

ABSTRACTBackground:Globally, suicide rates increase with age, being highest in older adults. This study analyzed differences in suicides in older adults (65 years and over) compared to middle-aged adults (35–64 years) in Queensland, Australia, during the years 2000–2012.Methods:The Queensland Suicide Register was utilized for the analysis. Annual suicide rates were calculated by gender and age group, and odds ratios with 95% confidence intervals were examined.Results:In Queensland, the average annual rate of suicides for older adults was 15.27 per 100,000 persons compared to 18.77 in middle-aged adults in 2000–2012. There were no significant changes in time trends for older adults in 2002–2012. Suicide methods differed between gender and age groups. Older adults who died by suicide were more likely to be male, widowed, living alone or in a nursing home, and out of the work force. The prevalence of untreated psychiatric conditions, diagnosed psychiatric disorders, and consultations with a mental health professional three months prior to death was lower in older adults than middle-aged adults. Somatic illness, bereavement, and attention to suicide in the media were more common among older adults than middle-age adults. Older females were particularly more likely to pay attention to suicide in the media.Conclusion:Our findings show older adults who died by suicide were more likely to experience somatic illnesses, bereavement, and pay attention to suicide in the media compared to middle aged. Preventing suicide in older adults would therefore require holistic and comprehensive approaches.

Purpose Becoming self-employed has appeal to both genders. For many women, balancing work and family is a key motivator. However, businesses owned and operated by women are often very small, with limited turnover. This potentially can have disastrous consequences when these women come to retire, unless a solid retirement savings strategy has been considered. The purpose of this paper is to outline many of the issues and implications of a lack of research in this area. Design/methodology/approach Data were collected from 201 small business owners via a convenience sample derived from various databases. The survey was completed on-line and analysed using SPSS. Findings Many self-employed women in Australia have neither enough savings for their retirement, or an actual retirement plan. This is exacerbated by the lack of regulation requiring mandatory contributions into a superannuation (personal pension) fund by small business owners, unlike pay as you go employees, whose employers must contribute a certain about on their behalf. Social implications Middle-to-older aged women are the biggest cohort of homeless people in Australia. This is likely to grow as self-employed Baby Boomers stop working and find they do not have sufficient personal financial resources to fund their retirement. Originality/value Whereas there is much written about gender and small business ownership, as well as retirement and savings planning, these two areas have not been researched before in Australia. Yet it is an issue for the majority of small business owners, particularly women.

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

Background Young people with refugee experiences are widely acknowledged as encountering multiple disadvantages that affect their school completion and retention, university entry, and subsequent employment. This paper discusses the rationale for and protocol of a mixed methods investigation focusing on improving education and employment outcomes among refugee background youth aged 15 to 24 years from three focus regions: the Middle East (Afghanistan, Iran, Iraq, Syria), South Asia (Nepal, Bhutan, Myanmar/Burma, Pakistan) and Africa (Sudan, South Sudan, Liberia, Ethiopia, Somalia, DR Congo). Objective The rationale of the project is to identify the facilitators and barriers to successful transition from school to further education and employment; investigate participant awareness of support systems available when faced with education and employment difficulties; redress the disadvantages encountered by refugee background youth; and bridge the gap between research, policy, and practice in relation to social inclusion and participation. Methods The study involves collecting survey data from 600 youth followed by individual interviews with a subset of 60 youth, their parents/primary caregivers, and their teachers. A cross-sectional survey will assess facilitators and barriers to successful transition from school to further education and employment. Individual interviews will provide context-rich data on key issues relevant to education and employment outcomes. Results The study began in 2016 and is due for completion by the end of 2019. The quantitative survey has been conducted with 635 participants and was closed in March 2019. The qualitative interview stage is ongoing, and the current total in April 2019 is 93 participants including educators, youth, and family members of the youth. Analysis and presentation of results will be available in 2020. Some preliminary findings will be available during the late half of 2019. Conclusions This project will contribute new and unique insights to knowledge in relation to key factors influencing education and employment outcomes among refugee youth. This research will enable effective planning for the needs of some of Australia’s most disadvantaged and marginalized young people, leading to a sustainable improvement in the education and employability of young refugees. International Registered Report Identifier (IRRID) DERR1-10.2196/12632

Background. This paper reports population data on DSM-IV generalized anxiety disorder from the Australian National Survey of Mental Health and Well-Being.Methods. The data were obtained from a nationwide household survey of adults using a stratified multi-stage sampling process. A response rate of 78·1% resulted in 10641 persons being interviewed. Diagnoses were made using the Composite International Diagnostic Interview. The interview was computerized and conducted by trained lay interviewers.Results. Prevalence in the total sample was 2·8% for 1-month GAD and 3·6% for 12-month GAD. Persons over 55 years of age were less likely to have GAD than those in the younger age groups. Logistic regression analysis also showed that a diagnosis of GAD was significantly associated with being of younger to middle age, being separated divorced or widowed, not having tertiary qualifications or being unemployed. Co-morbidity with another affective, anxiety, substance use or personality disorders was common, affecting 68% of the sample with 1-month DSM-IV GAD. GAD was associated with significant disablement, and 57% of the sample with DSM-IV GAD had consulted a health professional for a mental health problem in the prior 12 months.Conclusions. The survey provides population data on DSM-IV GAD and its correlates. GAD is a common disorder that is accompanied by significant morbidity and high rates of co-morbidity with affective and anxiety disorders, and is associated with marital status, education, employment status, but not sex. Changes to DSM-IV diagnostic criteria did not appear to affect the prevalence rate compared to previous population surveys.

ObjectiveThe COVID-19 situation in Thailand was controlled with various social measures. Much of the information covered in the media and in studies focused on the public health and economic aspects of the pandemic. This study aimed to explore the psychological well-being of older people, which is important especially in an ageing society categorised as low income or middle income due to the limits of economic and healthcare resources.SettingThe impact of COVID-19 on older persons in Thailand, an online survey, taken across nine provinces within the five regions of the country.ParticipantsInformation was collected from 1230 adults aged at least 60 years old.If an older person was illiterate, unable to access the internet or had a disability preventing them from responding to the survey, an intermediary residing in the community conducted the survey interview.Primary and secondary outcome measuresThe analysis focused on the worries of older adults and the factors associated with psychological distress experienced during the pandemic using logistic regression analysis.ResultsThe majority of people aged at least 60 years old experienced psychological distress during COVID-19. Employment loss (OR 1.08, 95% CI 0.78 to 1.38), inadequate income (OR 1.77, 95% CI 1.28 to 2.44) and debt incursion (OR 2.74, 95% CI 1.57 to 4.80) were detrimental to psychological well-being. The negative changes in the perception of their health status (OR 1.92, 95% CI 1.23 to 2.99) and decreased life satisfaction (OR 1.49, 95% CI 0.45 to 1.87) also weighed on older Thais. The protective factors for psychological well-being were residing in rural areas (OR 0.46, 95% CI 0.35 to 0.61) and being married (OR 0.75, 95% CI 0.55 to 1.01).ConclusionObserving the concerns of the older population is important for introducing policies that can alleviate their precarious financial and health statuses.

ObjectivesTo examine the long-term outcomes for patients hospitalised with chronic diseases at age 30, 40 or 50 years.DesignNationwide, population-based cohort study.SettingAll Danish hospitals, 1979–1989, with follow-up through 2014.ParticipantsPatients hospitalised during the study period with one, two or three or more chronic diseases and age-matched and sex-matched persons from the general population without chronic disease leading to hospitalisation: age-30 group: 13 857 patients and 69 285 comparators; age-40 group: 24 129 patients and 120 645 comparators; and age-50 group, 37 807 patients and 189 035 comparators.Main outcome measuresTwenty-five-year mortality risks based on Kaplan-Meier estimates, years-of-life-lost (YLLs) and mortality rate ratios based on Cox regression analysis. YLLs were computed for each morbidity level, as well as in strata of income, employment, education and psychiatric conditions.ResultsTwenty-five-year mortality risks and YLLs increased steadily with increasing number of morbidities leading to hospitalisation and age, but the risk difference with general population comparators remained approximately constant across age cohorts. In the age-30 cohort, the risk differences for patients compared with comparators were 35.0% (95% CI 32.5 to 37.5) with two diseases and 62.5% (54.3% to 70.3%) with three or more diseases. In the age-50 cohort, these differences were, respectively, 48.4% (47.4 to 49.3) and 61.7% (60.1% to 63.0%). Increasing morbidity burden augmented YLLs resulting from low income, unemployment, low education level and psychiatric conditions. In the age-30 cohort, YYLs attributable to low income were 2.4 for patients with one disease, 6.2 for patients with two diseases and 11.5 for patients with three or more diseases.ConclusionsAmong patients with multiple chronic diseases, the risk of death increases steadily with the number of chronic diseases and with age. Multimorbidity augments the already increased mortality among patients with low socioeconomic status.

We consider the current issue of assessing the mental well-being of persons in a situation of forced unemployment. Since the peculiarities of resolving the situation of job loss are associated with individual characteristics of a person due to the experience of his subjective activity and conscious behavior self-regulation, attention is focused on the attitude of the unemployed to career and life. Based on the identified socio-psychological characteristics of individual age groups, the psychological characteristics of middle-aged unemployed are highlighted, taking into account the signs of a midlife crisis that are characteristic of almost all persons of this age, and the characteristics caused by the employment crisis. The unemployment crisis can act as a negative factor preventing the resolution of the regulatory crisis and aggravating it, especially among the unemployed who have a low level of mental well-being. Despite the theoretical elaboration of the issue of determining the unemployed psychological characteristics, the issue of studying the attitude to the career of the unemployed with different mental well-being levels remains insufficiently disclosed, which determines this study issue. Mental well-being as an existential experience of a person acts as an indicator of the attitude of the unemployed to being, is a combination of positive and negative emotions based on an integrated assessment of being, an indicator of the stability of the unemployed, demonstrating subjective activity aimed at personal and professional growth. We present results of the study of the attitude of the unemployed to a career, consider the factors of attitude to life affecting the mental well-being level.

The urgency of the problem is due to the significant increase in recent years in the number of young and middle-aged people who have passed the war, the need to develop adequate measures of social assistance and protection. An important task in the organization of the rehabilitation process is to determine the structure of the needs of servicemen with disabilities in various types of medical and social care and the development of individual rehabilitation programs (IRP) based on them. The purpose of the study: to determine the structure of the needs of servicemen with disabilities in medical and social rehabilitation depending on the severity of disability. Statistical data from 25 administrative territories of Ukraine for 2018 are analyzed, the needs of participants of military service with disabilities in medical and social rehabilitation measures, their structure are calculated. The data of the information base of the centers and the bureau of medical and social examination of the regions were used. Processing of the primary material was performed using the universal statistical package "Excel". In 2018, medical and social expert commissions (MSEC) of Ukraine for the first time and re-certified and recognized persons with disabilities 7843 combatants. Of these, disability of group I (IA and IB) was established in 2.6 %, II – in 29.2 %, III – in 68.2 % of cases. All victims for MSEC were formed IRP. The dependence of the needs of combatants in medical and social rehabilitation measures on the severity of disability has been established. For persons with disabilities of groups II and III, priority is given to medical and professional rehabilitation, group I – social rehabilitation and technical means of rehabilitation with medical support. Of the medical rehabilitation services for persons with II and III groups of disability, sanatorium treatment is significant, and group I – rehabilitation therapy. Among vocational rehabilitation services, employment in production conditions is important – for persons with group III disabilities, in specially created conditions – for persons with group II disabilities, at home – for persons with group I disabilities. Vocational training was offered to a small number of people with disabilities of all groups. Among social rehabilitation services and technical means of rehabilitation, the services of social workers of territorial social service centers were significant for representatives of all disability groups, simpler means of transportation for persons of group III disability and more complex means for persons of group I. Determining the characteristics of the needs of servicemen with disabilities depending on its severity allows MSEC specialists to better form the IRP, develop targeted rehabilitation programs at the regional level, assess shortcomings in the organization of the rehabilitation process and build a rehabilitation system for combatants.

Background<br />In Indonesia the number of persons with type 2 diabetes mellitus (T2DM) was 8.5 million in 2013, and is estimated to be 11.8 million in 2030. The aim of this study was to determine the major risk factors associated with T2DM prevalence in urban aged &gt;15 years.<br /><br />Methods<br />An observational study with cross-sectional design was used with the data from Riskesdas 2007 and 2013 on population aged &gt;15 years. Total respondents were 294,352 (2007) and 368,281 (2013). Data were collected by trained personnel through interviews, blood pressure and anthropometry measurements, and blood glucose and lipid tests. Odds ratio (OR) was used to test the relationship between T2DM and a number of other variables. Multiple logistic regression analysis was obtained to determine the main risk factor associated with T2DM prevalence.<br /><br />Results<br />Type 2 diabetes mellitus prevalence increased from 2.3% (2007) to 2.5% (2013). T2DM tended to be increased in the younger age groups. Low education, middle-to-high economic status, less physical activity, smoking &gt;200 cigarettes, and high risk blood lipid levels were strongly associated with T2DM prevalence. The main risk factors were inadequate physical activity (2007: OR 1.9;95% CI:1.16–2.98 and 2013: OR 2.44;95% CI: 1.57-3.78) and central obesity (2007: OR 1.8;95% CI:0.99–3.10, and 2013:OR 3.84; 95% CI: 2.49-5.93) after controlling for age, gender, employment and economic status.<br /><br />Conclusions<br />Type 2 diabetes mellitus prevalence in the population aged &gt;15 years increased within 5 years. Lack of physical activity and central obesity were the major risk factors of T2DM prevalence in urban adults.

Background: A wish to die is common in elderly people. Concerns about death wishes among the elderly have risen in Ghana, where the ageing transition is comparable to other low-and middle-income countries. However, nationally representative research on death wishes in the elderly in the country is not readily available. Our study aimed to assess the determinants of the wish to die among the elderly in Ghana. Methods: We analysed data from the World Health Organisation Global Ageing and Adult Health Survey, Wave 1 (2007–2008) for Ghana. Data on the wish to die, socio-demographic profiles, health factors and substance abuse were retrieved from 2147 respondents aged 65 and above. Ages of respondents were categorised as 65–74 years; 75–84 years; 85+ to reflect the main stages of ageing. Logistic regression models were fitted to assess the association between these factors and the wish to die. Results: Age, sex, place of residence, education, body mass index, hypertension, stroke, alcohol consumption, tobacco use, income, diabetes, visual impairment, hopelessness and depression had statistically significant associations with a wish to die. Older age cohorts (75–84 and 85+) were more likely to have the wish to die (AOR = 1.05, CI = 1.02–1.16; AOR = 1.48, CI = 1.22–1.94), compared to younger age cohorts (65–74 years). Persons who felt hopeless had higher odds (AOR = 2.15, CI = 2.11–2.20) of experiencing the wish to die as compared to those who were hopeful. Conclusions: In view of the relationship between socio-demographic (i.e., age, sex, education and employment), hopelessness, anthropometric (body mass index), other health factors and the wish to die among the elderly in Ghana, specific biopsychosocial health promotion programmes, including timely identification of persons at risk, for appropriate intervention (e.g., psychotherapy, interpersonal support, alcohol-tobacco cessation therapy, clinical help) to promote their wish for a longer life is needed.

Objective: To evaluate the effects of the eight-week consumption of Theracurmin® on liver function, fatigue, and sleep.Methods: This was a randomized, double-blind, placebo-controlled, parallel-comparison study involving 68 healthy Japanese adults. Subjects were allocated into either the active (Theracurmin®) or placebo group (n = 34 each) using a random number generator. Subjects consumed two capsules per day of either the active or placebo food for eight weeks. The primary outcome was the serum alanine aminotransferase (ALT) levels at eight weeks, whereas the secondary outcomes were the biomarkers of liver function, comparison of the percentages of improvement in liver function based on the decision criteria, OSA sleep inventory MA version (OSA-MA), and visual analog scale of fatigue.Results: Each group included 33 subjects in the full analysis set. ALT levels in the per protocol set analysis, except for subjects drinking quantities of alcohol that increase the risk of lifestyle-related disease onset, showed a significant decrease in ALT compared to the placebo group (P < 0.05). The subjective symptom in the fatigue recovery factor of OSA-MA was significantly improved through the intervention (P < 0.05). The fatigue recovery effect of Theracurmin® was prominent in the subjects aged ≤ 45 years, the age group defined by the Ministry of Health, Labour and Welfare as middle-aged and older persons in the Act on Stabilization of Employment of Elderly. No adverse event was observed.Conclusions: These results suggest that the consumption of Theracurmin® or eight weeks improved liver function and fatigue recovery at awakening in healthy Japanese adults.Trial registration: UMIN-CTR: UMIN000039319.Foundation: Theravalues CorporationKeywords: highly bioavailable curcumin, liver function, alanine aminotransferase (ALT), OSA sleep inventory MA version, fatigue recovery

Research development (RD) is a relatively new area of professional practice in and outside higher education for which “the full extent of practitioner purposes and practices is yet to be delineated” (Preuss, Eck, Fechner Walker, 2018, p. 2). To address this gap, data was compiled from 442 position descriptions, two surveys that asked about the background, experience, employers, roles, responsibilities, and salaries of RD professionals, and the membership roll of the National Organization of Research Development Professionals (NORDP). Quantitative and qualitative analyses were completed as well as comparisons of findings from each of the sources. The result was an overview of the field and the persons who work in it. The average research development professional was a middle-aged, White, female with six or less years of experience in RD who held an advanced degree, who worked full time in a position she had occupied for four years or less and for an entity where she had been employed for longer than four years. More than 75% of the RD professionals were women but minorities were underrepresented as in many other areas of higher education and in STEM-related fields. More than half of the informants were recruited to, grew into, or had positions created for them in RD by their employer rather than being recruited from outside the organization. Approximately 72% of research development professionals in the United States worked at public colleges or universities in 2017, with the same percent working for doctorate-granting institutions. Their employers were located in 49 US states and one territory but there was a group of 14 states in which two-thirds of all known RD professionals could be found. There was also a tendency for large state and private universities that have more selective admission policies and a strong and extended focus on conducting research to employ groups of five or more RD professionals. RD professionals hold positions with a wide range of responsibilities, 62 were demonstrated to be part of the field. The data substantiated that these can be grouped in four categories already used by practitioners, strategic research advancement, communicating about research and research priorities, enhancing collaboration, and support of proposal production. Evidence of employment tiers and development of areas of specialization was found with statistically significant differences in responsibilities demonstrated between persons with the title Director and Proposal Developer/Grant Writer. RD offices tended to be small, most commonly staffed by one to two persons. Centralized offices were the type most frequently reported, 37.6% of respondents, but seven other organizing patterns existed. RD offices with five or more employees occurred at larger, flagship institutions that have had an historic focus on externally-funded research yet, over half of research development offices were reported to have existed for six years or less. Compensation reported for research development professionals was comparable to that noted by McDonald and Sorensen (2015) for Assistant and Associate Professors. Combined, the data facilitated formulation of the first detailed definition of research development that is fully evidence-based including identifying RD’s contribution to the mission of higher education and an operational description of how RD is practiced.

It was the Canadian philosopher Marshall McLuhan who first introduced the term ‘global village’ into the lexicon, almost fifty years ago. He was referring to the phenomenon of global interconnectedness of which we are all too aware today. At that time, we were witnessing the world just opening up. In 1946, British Airways had commenced a twice weekly service from London to New York. The flight involved one or two touch downs en-route and took a scheduled 19 hours and 45 minutes. By the time McLuhan had published his book “Understanding media; the extensions of man”, there were regular services by jet around the globe. London to Sydney was travelled in just under 35 hours. Moving forward to a time immediately pre-covid, there were over 30 non-stop flights a day in each direction between London and New York. The travel time from London to Sydney had been cut by a third, to slightly under 22 hours, with just one touchdown en-route. The world has well and truly ‘opened up’. No place is unreachable by regular services. But that is just one part of the picture. In 1962, the very first live television pictures were transmitted across the Atlantic, via satellite. It was a time when sports’ fans would tune in besides a crackling radio set to hear commentary of their favourite game relayed from the other side of the world. Today of course, not only can we watch a live telecast of the Olympic Games in the comfort of our own homes wherever the games are being held, but we can pick up a telephone and talk face to face with friends and relatives in real time, wherever they may be in the world. To today’s generation – generation Z – this does not seem in the least bit remarkable. Indeed, they have been nicknamed ‘the connected generation’ precisely because such a degree of human interconnectedness no longer seems worth commenting on. The media technology and the transport advances that underpin this level of connectedness, have become taken for granted assumptions to them. This is why the global events of 2020 and the associated public health related reactions, have proved to be so remarkable to them. It is mass travel and the closeness and variety of human contact in day-to-day interactions, that have provided the breeding ground for the pandemic. Consequently, moving around and sharing close proximity with many strangers, have been the activities that have had to be curbed, as the initial primary means to manage the spread of the virus. This has caused hardship to many, either through the loss of a job and the associated income or, the lengthy enforced separation from family and friends – for the many who find themselves living and working far removed from their original home. McLuhan’s powerful metaphor was ahead of its time. His thoughts were centred around media and electronic communications well prior to the notion of a ‘physical’ pandemic, which today has provided an equally potent image of how all of our fortunes have become intertwined, no matter where we sit in the world. Yet it is this event which seems paradoxically to have for the first time forced us to consider more closely the path of progress pursued over the last half century. It is as if we are experiencing for the first time the unleashing of powerful and competing forces, which are both centripetal and centrifugal. On the one hand we are in a world where we have a World Health Organisation. This is a body which has acted as a global force, first declaring the pandemic and subsequently acting in response to it as a part of its brief for international public health. It has brought the world’s scientists and global health professionals together to accelerate the research and development process and develop new norms and standards to contain the spread of the coronavirus pandemic and help care for those affected. At the same time, we have been witnessing nations retreating from each other and closing their borders in order to restrict the interaction of their citizens with those from other nations around the world. We have perceived that danger and risk are increased by international travel and human to human interaction. As a result, increasingly communication has been carried out from the safety and comfort of one’s own home, with electronic media taking the place of personal interaction in the real world. The change to the media dominated world, foreseen by McLuhan a half century ago, has been hastened and consolidated by the threats posed by Covid 19. Real time interactions can be conducted more safely and more economically by means of the global reach of the internet and the ever-enhanced technologies that are being offered to facilitate that. Yet at a geopolitical level prior to Covid 19, the processes of globalism and nationalism were already being recognised as competing forces. In many countries, tensions have emerged between those who are benefitting from the opportunities presented by the development of free trade between countries and those who are invested in more traditional ventures, set in their own nations and communities. The emerging beneficiaries have become characterised as the global elites. Their demographic profile is one associated with youth, education and progressive social ideas. However, they are counter-balanced by those who, rather than opportunities, have experienced threats from the disruptions and turbulence around them. Among the ideas challenged, have been the expected certainties of employment, social values and the security with which many grew up. Industries which have been the lifeblood of their communities are facing extinction and even the security of housing and a roof over the heads of self and family may be under threat. In such circumstances, some people may see waves of new immigrants, technology, and changing social values as being tides which need to be turned back. Their profile is characterised by a demographic less equipped to face such changes - the more mature, less well educated and less mobile. Yet this tension appears to be creating something more than just the latest version of the generational divide. The recent clashes between Republicans and Democrats in the US have provided a very potent example of these societal stresses. The US has itself exported some of these arenas of conflict to the rest of the world. Black lives Matter and #Me too, are social movements with their foundation in the US which have found their way far beyond the immediate contexts which gave them birth. In the different national settings where these various tensions have emerged, they have been characterised through labels such as left and right, progressive and traditional, the ‘haves’ versus the ‘have nots’ etc. Yet common to all of this growing competitiveness between ideologies and values is a common thread. The common thread lies in the notion of competition itself. It finds itself expressed most potently in the spread and adoption of ideas based on what has been termed the neoliberal values of the free market. These values have become ingrained in the language and concepts we employ every day. Thus, everything has a price and ultimately the price can be represented by a dollar value. We see this process of commodification around us on a daily basis. Sports studies’ scholars have long drawn attention to its continuing growth in the world of sport, especially in situations when it overwhelms the human characteristics of the athletes who are at the very heart of sport. When the dollar value of the athlete and their performance becomes more important than the individual and the game, then we find ourselves at the heart of some of the core problems reported today. It is at the point where sport changes from an experience, where the athletes develop themselves and become more complete persons experiencing positive and enriching interactions with fellow athletes, to an environment where young athletes experience stress and mental and physical ill health as result of their experiences. Those who are supremely talented (and lucky?) are rewarded with fabulous riches. Others can find themselves cast out on the scrap heap as a result of an unfair selection process or just the misfortune of injury. Sport as always, has proved to be a mirror of life in reflecting this process in the world at large, highlighting the heights that can be climbed by the fortunate as well as the depths that can be plumbed by the ill-fated. Advocates of the free-market approach will point to the opportunities it can offer. Figures can show that in a period of capitalist organised economies, there has been an unprecedented reduction in the amount of poverty in the world. Despite rapid growth in populations, there has been some extraordinary progress in lifting people out of extreme poverty. Between 1990 and 2010, the numbers in poverty fell by half as a share of the total population in developing countries, from 43% to 21%—a reduction of almost 1 billion people (The Economist Leader, June 1st, 2013). Nonetheless the critics of capitalism will continue to point to an increasing gap between the haves and don’t haves and specifically a decline in the ‘middle classes’, which have for so long provided the backbone of stable democratic societies. This delicate balance between retreating into our own boundaries as a means to manage the pandemic and resuming open borders to prevent economic damage to those whose businesses and employment depend upon the continuing movement of people and goods, is one which is being agonised over at this time in liberal democratic societies around the world. The experience of the pandemic has varied between countries, not solely because of the strategies adopted by politicians, but also because of the current health systems and varying social and economic conditions of life in different parts of the world. For many of us, the crises and social disturbances noted above have been played out on our television screens and websites. Increasingly it seems that we have been consuming our life experiences in a world dominated by our screens and sheltered from the real messiness of life. Meanwhile, in those countries with a choice, the debate has been between public health concerns and economic health concerns. Some have argued that the two are not totally independent of each other, while others have argued that the extent to which they are seen as interrelated lies in the extent to which life’s values have themselves become commodified. Others have pointed to the mental health problems experienced by people of all ages as a result of being confined for long periods of time within limited spaces and experiencing few chances to meet with others outside their immediate household. Still others have experienced different conditions – such as the chance to work from home in a comfortable environment and be freed from the drudgery of commuting in crowded traffic or public transport. So, at a national/communal level as well as at an individual level, this international crisis has exposed people to different decisions. It has offered, for many, a chance to recalibrate their lives. Those who have the resources, are leaving the confines of the big capital cities and seeking a healthier and less turbulent existence in quieter urban centres. For those of us in what can be loosely termed ‘an information industry’, today’s work practices are already an age away from what they were in pre-pandemic times. Yet again, a clear split is evident. The notion of ‘essential industries’ has been reclassified. The delivery of goods, the facilitation of necessary purchase such as food; these and other tasks have acquired a new significance which has enhanced the value of those who deliver these services. However, for those whose tasks can be handled via the internet or offloaded to other anonymous beings a readjustment of a different kind is occurring. So to the future - for those who have suffered ill-health and lost loved ones, the pandemic only reinforces the human priority. Health and well-being trumps economic health and wealth where choices can be made. The closeness of human contact has been reinforced by the tales of families who have been deprived of the touch of their loved ones, many of whom still don’t know when that opportunity will be offered again. When writing our editorial, a year ago, I little expected to be still pursuing a Covid related theme today. Yet where once we were expecting to look back on this time as a minor hiccough, with normal service being resumed sometime last year, it has not turned out to be that way. Rather, it seems that we have been offered a major reset opportunity in the way in which we continue to progress our future as humans. The question is, will we be bold enough to see the opportunity and embrace a healthier more equitable more locally responsible lifestyle or, will we revert to a style of ‘progress’ where powerful countries, organisations and individuals continue to amass increased amounts of wealth and influence and become increasingly less responsive to the needs of individuals in the throng below. Of course, any retreat from globalisation as it has evolved to date, will involve disruption of a different kind, which will inevitably lead to pain for some. It seems inevitable that any change and consequent progress is going to involve winners and losers. Already airline companies and the travel industry are putting pressure on governments to “get back to normal” i.e. where things were previously. Yet, in the shadow of widespread support for climate activism and the extinction rebellion movement, reports have emerged that since the lockdowns air pollution has dropped dramatically around the world – a finding that clearly offers benefits to all our population. In a similar vein the impossibility of overseas air travel in Australia has resulted in a major increase in local tourism, where more inhabitants are discovering the pleasures of their own nation. The transfer of their tourist and holiday dollars from overseas to local tourist providers has produced at one level a traditional zero-sum outcome, but it has also been accompanied by a growing appreciation of local citizens for the wonders of their own land and understanding of the lives of their fellow citizens as well as massive savings in foregone air travel. Continuing to define life in terms of competition for limited resources will inevitably result in an ever-continuing run of zero-sum games. Looking beyond the prism of competition and personal reward has the potential to add to what Michael Sandel (2020) has termed ‘the common good’. Does the possibility of a reset, offer the opportunity to recalibrate our views of effort and reward to go beyond a dollar value and include this important dimension? How has sport been experiencing the pandemic and are there chances for a reset here? An opinion piece from Peter Horton in this edition, has highlighted the growing disconnect of professional sport at the highest level from the communities that gave them birth. Is this just another example of the outcome of unrestrained commodification? Professional sport has suffered in the pandemic with the cancelling of fixtures and the enforced absence of crowds. Yet it has shown remarkable resilience. Sport science staff may have been reduced alongside all the auxiliary workers who go to make up the total support staff on match days and other times. Crowds have been absent, but the game has gone on. Players have still been able to play and receive the support they have become used to from trainers, physiotherapists and analysts, although for the moment there may be fewer of them. Fans have had to rely on electronic media to watch their favourites in action– but perhaps that has just encouraged the continuing spread of support now possible through technology which is no longer dependent on personal attendance through the turnstile. Perhaps for those committed to the watching of live sport in the outdoors, this might offer a chance for more attention to be paid to sport at local and community levels. Might the local villagers be encouraged to interrelate with their hometown heroes, rather than the million-dollar entertainers brought in from afar by the big city clubs? To return to the village analogy and the tensions between global and local, could it be that the social structure of the village has become maladapted to the reality of globalisation? If we wish to retain the traditional values of village life, is returning to our village a necessary strategy? If, however we see that today the benefits and advantages lie in functioning as one single global community, then perhaps we need to do some serious thinking as to how that community can function more effectively for all of its members and not just its ‘elites’. As indicated earlier, sport has always been a reflection of our society. Whichever way our communities decide to progress, sport will have a place at their heart and sport scholars will have a place in critically reflecting the nature of the society we are building. It is on such a note that I am pleased to introduce the content of volume 43:1 to you. We start with a reminder from Hoyoon Jung of the importance of considering the richness provided by a deep analysis of context, when attempting to evaluate and compare outcomes for similar events. He examines the concept of nation building through sport, an outcome that has been frequently attributed to the conduct of successful events. In particular, he examines this outcome in the context of the experiences of South Africa and Brazil as hosts of world sporting events. The mega sporting event that both shared was the FIFA world cup, in 2010 and 2014 respectively. Additional information could be gained by looking backwards to the 1995 Rugby World Cup in the case of South Africa and forward to the 2016 Olympics with regard to Brazil. Differentiating the settings in terms of timing as well as in the makeup of the respective local cultures, has led Jung to conclude that a successful outcome for nation building proved possible in the case of South Africa. However, different settings, both economically and socially, made it impossible for Brazil to replicate the South African experience. From a globally oriented perspective to a more local one, our second paper by Rafal Gotowski and Marta Anna Zurawak examines the growth and development, with regard to both participation and performance, of a more localised activity in Poland - the Nordic walking marathon. Their analysis showed that this is a locally relevant activity that is meeting the health-related exercise needs of an increasing number of people in the middle and later years, including women. It is proving particularly beneficial as an activity due to its ability to offer a high level of intensity while reducing the impact - particularly on the knees. The article by Petr Vlček, Richard Bailey, Jana Vašíčková XXABSTRACT Claude Scheuer is also concerned with health promoting physical activity. Their focus however is on how the necessary habit of regular and relevant physical activity is currently being introduced to the younger generation in European schools through the various physical education curricula. They conclude that physical education lessons, as they are currently being conducted, are not providing the needed 50% minimum threshold of moderate to vigorous physical activity. They go further, to suggest that in reality, depending on the physical education curriculum to provide the necessary quantum of activity within the child’s week, is going to be a flawed vision, given the instructional and other objectives they are also expected to achieve. They suggest implementing instead an ‘Active Schools’ concept, where the PE lessons are augmented by other school-based contexts within a whole school programme of health enhancing physical activity for children. Finally, we step back to the global and international context and the current Pandemic. Eric Burhaein, Nevzt Demirci, Carla Cristina Vieira Lourenco, Zsolt Nemeth and Diajeng Tyas Pinru Phytanza have collaborated as a concerned group of physical educators to provide an important international position statement which addresses the role which structured and systematic physical activity should assume in the current crisis. This edition then concludes with two brief contributions. The first is an opinion piece by Peter Horton which provides a professional and scholarly reaction to the recent attempt by a group of European football club owners to challenge the global football community and establish a self-governing and exclusive European Super League. It is an event that has created great alarm and consternation in the world of football. Horton reflects the outrage expressed by that community and concludes: While recognising the benefits accruing from well managed professionalism, the essential conflict between the values of sport and the values of market capitalism will continue to simmer below the surface wherever sport is commodified rather than practised for more ‘intrinsic’ reasons. We conclude however on a more celebratory note. We are pleased to acknowledge the recognition achieved by one of the members of our International Review Board. The career and achievements of Professor John Wang – a local ‘scholar’- have been recognised in his being appointed as the foundation E.W. Barker Professor in Physical Education and Sport at the Nanyang Technological University. This is a well-deserved honour and one that reflects the growing stature of the Singapore Physical Education and Sports Science community within the world of International Sport Studies. John Saunders Brisbane, June 2021

IntroductionAustralians who are Not in Employment, Education or Training (NEET) and receive income support span a wide spectrum of working ages. Australian research has concentrated on NEETs aged 15--29 years, in line with international standards. This paper investigates extending the NEET concept to include all working age persons 15--64 years and the value added to welfare policy through analysis of a new linked dataset. MethodsAn observational study design was implemented with individuals aged 15-64 years recorded as receiving Department of Social Services (DSS) income support payments from September 2011 being linked with Australian Bureau of Statistics (ABS) Census data from August 2011 to create a linked dataset for analysis. Descriptive analyses were undertaken of NEET status by Census socio-demographic characteristics, and we modelled the adjusted likelihood of NEET status by Census demographics. ResultsSome 1.37 million or 45.2% of linked DSS payment recipients qualified as NEET. Of NEETs, more than twice as many were female, nearly half were aged 45--64 years, and under 1-in-5 were aged 15--29 years. Multivariate analyses showed that NEETs were more likely to be older, have low educational attainment, have a disability, and to be Indigenous. ConclusionsYoung NEETs aged 15--29 years represented less than 20% of linked DSS payment recipients classified as NEET, suggesting that standard NEETs reporting neglects information on around 80% of the working age NEET population in Australia. Combined with other demographic insights, these results have implications for welfare policy, and indicate a wider range of demographics should be considered under the NEET classification. This may also have implications for Organisation for Economic Co-operation and Development (OECD) reporting.

Background with rationaleAustralians who are Not in Employment, Education or Training (NEET) and receive income support span a wide spectrum of working ages. Australian research has concentrated on NEETs aged 15–29 years, in line with international standards. This paper investigates extending the NEET concept to include all working age persons 15–64 years and the value added to welfare policy through analysis of a new linked dataset. Main AimTo determine whether the NEET concept is policy relevant when applied to all working ages. Methods/ApproachIndividuals aged 15-64 years recorded as receiving Department of Social Services (DSS) income support payments from September 2011 were linked with Australian Bureau of Statistics (ABS) Census data from August 2011 to create a linked dataset for analysis. Descriptive analyses were undertaken of NEET status by Census socio-demographic characteristics, and we modelled the adjusted likelihood of NEET status by Census demographics. ResultsSome 1.37 million or 45.2% of linked DSS payment recipients qualified as NEET. Of NEETs, more than twice as many were female, nearly half were aged 45–64 years, and under 1-in-5 were aged 15–29 years. Multivariate analyses showed that NEETs were more likely to be older, have low educational attainment, have a disability, and to be Indigenous. ConclusionYoung NEETs aged 15–29 years represented less than 20 per cent of linked DSS payment recipients classified as NEET, suggesting that standard NEETs reporting neglects information on around 80 per cent of the working age NEET population in Australia. Combined with other demographic insights, these results have implications for welfare policy, and indicate a wider range of demographics should be considered under the NEET classification. This may also have implications for OECD reporting.

Abstract Background Opportunities for paid employment provide meaningful ways for those with disabilities to participate in society and achieve financial independence. Although the onset age of disabilities can alter individuals’ attitudes toward accepting their disabilities and their desire for work, the lack of data limits relevant empirical research. The purpose of this study is to examine the effect of the onset age on employment, job security (permanent vs. temporary), and wage level among visually impaired adults in South Korea. Methods We used three years of the National Survey on Persons with Disabilities data, 2011, 2014, and 2017, and included 583 participants in this study. We used a logistic regression model for the employment status and a multinomial logistic regression model for job security. We analyzed log monthly wage by a multivariate linear regression model, which subdivided the age groups, with 20–49 years old denoting prime-aged (n = 245) and 50–64 years old denoting late-middle-aged (n = 338). For each age group, we conducted a sub-analysis by sex. Results For prime-aged adults, the employment probability decreased as the age of visual impartment onset increased, and women in particular experienced a lower employment rate for both permanent and temporary jobs when their disability onset age was above 25. However, among permanent employees, monthly wages were higher if the onset age was 25 + compared to when the onset age was 0–5 years old. In late middle-aged adults, adult onset disabilities were associated with higher odds of employment and higher wages for temporary jobs, implying these individuals worked unskilled or manual jobs. Conclusions In prime-aged adults, higher monthly wages among permanent employees showed that they were more likely to continue their original work, whereas in late-middle-aged adults, adult-onset disabilities were associated with a higher employment rate and higher wages for temporary jobs, suggesting the need for further investigation into job quality. These findings indicate a need for differentiated policy approaches considering the onset age of visual impairment to improve labor market outcomes throughout individuals’ lifespans.

In this paper, we examine how parental caregiving affects women’s employment in Japan. Drawing on the 2005–2014 Longitudinal Survey of Middle-Aged and Elderly Persons, we estimate logistic regression models for the employment status of middle-aged women in various types of employment as a function of caregiving intensity to examine when and in what context caregivers’ employment may be at risk for Japanese women. The results showed that working women who began providing 5 or more hours of care per week were significantly more likely to leave their jobs than non-caregiving women; those who began providing fewer than 5 hours of care per week did not show this likelihood. Among women in regular employment, those who began to provide 5 or more hours of care per week and those who provided care in the previous year were more likely to stop working or change jobs than their non-caregiving counterparts.

Abstract Background The first aim of this study was to describe the prevalence of chronic diseases and multimorbidity among employed and unemployed persons. The second aim was to investigate associations of sociodemographic characteristics with the prevalence of chronic diseases and multimorbidity. Methods Data linkage of large-scale registries on employment status, medication use and sociodemographic characteristics for all Dutch residents in 2016 was applied. In total, 5,074,227 subjects aged 18-65 years were included in the study. The prevalence of six common chronic diseases and multimorbidity was investigated among unemployed and employed persons. Multivariate logistic regression analyses were performed to examine associations of sociodemographic characteristics with the prevalence of chronic diseases and multimorbidity. Results Unemployed persons had a higher prevalence of psychological disorders (18.3% vs 5.4%), cardiovascular disease (20.1% vs 8.9%), inflammatory diseases (24.5% vs 15.8%), and respiratory illness (11.7% vs 6.5%) compared to employed persons. Unemployed persons were more likely to have one (OR 1.30, 95% CI 1.29-1.31), two (OR 1.74, 95% CI 1.73-1.76) and at least three chronic diseases (OR 2.59, 95% CI 2.56-2.61) than employed persons. Older persons, women, lower educated persons and migrants were more likely to have one, two, and at least three chronic diseases. Especially at younger ages, psychological disorders and inflammatory conditions were more prevalent but declined from middle age onwards among unemployed persons, whereas as slight increase from middle age onwards was observed among employed persons. Conclusions Using objective data, this study provided evidence for inequalities in the prevalence of chronic diseases and multimorbidity, indicating employment status to be an important determinant of health. Policy measures and health interventions should target chronic diseases and multimorbidity, especially among unemployed persons. Key messages Using objective data, this study showed that unemployed persons had a higher prevalence of chronic diseases and multimorbidity compared to employed persons. In particular older persons, women, lower educated persons and migrants were more likely to have chronic diseases and multimorbidity.

Abstract Background With the increase of overall life expectancy in Japan, effective and beneficial lifestyle approaches and practices are crucial for individuals to have a long, productive and healthy life. Although previous studies suggest that exercise or sports, especially when performed with others, from midlife level have a positive impact on enhancing healthy life expectancy, there is paucity of information regarding these contexts and possible associations. The present study intends to clarify the relationship between engagement in exercise or sports among middle-aged persons and healthy life expectancy through an ecological study in all prefectures in Japan. Methods We tabulated (1) the ratios of middle-aged individuals engaged in exercise or sports and (2) the different methods by which they are engaged in exercise or sports for each prefecture by using data from the 2005–2010 Longitudinal Survey of Middle-aged and Elderly Persons by the Ministry of Health, Labour and Welfare of Japan. Weighted multiple linear regression analyses were performed by sex, using healthy life expectancy in 2010 of each prefecture calculated by Hashimoto (2013) as a criterion variable; indices of (1) and (2) of each year as explanatory variables; and age, living conditions, employment, and chronic diseases as adjusted variables. Results For middle-aged males, the ratio of those engaged in exercise or sports in each year from 2005 to 2010 was positively correlated with healthy life expectancy; this relationship was found in the ratio of middle-aged engaging in exercise or sports “with families or friends”. For females, such a relationship could only be found in the ratio of middle-aged females engaged in exercise or sports in 2008, and those engaging in exercise or sports “with families or friends” in 2006, 2008 and 2010. Conclusion Prefectures with a higher ratio of middle-aged individuals engaging in exercise or sports, especially when done with families or friends, have longer healthy life expectancies. This was particularly evident for males. Thus, exercise or sports with families or friends in midlife seems to be more effective in promoting healthy life expectancy for males than females in Japan.

The present study investigated the influence of disability types and socio-demographic status of people living with disabilities on employment opportunities. The study also examined how the career aspirations of people living with disabilities could impact the relationship between the variables in our first objectives. A descriptive survey was used to elicit data from 600 people living with disabilities in six Nigerian states. A logistic regression analysis revealed that having the communicative-vision type of disability, having no educational qualification, being a woman, not belonging to the privileged ethnic group, being middle-aged and having only numeracy skill without oral communication and literacy skills all affected negatively the chances of employment among people living with disabilities. Except for ethnic groups, career aspirations mediated the influence of disability types, gender, age, education and basic skills on employment opportunities. The implications of the findings were thereafter discussed.

Purpose: To present the prevalence of 3 broad categories of mental disorder (anxiety-related, affective and other disorders) by socioeconomic status and examine the associated socioeconomic risk factors of mental disorders in Australia. Design: A population-based, cross-sectional national health survey on mental health and its risk factors across Australia. Setting: National Health Survey (NHS), 2017-2018 conducted by the Australian Bureau of Statistics (ABS) Participants: Under aged: 4,945 persons, Adult: 16,370 persons and total: 21,315 persons Measures: Patient-reported mental disorder outcomes Analysis: Weighted prevalence rates by socioeconomic status (equivalised household income, education qualifications, Socio-Economic Index for Areas (SEIFA) scores, labor force status and industry sector where the adult respondent had their main job) were estimated using cross-tabulation. Logistic regression utilizing subsamples of underage and adult age groups were analyzed to test the association between socioeconomic status and mental disorders. Results: Anxiety-related disorders were the most common type of disorders with a weighted prevalence rate of 20.04% (95% CI: 18.49-21.69) for the poorest, 13.85% (95% CI: 12.48-15.35) for the richest and 16.34% (95% CI: 15.7-17) overall. The weighted prevalence rate for mood/affective disorders were 20.19% (95% CI: 18.63-21.84) for the poorest, 9.96% (95% CI: 8.79-11.27) for the richest, and 13.57% (95% CI: 12.99-14.17) overall. Other mental disorders prevalence were for the poorest: 9.07% (95% CI: 7.91-10.39), the richest: 3.83% (95% CI: 3.14-4.66), and overall: 5.93% (95% CI: 5.53-6.36). These patterns are also reflected if all mental disorders were aggregated with the poorest: 30.97% (95% CI: 29.15-32.86), the richest: 19.59% (95% CI: 18.02-21.26), and overall: 23.93% (95% CI: 23.19-24.69). The underage logistic regression model showed significant lower odds for the middle (AOR: 0.75, 95% CI: 0.53 -1.04, p < 0.1), rich (AOR: 0.71, 95% CI: 0.5-0.99, p < 0.05) and richest (AOR: 0.6, 95% CI: 0.41-0.89, p < 0.01) income groups. Similarly, in the adult logistic model, there were significant lower odds for middle (AOR: 0.84, 95% CI: 0.72-0.98, p < 0.05), rich (AOR: 0.73, 95% CI: 0.62-0.86, p < 0.01) and richest (AOR: 0.76, 95% CI: 0.63-0.91, p < 0.01) income groups. Conclusion: The prevalence of mental disorders in Australia varied significantly across socioeconomic groups. Knowledge of different mental health needs in different socioeconomic groups can assist in framing evidence-based health promotion and improve the targeting of health resource allocation strategies.

Abstract A prominent demographic trend throughout the industrialized world is population aging. Concerns about economic growth and labour force shortages have led many European nations to enact policies aimed at prolonging working life. Understanding how paid work among late-middle-aged and senior adults is associated with health is therefore important. Using a sample of persons who were 50–75 years of age in 2015 from waves six (2015) and seven (2017) of the Survey of Health, Ageing and Retirement in Europe (n = 38,884), this study shows how a comprehensive set of six workforce involvement/transitions patterns are associated with health. The results show benefits of paid work, especially among respondents having financial difficulties. There is further heterogeneity by gender. The more fragmented employment histories of 50–75-year-old women are associated with stable paid work being of less benefit for addressing financial difficulties and with their health being especially vulnerable to unemployment while they are undergoing financial troubles.

Disability has received limited attention on the global data and social policy scene. There are few global data portals or indices tracking the socioeconomic situation of persons with disabilities. Global social policy initiatives tend to focus on disability benefits, while other social policies may impact the situation of persons with disabilities. The absence of internationally comparable data and tools to measure disability could explain this lack of attention until recently. Given progress with respect to measuring disability, this article set out to find out if human development indicators can be disaggregated by disability status using census and mainstream survey data and, if they can, consider what such disaggregation reveals regarding the socioeconomic situation of persons with disabilities and derive implications for social policies. Disability status is measured through self-reports of functional difficulties (e.g. seeing, hearing). For 19 low- and middle-income countries, the median prevalence stands at 13% among adults aged 15 years and older, and at 28% among households. We could disaggregate a range of human development indicators across disability status for all countries. There are consistent inequalities associated with disability, particularly in terms of educational attainment, employment population ratio, multidimensional poverty, and food security. At the same time, we find that not all persons with functional difficulties experience deprivations. Results in this article on the prevalence of functional difficulties and their association with socioeconomic deprivations show that disability should be central to social policies globally. More data collection, research, and policy work are needed to curb the inequalities associated with disability.

Background: Secondhand smoke exposure among adults is an established risk factor for cardiovascular disease, but little is known about the impact of passive smoking in childhood on risk of adverse cardiovascular outcome in adulthood. We examined whether childhood exposure to secondhand smoke is associated with mortality from coronary heart disease(CHD) in adulthood among Japanese men and women. Methods: We analyzed the data for 71,459 participants ( 31,027 men and 40,432 women) aged 40-79 years, with no history of CHD, stroke, or cancer at the baseline (1988-1990) and who completed a lifestyle questionnaire including the number of family members who smoked at home in childhood(0,1,2 and 3+ members) under the Japan Collaborative Cohort Study for Evaluation of Cancer Risk (JACC Study). Results: The sex-specific proportions of current smokers were 49.0% for 0 member, 54.3% for 1 member, 56.8% for 2 members and 59.3% for 3+members among men, and the respective proportions among women were 3.3%, 5.2%, 7.2%, and 11.2%.During the median follow-up of 18.9 years, a total of 955 (589 men and 366 women) deaths from CHD were reported. There was a dose-response relationship between the number of smoking family members at home and CHD mortality at adulthood among the middle aged (40-59 years); the multivariable HRs, adjusting for age, sex, history of hypertension and diabetes, body mass index, smoking status, alcohol consumption, hours of exercise and walking, perceived mental stress, educational level and employment status, were 1.05 (95% CI: 0.74, 1.48) for 1 family member, 1.27(0.83, 1.94) for 2 family members and 2.34(1.17, 4.68) for 3+ family members compared with no family member(p for trend=0.04). Such an association was not observed for the older persons aged 60-79 years.The excess CHD mortality associated with 3+ family members among the middle-aged was more evident among never or ex-smokers than among current smokers: the respective multivariable HRs were 3.74(1.40, 10.01) and 1.90(0.72, 5.06). Conclusions: Passive smoking exposure in childhood was associated with increased risk of mortality from CHD in adulthood, primarily for the middle aged men and non-current smokers.

Objective:Since the last epidemiological review of NMO/NMOSD, 22 additional studies have been conducted. We systematically review the worldwide prevalence, incidence and basic demographic characteristics of NMOSD, and provide a critical overview of studies.Methods:PubMed, Ovid Medline and EMBASE using Medical Subject Headings and keyword search terms and reference lists of retrieved articles were searched from 1999 until August 2019. We collected data on the country; region; methods of case assessment and aquaporin-4 antibody (AQP4-Ab) test; study period; limitations; incidence (per 100,000 person-years); prevalence (per 100,000 persons); age-, sex-, and ethnic group-specific incidence or prevalence.Results:We identified 33 relevant articles. The results indicated the highest estimates of incidence and prevalence of NMOSD in Afro-Caribbean region [0.73/100 000 person-years (95% CI: 0.45-1.01) and 10/100 000 persons (95% CI: 6.8-13.2)]. The lowest incidence and prevalence of NMOSD were found in Australia and New Zealand [0.037/100 000 person-years (95% CI: 0.036-0.038) and 0.7/100 000 persons (95% CI: 0.66-0.74)]. There was prominent female predominance in adults and the AQP4-Ab seropositive subpopulation. Incidence and prevalence peaked in middle-aged adults. African ethnicity had the highest incidence and prevalence of NMOSD, whereas white Caucasian ethnicity had the lowest. No remarkable trend of incidence was described over time.Conclusion:NMOSD is a rare disease worldwide. Variations in prevalence and incidence have been described among different geographic areas and ethnicities. These are only partially explained by different study methods and NMO/NMOSD definitions, highlighting the need for specifically designed epidemiological studies to identify genetic effects and etiological factors.

Depression and anxiety commonly occur after nonfatal cardiovascular events. It is imperative to learn the extent of depression and anxiety among middle-aged and elder adults with cardiovascular disease at the population level. The Behavioral Risk Factor Surveillance System (BRFSS) is an ongoing, state-based, telephone survey of non-institutionalized adults. In 2006, an Anxiety and Depression Module (ADM) was administered in 38 States, Puerto Rico, the US Virgin Islands, and the District of Columbia. Eight ADM questions were adapted from the validated Patient Health Questionnaire 8. A standardized summary depression severity score from the eight questions was dichotomized as ≥10 or <10. A score ≥10 has been shown to have an 88% sensitivity and specificity for major depression. Two questions assessed lifetime diagnosis of depressive and anxiety disorders. Cardiovascular disease (CVD) was assessed using three questions on coronary heart disease (including angina and myocardial infarction) and stroke. The analysis was performed using SUDAAN 9.0 to account for the complex sampling design of BRFSS. Adjusted prevalence ratio (APR) was obtained by the LOGLINK procedure after adjustment for age, sex, race/ethnicity, education level, marital status and employment status. Results showed among persons aged 45 years and older (n=129,499), the prevalence of a CVD history was 15.3% (95% CI=14.9%-15.7%). The prevalence of CHD and stroke was 12.4% (95% CI=12.0%-12.7%) and 5.0% (95% CI=4.8%-5.2%), respectively. The prevalence of a current depression severity score ≥10 was 7.7% (95% CI=7.3%-8.0%). The prevalence of a lifetime diagnosis of depressive and anxiety disorders was 16.2% (95% CI=15.8%-16.6%) and 11.0% (95% CI=10.6%-11.3%) respectively. Persons with a CVD history were more likely to have a depression severity score ≥10 (15.8% vs. 7.1%, APR [95% CI] = 1.69 [1.54 –1.85]) or have a lifetime diagnosis of depressive (22.3% versus 15.1%, APR [95% CI] = 1.56 [1.45–1.67]) or anxiety disorders (16.6% versus 10.0%, APR [95% CI] = 1.46 [1.37–1.54]). The findings underscore the importance of assessing mental health status in chronic care and management of cardiovascular disease.

The COVID-19 outbreak has led to the implementation of strict restrictions in Australia, which have severely impacted sporting activities. Tennis is played by 6.2% of the population within the Oceania region, and is a valuable sport for maintaining social, mental, and physical health. Current literature indicates the COVID-19 pandemic has negatively affected the mental health of Australian residents. The aim of this study was to investigate changes in training and match play due to the outbreak, and its effects on emotional well-being of Australian senior tennis players. Additionally, explore any differences between middle aged (41–60 years) and senior (61 years and over) Australian tennis players. An online survey was used to assess training and match play habits, as well as ascertain the emotional well-being of tennis players. The survey was active from 24th April 2020 until 6th June 2020. Participants were adult (41+ years) tennis players from Australia. Wilcoxon signed rank tests were performed to check for differences in training hours and tennis matches played. Mann–WhitneyUtests were used to assess the difference in Brief Emotional Experience Scale (BEES) scores, employment status as well as the training hours and tennis matches played between the two age groups. A Kendall's Tau B correlation test was performed to assess the associations of training, match play and demographic characteristics with BEES scores. Kruskal–Wallis tests assessed differences in BEES scores between participants of differing match play formats, tennis experience and cessation of tennis training time periods. There were 245 respondents who met our inclusion criteria. Tennis training hours along with the tennis matches played significantly decreased during COVID-19 compared to pre-COVID-19, 85.09 and 88.48%, respectively. No significant (p&gt; 0.05) differences were observed between age groups for any of the training modality hours, nor was there any significant difference in number of tennis matches played. The participants average BEES score was 0.99 ± 1.27, indicating that respondents had a positive emotional well-being during the COVID-19 pandemic. The emotional well-being of the senior group was significantly (P= 0.002) higher than the middle aged group. Together, our results show that training and tennis match play decreased during the COVID-19 pandemic, however the emotional well-being of senior tennis players in Australia appeared to not be negatively affected.

The present study was conducted during the year 2018-19 in the Srinagar and Ganderbal district of Kashmir valley (J & K). The study was aimed to access the collection, consumption and economic contribution of Ocimum basilicum to household income and employment. The study was conducted using a well-structured questionnaire covering various aspects of the study. The total average yield/annum/family of Ocimum basilicum was recorded 3 kg. The average consumption/annum and sale/annum was 0.5 kg and 2.5 kg respectively. The household characteristics influencing the Ocimum basilicum livelihood in the locality averaged for the sample population indicated the preponderance of middle aged persons (55.9), low literate people (2.1) having large sized families (1.76), marginal sized landholdings (1.28), owning 6-10 livestock (1.76) were engaged mainly in agriculture (2.95) with family labour of mostly 3 members (2.45) and earning gross annual income of ₹60704.26 The total average gross income generated within the sample households was ₹450.00 with the total average net income generation of ₹379.48 and the total average employment of 11.21 man-days by a single household. The structure of household average gross annual income, consisting of all off-farm and on-farm sources among the surveyed population, was ₹60704.26 which was differentiated as horticulture (37.70%) followed by agriculture (26.13%), livestock (21.93%), service (11.31%), business (1.65), basil based cottage industry (0.74%), wage labour (0.41%) and others (0.13%). The livelihood security from Ocimum basilicum L. depends on multitude of various socio-economic factors and cultivation practices and knowledge. The extensive cultivation of this plant may have more positive impact on the livelihood of the local communities.

Abstract Background Prior studies suggest that people with foreign background (PFB) often face problems in access to health care, although access to care may vary between the different PFB groups. This study explores 1) the potential differences in perceived access to care between different PFB groups and the general population, and 2) if marital status, education, employment, self-perceived health, long-term illness, length of stay, age moved to Finland or language skills are associated with access to care among PFB. Methods The data were gathered from the cross-sectional survey on well-being among the PFB (FinMONIK), conducted in Finland 2018. Its random sample consisted of 12 877 persons, aged 18-64 years and the response rate was 53%. Three items were used to assess perceived access to care: I was able to contact the place of care smoothly, I was able to make an appointment without undue delay and I was examined without undue delay (e.g. laboratory tests, X-ray, ultrasound). Logistic regression was used to test which factors were associated with accesses to care, adjusted for age, sex and region. Results After controlling for age, sex and region, the results showed significant differences in access to care among different migrant groups and the general population (p &lt; 0.001). Of those of Estonian background 37% felt that access to care was smooth while only 17% of those coming from Middle-East, and 26% of the general population. Employed persons, persons who had good self-perceived health, and people with no long-term illness, and those who had lived in Finland less than five years, had better access to health care. Marital status, education, language skills and age moved to Finland, were not associated with access to care. Conclusions Large inequities in access to care were identified among people with foreign background. Access to services seems to be better for employed persons and those who have good self-perceived health. Key messages Special attention should be given to improve access to care among non-employed migrants. Migrants should not be considered as a uniform group when planning services.

Stand-up is a global phenomenon. It is Australia’s most significant form of advocatorial theatre and a major platform for challenging stigma and prejudice. In the twenty-first century, Australian stand-up is transforming into a more culturally diverse form and extending the spectrum of material addressing human rights. Since the 1980s Australian stand-up routines have moved beyond the old colonial targets of England and America, and Indigenous comics such as Kevin Kopinyeri, Andy Saunders, and Shiralee Hood have gained an established following. Additionally, the turn to Asia is evident not just in trade agreements and the higher education market but also in cultural exchange and in the billing of emerging Asian stand-ups at mainstream events. The major cultural driver for stand-up is the Melbourne International Comedy Festival (MICF), Australia’s largest cultural event, now over 30 years old, and an important site for dissecting constructs of democracy and nationhood. As John McCallum has observed, popular humour in post-World War II Australia drew on widespread feelings of “displacement, migration and otherness—resonant topics in a country of transplanted people and a dispossessed indigenous population arguing over a distinct Australian identity” (205–06). This essay considers the traditional comic strategies of first and second generation immigrant stand-ups in Australia and compares them with the new wave of post 9/11 Asian-Australian and Middle-Eastern-Australian stand-ups whose personas and interrogations are shifting the paradigm. Self-identifying Muslim stand-ups challenge myths of dominant Australian identity in ways which many still find confronting. Furthermore, the theories of incongruity, superiority, and psychological release re-rehearsed in traditional humour studies, by figures such as Palmer (1994) and Morreall (2009), are predicated on models of humour which do not always serve live performance, especially stand-up with its relational dependence on audience interaction.Stand-ups who immigrated to Australia as children or whose parents immigrated and struggled against adversity are important symbols both of the Australian comedy industry and of a national self-understanding of migrant resilience and making good. Szubanski and Berger hail from earlier waves of European migrants in the 1950s and 1960s. Szubanski has written eloquently of her complex Irish-Polish heritage and documented how the “hand-me-down trinkets of family and trauma” and “the culture clash of competing responses to calamity” have been integral to the development of her comic success and the making of her Aussie characters (347). Rachel Berger, the child of Polish holocaust survivors, advertises and connects both identities on her LinkedIn page: “After 23 years as a stand-up comedian, growing up with Jewish guilt and refugee parents, Rachel Berger knows more about survival than any idiot attending tribal council on reality TV.”Anh Do, among Australia’s most famous immigrant stand-ups, identifies as one of the Vietnamese “boat people” and arrived as a toddler in 1976. Do’s tale of his family’s survival against the odds and his creation of a persona which constructs the grateful, happy immigrant clown is the staple of his very successful routine and increasingly problematic. It is a testament to the power of Do’s stand-up that many did not perceive the toll of the loss of his birth country; the grinding poverty; and the pain of his father’s alcoholism, violence, and survivor guilt until the publication of Do’s ironically titled memoir The Happiest Refugee. In fact, the memoir draws on many of the trauma narratives that are still part of his set. One of Do’s most legendary routines is the story of his family’s sea journey to Australia, told here on ABC1’s Talking Heads:There were forty of us on a nine metre fishing boat. On day four of the journey we spot another boat. As the boat gets closer we realise it’s a boatload of Thai pirates. Seven men with knives, machetes and guns get on our boat and they take everything. One of the pirates picks up the smallest child, he lifts up the baby and rips open the baby’s nappy and dollars fall out. And the pirate decides to spare the kid’s life. And that’s a good thing cos that’s my little brother Khoa Do who in 2005 became Young Australian of the Year. And we were saved on the fifth day by a big German merchant ship which took us to a refugee camp in Malaysia and we were there for around three months before Australia says, come to Australia. And we’re very glad that happened. So often we heard Mum and Dad say—what a great country. How good is this place? And the other thing—kids, as you grow up, do as much as you can to give back to this great country and to give back to others less fortunate.Do’s strategy is apparently one of genuflection and gratitude, an adoption of what McCallum refers to as an Australian post-war tradition of the comedy of inadequacy and embarrassment (210–14). Journalists certainly like to bill Do as the happy clown, framing articles about him with headlines like Rosemary Neill’s “Laughing through Adversity.” In fact, Do is direct about his gallows humour and his propensity to darkness: his humour, he says, is a means of countering racism, of “being able to win people over who might have been averse to being friends with an Asian bloke,” but Neill does not linger on this, nor on the revelation that Do felt stigmatised by his refugee origins and terrified and shamed by the crippling poverty of his childhood in Australia. In The Happiest Refugee, Do reveals that, for him, the credibility of his routines with predominantly white Australian audiences lies in the crafting of himself as an “Aussie comedian up there talking about his working-class childhood” (182). This is not the official narrative that is retold even if it is how Do has endeared himself to Australians, and ridding himself of the happy refugee label may yet prove difficult. Suren Jayemanne is well known for his subtle mockery of multiculturalist rhetoric. In his 2016 MICF show, Wu-Tang Clan Name Generator, Jayemanne played on the supposed contradiction of his Sri Lankan-Malaysian heritage against his teenage years in the wealthy suburb of Malvern in Melbourne, his private schooling, and his obsession with hip hop and black American culture. Jayemanne’s strategy is to gently confound his audiences, leading them slowly up a blind alley. He builds up a picture of how to identify Sri Lankan parents, supposedly Sri Lankan qualities such as an exceptional ability at maths, and Sri Lankan employment ambitions which he argues he fulfilled in becoming an accountant. He then undercuts his story by saying he has recently realised that his suburban background, his numerical abilities, his love of black music, and his rejection of accountancy in favour of comedy, in fact prove conclusively that he has, all along, been white. He also confesses that this is a bruising disappointment. Jayemanne exposes the emptiness of the conceits of white, brown, and black and of invented identity markers and plays on his audiences’ preconceptions through an old storyteller’s device, the shaggy dog story. The different constituencies in his audiences enjoy his trick equally, from quite different perspectives.Diana Nguyen, a second generation Vietnamese stand-up, was both traumatised and politicised by Pauline Hanson when she was a teenager. Hanson described Nguyen’s community in Dandenong as “yellow Asian people” (Filmer). Nguyen’s career as a community development worker combating racism relates directly to her activity as a stand-up: migrant stories are integral to Australian history and Nguyen hypothesises that the “Australian psyche of being invaded or taken over” has reignited over the question of Islamic fundamentalism and expresses her concern to Filmer about the Muslim youths under her care.Nguyen’s alarm about the elision of Islamic radicalism with Muslim culture drives an agenda that has led the new generation of self-identified Muslim stand-ups since 9/11. This post 9/11 world is described by Wajahat as gorged with “exaggerated fear, hatred, and hostility toward Islam and Muslim [. . . ] and perpetuated by negative discrimination and the marginalisation and exclusion of Muslims from social, political, and civic life in western societies.” In Australia, Aamer Rahman, Muhamed Elleissi, Khaled Khalafalla, and Nazeem Hussain typify this newer, more assertive form of second generation immigrant stand-up—they identify as Muslim (whether religious or not), as brown, and as Australian. They might be said to symbolise a logical response to Ghassan Hage’s famous White Nation (1998), which argues that a white supremacism underlies the mindset of the white elite in Australia. Their positioning is more nuanced than previous generations of stand-up. Nazeem Hussain’s routines mark a transformation in Australian stand-up, as Waleed Aly has argued: “ethnic comedy” has hitherto been about the parading of stereotypes for comfortable, mainstream consumption, about “minstrel characters” [. . .] but Hussain interrogates his audiences in every direction—and aggravates Muslims too. Hussain’s is the world of post 9/11 Australian Muslims. It’s about more than ethnic stereotyping. It’s about being a consistent target of political opportunism, where everyone from the Prime Minister to the Foreign Minister to an otherwise washed-up backbencher with a view on burqas has you in their sights, where bombs detonate in Western capitals and unrelated nations are invaded.Understandably, a prevalent theme among the new wave of Muslim comics, and not just in Australia, is the focus on the reading of Muslims as manifestly linked with Islamic State (IS). Jokes about mistaken identity, plane crashes, suicide bombing, and the Koran feature prominently. English-Pakistani Muslim, Shazia Mirza, gained comedy notoriety in the UK in the wake of 9/11 by introducing her routine with the words: “My name’s Shazia Mirza. At least that’s what it says on my pilot’s licence” (Bedell). Stand-ups Negin Farsad, Ahmed Ahmed, and Dean Obeidalla are all also activists challenging prevailing myths about Islam, skin colour and terrorism in America. Egyptian-American Ahmed Ahmed acquired prominence for telling audiences in the infamous Axis of Evil Comedy Tour about how his life had changed much for the worse since 9/11. Ahmed Ahmed was the alias used by one of Osama Bin Laden’s devotees and his life became on ongoing struggle with anti-terrorism officials doing security checks (he was once incarcerated) and with the FBI who were certain that the comedian was among their most wanted terrorists. Similarly, Obeidalla, an Italian-Palestinian-Muslim, notes in his TEDx talk that “If you have a Muslim name, you are probably immune to identity theft.” His narration of a very sudden experience of becoming an object of persecution and of others’ paranoia is symptomatic of a shared understanding of a post 9/11 world among many Muslim comics: “On September 10th 2001 I went to bed as a white American and I woke up an Arab,” says Obeidalla, still dazed from the seismic shift in his life.Hussain and Khalafalla demonstrate a new sophistication and directness in their stand-up, and tackle their majority white audiences head-on. There is no hint of the apologetic or deferential stance performed by Anh Do. Many of the jokes in their routines target controversial or taboo issues, which up until recently were shunned in Australian political debate, or are absent or misrepresented in mainstream media. An Egyptian-Australian born in Saudi Arabia, Khaled Khalafalla arrived on the comedy scene in 2011, was runner-up in RAW, Australia’s most prestigious open mic competition, and in 2013 won the best of the Melbourne International Comedy Festival for Devious. Khalafalla’s shows focus on racist stereotypes and identity and he uses a range of Middle Eastern and Indian accents to broach IS recruitment, Muslim cousin marriages, and plane crashes. His 2016 MICF show, Jerk, was a confident and abrasive routine exploring relationships, drug use, the extreme racism of Reclaim Australia rallies, controversial visa checks by Border Force’s Operation Fortitude, and Islamophobia. Within the first minute of his routine, he criticises white people in the audience for their woeful refusal to master Middle Eastern names, calling out to the “brown woman” in the audience for support, before lining up a series of jokes about the (mis)pronunciation of his name. Khalafalla derives his power on stage by what Oliver Double calls “uncovering.” Double contends that “one of the most subversive things stand-up can do is to uncover the unmentionable,” subjects which are difficult or impossible to discuss in everyday conversation or the broadcast media (292). For instance, in Jerk Khalafalla discusses the “whole hating halal movement” in Australia as a metaphor for exposing brutal prejudice: Let me break it down for you. Halal is not voodoo. It’s just a blessing that Muslims do for some things, food amongst other things. But, it’s also a magical spell that turns some people into fuckwits when they see it. Sometimes people think it’s a thing that can get stuck to your t-shirt . . . like ‘Oh fuck, I got halal on me’ [Australian accent]. I saw a guy the other day and he was like Fuck halal, it funds terrorism. And I was like, let me show you the true meaning of Islam. I took a lamb chop out of my pocket and threw it in his face. And, he was like Ah, what was that? A lamb chop. Oh, I fucking love lamb chops. And, I say you fool, it’s halal and he burst into flames.In effect, Khalafalla delivers a contemptuous attack on the white members of his audience, but at the same time his joke relies on those same audience members presuming that they are morally and intellectually superior to the individual who is the butt of the joke. Khalafalla’s considerable charm is a help in this tricky send-up. In 2015 the Australian Department of Defence recognised his symbolic power and invited him to join the Afghanistan Task Force to entertain the troops by providing what Doran describes as “home-grown Australian laughs” (7). On stage in Australia, Khalafalla constructs a persona which is an outsider to the dominant majority and challenges the persecution of Muslim communities. Ironically, on the NATO base, Khalafalla’s act was perceived as representing a diverse but united Australia. McCallum has pointed to such contradictions, moments where white Australia has shown itself to be a “culture which at first authenticates emigrant experience and later abrogates it in times of defiant nationalism” (207). Nazeem Hussain, born in Australia to Sri Lankan parents, is even more confrontational. His stand-up is born of his belief that “comedy protects us from the world around us” and is “an evolutionary defence mechanism” (8–9). His ground-breaking comedy career is embedded in his work as an anti-racism activist and asylum seeker supporter and shaped by his second-generation migrant experiences, law studies, community youth work, and early mentorship by American Muslim comic trio Allah Made Me Funny. He is well-known for his pioneering television successes Legally Brown and Salam Café. In his stand-up, Hussain often dwells witheringly on the failings and peculiarities of white people’s attempts to interact with him. Like all his routines, his sell-out show Fear of the Brown Planet, performed with Aamer Rahman from 2004–2008, explored casual, pathologised racism. Hussain deliberately over-uses the term “white people” in his routines as a provocation and deploys a reverse racism against his majority white audiences, knowing that many will be squirming. “White people ask me how can Muslims have fun if they don’t drink? Muslims have fun! Of course we have fun! You’ve seen us on the news.” For Hussain stand-up is “fundamentally an art of protest,” to be used as “a tool by communities and people with ideas that challenge and provoke the status quo with a spirit of counterculture” (Low 1–3). His larger project is to humanise Muslims to white Australians so that “they see us firstly as human beings” (1–3). Hussain’s 2016 MICF show, Hussain in the Membrane, both satirised media hype and hysterical racism and pushed for a better understanding of the complex problems Muslim communities face in Australia. His show also connected issues to older colonial traditions of racism. In a memorable and beautifully crafted tirade, Hussain inveighed against the 2015 Bendigo riots which occurred after local Muslims lodged an application to Bendigo council to build a mosque in the sleepy Victorian town. [YELLING in an exaggerated Australian accent] No we don’t want Muslims! NO we don’t want Muslims—to come invade Bendigo by application to the local council! That is the most bureaucratic invasion of all times. No place in history has been invaded by lodging an application to a local council. Can you see ISIS running around chasing town planners? Of course not, Muslims like to wait 6–8 months to invade! That’s a polite way to invade. What if white people invaded that way? What a better world we’d be living in. If white people invaded Australia that way, we’d be able to celebrate Australia Day on the same day without so much blood on our hands. What if Captain Cook came to Australia and said [in a British accent] Awe we would like to apply to invade this great land and here is our application. [In an Australian accent] Awe sorry, mate, rejected, but we’ll give you Bendigo.As Waleed Aly sees it, the Australian cultural majority is still “unused to hearing minorities speak with such assertiveness.” Hussain exposes “a binary world where there’s whiteness, and then otherness. Where white people are individuals and non-white people (a singular group) are not” (Aly). Hussain certainly speaks as an insider and goes so far as recognising his coloniser’s guilt in relation to indigenous Australians (Tan). Aly well remembers the hate mail he and Hussain received when they worked on Salam Café: “The message was clear. We were outsiders and should behave as such. We were not real Australians. We should know our place, as supplicants, celebrating the nation’s unblemished virtue.” Khalafalla, Rahman, Elleissi, and Hussain make clear that the new wave of comics identify as Muslim and Australian (which they would argue many in the audiences receive as a provocation). They have zero tolerance of racism, their comedy is intimately connected with their political activism, and they have an unapologetically Australian identity. No longer is it a question of whether the white cultural majority in Australia will anoint them as worthy and acceptable citizens, it is a question of whether the audiences can rise to the moral standards of the stand-ups. The power has been switched. For Hussain laughter is about connection: “that person laughs because they appreciate the point and whether or not they accept what was said was valid isn’t important. What matters is, they’ve understood” (Low 5). ReferencesAhmed, Ahmed. “When It Comes to Laughter, We Are All Alike.” TedXDoha (2010). 16 June 2016 <http://tedxtalks.ted.com/video/TEDxDoha-Ahmed-Ahmed-When-it-Co>.Aly, Waleed. “Comment.” Sydney Morning Herald 24 Sep. 2013."Anh Do". Talking Heads with Peter Thompson. ABC1. 4 Oct. 2010. Radio.Bedell, Geraldine. “Veiled Humour.” The Guardian (2003). 8 Aug. 2016 <https://www.theguardian.com/stage/2003/apr/20/comedy.artsfeatures?CMP=Share_iOSApp_Other>.Berger, Rachel. LinkedIn [Profile page]. 14 June 2016 <http://www.linkedin.com/company/rachel-berger>.Do, Anh. The Happiest Refugee. Sydney: Allen and Unwin, 2010. Doran, Mark. "Service with a Smile: Entertainers Give Troops a Taste of Home.” Air Force 57.21 (2015). 12 June 2016 <http://www.defence.gov.au/Publications/NewsPapers/Raaf/editions/5721/5721.pdf>.Double, Oliver. Getting the Joke: The Inner Workings of Stand-Up Comedy. 2nd ed. London: Bloomsbury, 2014.Filmer, Natalie. "For Dandenong Comedian and Actress Diana Nguyen The Colour Yellow has a Strong Meaning.” The Herald Sun 3 Sep. 2013.Hage, Ghassan. White Nation: Fantasies of a White Supremacy in a Multicultural Age. Sydney: Pluto Press, 1998.Hussain, Nazeem. Hussain in the Membrane. Melbourne International Comedy Festival, 2016.———. "The Funny Side of 30.” Spectrum. The Age 12 Mar. 2016.Khalafalla, Khaled. Jerk. Melbourne International Comedy Festival, 2016.Low, Lian. "Fear of a Brown Planet: Fight the Power with Laughter.” Peril: Asian Australian Arts and Culture (2011). 12 June 2016 <http://peril.com.au/back-editions/edition10/fear-of-a-brown-planet-fight-the-power-with-laughter>. McCallum, John. "Cringe and Strut: Comedy and National Identity in Post-War Australia.” Because I Tell a Joke or Two: Comedy, Politics and Social Difference. Ed. Stephen Wagg. New York: Routledge, 1998. Morreall, John. Comic Relief. Oxford: Wiley-Blackwell, 2009.Neill, Rosemary. "Laughing through Adversity.” The Australian 28 Aug. 2010.Obeidalla, Dean. "Using Stand-Up to Counter Islamophobia.” TedXEast (2012). 16 June 2016 <http://tedxtalks.ted.com/video/TEDxEast-Dean-Obeidalla-Using-S;TEDxEast>.Palmer, Jerry. Taking Humour Seriously. London: Routledge, 1994. Szubanski, Magda. Reckoning. Melbourne: Text Publishing, 2015. Tan, Monica. "Aussie, Aussie, Aussie! Allahu Akbar! Nazeem Hussain's Bogan-Muslim Army.” The Guardian 29 Feb. 2016. "Uncle Sam.” Salam Café (2008). 11 June 2016 <https://www.youtube.com/watch?v=SeQPAJt6caU>.Wajahat, Ali, et al. "Fear Inc.: The Roots of the Islamophobia Network in America.” Center for American Progress (2011). 11 June 2016 <https://www.americanprogress.org/issues/religion/report/2011/08/26/10165/fear-inc>.

“Human beings are not born once and for all on the day their mothers give birth to them [...] life obliges them over and over again to give birth to themselves.” (Garcia Marquez 165) Introduction The refugee experience is, at heart, one of rebirth. Just as becoming a new, distinctive being—biological birth—necessarily involves the physical separation of mother and infant, so becoming a refugee entails separation from a "mother country." This mother country may or may not be a recognised nation state; the point is that the refugee transitions from physical connectedness to separation, from insider to outsider, from endemic to alien. Like babies, refugees may have little control over the timing and conditions of their expulsion. Successful resettlement requires not one rebirth but multiple rebirths—resettlement is a lifelong process (Layton)—which in turn require hope, imagination, and energy. In rebirthing themselves over and over again, people who have fled or been forced from their homelands become both mother and child. They do not go through this rebirthing alone. A range of agencies and individuals may be there to assist, including immigration officials, settlement services, schools and teachers, employment agencies and employers, English as a Second Language (ESL) resources and instructors, health-care providers, counsellors, diasporic networks, neighbours, church groups, and other community organisations. The nature, intensity, and duration of these “midwives’” interventions—and when they occur and in what combinations—vary hugely from place to place and from person to person, but there is clear evidence that post-migration experiences have a significant impact on settlement outcomes (Fozdar and Hartley). This paper draws on qualitative research I did in 2012 in a regional town in New South Wales to illuminate some of the ways in which settlement aides ease, or impede, refugees’ rebirth as fully recognised and participating Australians. I begin by considering what it means to be resilient before tracing some of the dimensions of the resettlement process. In doing so, I draw on data from interviews and focus groups with former refugees, service providers, and other residents of the town I shall call Easthaven. First, though, a word about Easthaven. As is the case in many rural and regional parts of Australia, Easthaven’s population is strongly dominated by Anglo Celtic and Saxon ancestries: 2011 Census data show that more than 80 per cent of residents were born in Australia (compared with a national figure of 69.8 per cent) and about 90 per cent speak only English at home (76.8 per cent). Almost twice as many people identify as Aboriginal or Torres Strait Islander as the national figure of 2.5 per cent (Australian Bureau of Statistics). For several years Easthaven has been an official “Refugee Welcome Zone”, welcoming hundreds of refugees from diverse countries in Africa and the Middle East as well as from Myanmar. This reflects the Department of Immigration and Citizenship’s drive to settle a fifth of Australia’s 13,750 humanitarian entrants a year directly in regional areas. In Easthaven’s schools—which is where I focused my research—almost all of the ESL students are from refugee backgrounds. Defining Resilience Much of the research on human resilience is grounded in psychology, with a capacity to “bounce back” from adverse experiences cited in many definitions of resilience (e.g. American Psychological Association). Bouncing back implies a relatively quick process, and a return to a state or form similar to that which existed before the encounter with adversity. Yet resilience often requires sustained effort and significant changes in identity. As Jerome Rugaruza, a former UNHCR refugee, says of his journey from the Democratic Republic of Congo to Australia: All the steps begin in the burning village: you run with nothing to eat, no clothes. You just go. Then you get to the refugee camp […] You have a little bread and you thank god you are safe. Then after a few years in the camp, you think about a future for your children. You arrive in Australia and then you learn a new language, you learn to drive. There are so many steps and not everyone can do it. (Milsom) Not everyone can do it, but a large majority do. Research by Graeme Hugo, for example, shows that although humanitarian settlers in Australia face substantial barriers to employment and initially have much higher unemployment rates than other immigrants, for most nationality groups this difference has disappeared by the second generation: “This is consistent with the sacrifice (or investment) of the first generation and the efforts extended to attain higher levels of education and English proficiency, thereby reducing the barriers over time.” (Hugo 35). Ingrid Poulson writes that “resilience is not just about bouncing. Bouncing […] is only a reaction. Resilience is about rising—you rise above it, you rise to the occasion, you rise to the challenge. Rising is an active choice” (47; my emphasis) I see resilience as involving mental and physical grit, coupled with creativity, aspiration and, crucially, agency. Dimensions of Resettlement To return to the story of 41-year-old Jerome Rugaruza, as related in a recent newspaper article: He [Mr Rugaruza] describes the experience of being a newly arrived refugee as being like that of a newborn baby. “You need special care; you have to learn to speak [English], eat the different food, create relationships, connections”. (Milsom) This is a key dimension of resettlement: the adult becomes like an infant again, shifting from someone who knows how things work and how to get by to someone who is likely to be, for a while, dependent on others for even the most basic things—communication, food, shelter, clothing, and social contact. The “special care” that most refugee arrivals need initially (and sometimes for a long time) often results in their being seen as deficient—in knowledge, skills, dispositions, and capacities as well as material goods (Keddie; Uptin, Wright and Harwood). As Fozdar and Hartley note: “The tendency to use a deficit model in refugee resettlement devalues people and reinforces the view of the mainstream population that refugees are a liability” (27). Yet unlike newborns, humanitarian settlers come to their new countries with rich social networks and extensive histories of experience and learning—resources that are in fact vital to their rebirth. Sisay (all names are pseudonyms), a year 11 student of Ethiopian heritage who was born in Kenya, told me with feeling: I had a life back in Africa [her emphasis]. It was good. Well, I would go back there if there’s no problems, which—is a fact. And I came here for a better life—yeah, I have a better life, there’s good health care, free school, and good environment and all that. But what’s that without friends? A fellow student, Celine, who came to Australia five years ago from Burundi via Uganda, told me in a focus group: Some teachers are really good but I think some other teachers could be a little bit more encouraging and understanding of what we’ve gone through, because [they] just look at you like “You’re year 11 now, you should know this” […] It’s really discouraging when [the teachers say] in front of the class, “Oh, you shouldn’t do this subject because you haven’t done this this this this” […] It’s like they’re on purpose to tell you “you don’t have what it takes; just give up and do something else.” As Uptin, Wright and Harwood note, “schools not only have the power to position who is included in schooling (in culture and pedagogy) but also have the power to determine whether there is room and appreciation for diversity” (126). Both Sisay and Celine were disheartened by the fact they felt some of their teachers, and many of their peers, had little interest in or understanding of their lives before they came to Australia. The teachers’ low expectations of refugee-background students (Keddie, Uptin, Wright and Harwood) contrasted with the students’ and their families’ high expectations of themselves (Brown, Miller and Mitchell; Harris and Marlowe). When I asked Sisay about her post-school ambitions, she said: “I have a good idea of my future […] write a documentary. And I’m working on it.” Celine’s response was: “I know I’m gonna do medicine, be a doctor.” A third girl, Lily, who came to Australia from Myanmar three years ago, told me she wanted to be an accountant and had studied accounting at the local TAFE last year. Joseph, a father of three who resettled from South Sudan seven years ago, stressed how important getting a job was to successful settlement: [But] you have to get a certificate first to get a job. Even the job of cleaning—when I came here I was told that somebody has to go to have training in cleaning, to use the different chemicals to clean the ground and all that. But that is just sweeping and cleaning with water—you don’t need the [higher-level] skills. Simple jobs like this, we are not able to get them. In regional Australia, employment opportunities tend to be limited (Fozdar and Hartley); the unemployment rate in Easthaven is twice the national average. Opportunities to study are also more limited than in urban centres, and would-be students are not always eligible for financial assistance to gain or upgrade qualifications. Even when people do have appropriate qualifications, work experience, and language proficiency, the colour of their skin may still mean they miss out on a job. Tilbury and Colic-Peisker have documented the various ways in which employers deflect responsibility for racial discrimination, including the “common” strategy (658) of arguing that while the employer or organisation is not prejudiced, they have to discriminate because of their clients’ needs or expectations. I heard this strategy deployed in an interview with a local businesswoman, Catriona: We were advertising for a new technician. And one of the African refugees came to us and he’d had a lot of IT experience. And this is awful, but we felt we couldn't give him the job, because we send our technicians into people's houses, and we knew that if a black African guy rocked up at someone’s house to try and fix their computer, they would not always be welcomed in all—look, it would not be something that [Easthaven] was ready for yet. Colic-Peisker and Tilbury (Refugees and Employment) note that while Australia has strict anti-discrimination legislation, this legislation may be of little use to the people who, because of the way they look and sound (skin colour, dress, accent), are most likely to face prejudice and discrimination. The researchers found that perceived discrimination in the labour market affected humanitarian settlers’ sense of satisfaction with their new lives far more than, for example, racist remarks, which were generally shrugged off; the students I interviewed spoke of racism as “expected,” but “quite rare.” Most of the people Colic-Peisker and Tilbury surveyed reported finding Australians “friendly and accepting” (33). Even if there is no active discrimination on the basis of skin colour in employment, education, or housing, or overt racism in social situations, visible difference can still affect a person’s sense of belonging, as Joseph recounts: I think of myself as Australian, but my colour doesn’t [laughs] […] Unfortunately many, many Australians are expecting that Australia is a country of Europeans … There is no need for somebody to ask “Where do you come from?” and “Do you find Australia here safe?” and “Do you enjoy it?” Those kind of questions doesn’t encourage that we are together. This highlights another dimension of resettlement: the journey from feeling “at home” to feeling “foreign” to, eventually, feeling at home again in the host country (Colic-Peisker and Tilbury, Refugees and Employment). In the case of visibly different settlers, however, this last stage may never be completed. Whether the questions asked of Joseph are well intentioned or not, their effect may be the same: they position him as a “forever foreigner” (Park). A further dimension of resettlement—one already touched on—is the degree to which humanitarian settlers actively manage their “rebirth,” and are allowed and encouraged to do so. A key factor will be their mastery of English, and Easthaven’s ESL teachers are thus pivotal in the resettlement process. There is little doubt that many of these teachers have gone to great lengths to help this cohort of students, not only in terms of language acquisition but also social inclusion. However, in some cases what is initially supportive can, with time, begin to undermine refugees’ maturity into independent citizens. Sharon, an ESL teacher at one of the schools, told me how she and her colleagues would give their refugee-background students lifts to social events: But then maybe three years down the track they have a car and their dad can drive, but they still won’t take them […] We arrive to pick them up and they’re not ready, or there’s five fantastic cars in the driveway, and you pick up the student and they say “My dad’s car’s much bigger and better than yours” [laughs]. So there’s an expectation that we’ll do stuff for them, but we’ve created that [my emphasis]. Other support services may have more complex interests in keeping refugee settlers dependent. The more clients an agency has, the more services it provides, and the longer clients stay on its books, the more lucrative the contract for the agency. Thus financial and employment imperatives promote competition rather than collaboration between service providers (Fozdar and Hartley; Sidhu and Taylor) and may encourage assumptions about what sorts of services different individuals and groups want and need. Colic-Peisker and Tilbury (“‘Active’ and ‘Passive’ Resettlement”) have developed a typology of resettlement styles—“achievers,” “consumers,” “endurers,” and “victims”—but stress that a person’s style, while influenced by personality and pre-migration factors, is also shaped by the institutions and individuals they come into contact with: “The structure of settlement and welfare services may produce a victim mentality, leaving members of refugee communities inert and unable to see themselves as agents of change” (76). The prevailing narrative of “the traumatised refugee” is a key aspect of this dynamic (Colic-Peisker and Tilbury, “‘Active’ and ‘Passive’ Resettlement”; Fozdar and Hartley; Keddie). Service providers may make assumptions about what humanitarian settlers have gone through before arriving in Australia, how they have been affected by their experiences, and what must be done to “fix” them. Norah, a long-time caseworker, told me: I think you get some [providers] who go, “How could you have gone through something like that and not suffered? There must be—you must have to talk about this stuff” […] Where some [refugees] just come with the [attitude] “We’re all born into a situation; that was my situation, but I’m here now and now my focus is this.” She cited failure to consider cultural sensitivities around mental illness and to recognise that stress and anxiety during early resettlement are normal (Tilbury) as other problems in the sector: [Newly arrived refugees] go through the “happy to be here” [phase] and now “hang on, I’ve thumped to the bottom and I’m missing my own foods and smells and cultures and experiences”. I think sometimes we’re just too quick to try and slot people into a box. One factor that appears to be vital in fostering and sustaining resilience is social connection. Norah said her clients were “very good on the mobile phone” and had links “everywhere,” including to family and friends in their countries of birth, transition countries, and other parts of Australia. A 2011 report for DIAC, Settlement Outcomes of New Arrivals, found that humanitarian entrants to Australia were significantly more likely to be members of cultural and/or religious groups than other categories of immigrants (Australian Survey Research). I found many examples of efforts to build both bonding and bridging capital (Putnam) in Easthaven, and I offer two examples below. Several people told me about a dinner-dance that had been held a few weeks before one of my visits. The event was organised by an African women’s group, which had been formed—with funding assistance—several years before. The dinner-dance was advertised in the local newspaper and attracted strong interest from a broad cross-section of Easthaveners. To Debbie, a counsellor, the response signified a “real turnaround” in community relations and was a big boon to the women’s sense of belonging. Erica, a teacher, told me about a cultural exchange day she had organised between her bush school—where almost all of the children are Anglo Australian—and ESL students from one of the town schools: At the start of the day, my kids were looking at [the refugee-background students] and they were scared, they were saying to me, "I feel scared." And we shoved them all into this tiny little room […] and they had no choice but to sit practically on top of each other. And by the end of the day, they were hugging each other and braiding their hair and jumping and playing together. Like Uptin, Wright and Harwood, I found that the refugee-background students placed great importance on the social aspects of school. Sisay, the girl I introduced earlier in this paper, said: “It’s just all about friendship and someone to be there for you […] We try to be friends with them [the non-refugee students] sometimes but sometimes it just seems they don’t want it.” Conclusion A 2012 report on refugee settlement services in NSW concludes that the state “is not meeting its responsibility to humanitarian entrants as well as it could” (Audit Office of New South Wales 2); moreover, humanitarian settlers in NSW are doing less well on indicators such as housing and health than humanitarian settlers in other states (3). Evaluating the effectiveness of formal refugee-centred programs was not part of my research and is beyond the scope of this paper. Rather, I have sought to reveal some of the ways in which the attitudes, assumptions, and everyday practices of service providers and members of the broader community impact on refugees' settlement experience. What I heard repeatedly in the interviews I conducted was that it was emotional and practical support (Matthews; Tilbury), and being asked as well as told (about their hopes, needs, desires), that helped Easthaven’s refugee settlers bear themselves into fulfilling new lives. References Audit Office of New South Wales. Settling Humanitarian Entrants in New South Wales—Executive Summary. May 2012. 15 Aug. 2013 ‹http://www.audit.nsw.gov.au/ArticleDocuments/245/02_Humanitarian_Entrants_2012_Executive_Summary.pdf.aspx?Embed=Y>. Australian Bureau of Statistics. 2011 Census QuickStats. Mar. 2013. 11 Aug. 2013 ‹http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/0>. Australian Survey Research. Settlement Outcomes of New Arrivals—Report of Findings. Apr. 2011. 15 Aug. 2013 ‹http://www.immi.gov.au/media/publications/research/_pdf/settlement-outcomes-new-arrivals.pdf>. Brown, Jill, Jenny Miller, and Jane Mitchell. “Interrupted Schooling and the Acquisition of Literacy: Experiences of Sudanese Refugees in Victorian Secondary Schools.” Australian Journal of Language and Literacy 29.2 (2006): 150-62. Colic-Peisker, Val, and Farida Tilbury. “‘Active’ and ‘Passive’ Resettlement: The Influence of Supporting Services and Refugees’ Own Resources on Resettlement Style.” International Migration 41.5 (2004): 61-91. ———. Refugees and Employment: The Effect of Visible Difference on Discrimination—Final Report. Perth: Centre for Social and Community Research, Murdoch University, 2007. Fozdar, Farida, and Lisa Hartley. “Refugee Resettlement in Australia: What We Know and Need To Know.” Refugee Survey Quarterly 4 Jun. 2013. 12 Aug. 2013 ‹http://rsq.oxfordjournals.org/search?fulltext=fozdar&submit=yes&x=0&y=0>. Garcia Marquez, Gabriel. Love in the Time of Cholera. London: Penguin Books, 1989. Harris, Vandra, and Jay Marlowe. “Hard Yards and High Hopes: The Educational Challenges of African Refugee University Students in Australia.” International Journal of Teaching and Learning in Higher Education 23.2 (2011): 186-96. Hugo, Graeme. A Significant Contribution: The Economic, Social and Civic Contributions of First and Second Generation Humanitarian Entrants—Summary of Findings. Canberra: Department of Immigration and Citizenship, 2011. Keddie, Amanda. “Pursuing Justice for Refugee Students: Addressing Issues of Cultural (Mis)recognition.” International Journal of Inclusive Education 16.12 (2012): 1295-1310. Layton, Robyn. "Building Capacity to Ensure the Inclusion of Vulnerable Groups." Creating Our Future conference, Adelaide, 28 Jul. 2012. Milsom, Rosemarie. “From Hard Luck Life to the Lucky Country.” Sydney Morning Herald 20 Jun. 2013. 12 Aug. 2013 ‹http://www.smh.com.au/national/from-hard-luck-life-to-the-lucky-country-20130619-2oixl.html>. Park, Gilbert C. “’Are We Real Americans?’: Cultural Production of Forever Foreigners at a Diversity Event.” Education and Urban Society 43.4 (2011): 451-67. Poulson, Ingrid. Rise. Sydney: Pan Macmillan Australia, 2008. Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. New York: Simon & Schuster, 2000. Sidhu, Ravinder K., and Sandra Taylor. “The Trials and Tribulations of Partnerships in Refugee Settlement Services in Australia.” Journal of Education Policy 24.6 (2009): 655-72. Tilbury, Farida. “‘I Feel I Am a Bird without Wings’: Discourses of Sadness and Loss among East Africans in Western Australia.” Identities: Global Studies in Culture and Power 14.4 (2007): 433-58. ———, and Val Colic-Peisker. “Deflecting Responsibility in Employer Talk about Race Discrimination.” Discourse & Society 17.5 (2006): 651-76. Uptin, Jonnell, Jan Wright, and Valerie Harwood. “It Felt Like I Was a Black Dot on White Paper: Examining Young Former Refugees’ Experience of Entering Australian High Schools.” The Australian Educational Researcher 40.1 (2013): 125-37.

Abstract Background Personalisation is a growing international policy paradigm that aims to create both improved outcomes for individuals, and reduce fiscal pressures on government, by giving greater choice and control to citizens accessing social services. In personalisation schemes, individuals purchase services from a ‘service market’ using individual budgets or vouchers given to them by governments. Personalisation schemes have grown in areas such as disability and aged care across Europe, the UK and Australia. There is a wealth of evidence in public health and health care that demonstrates that practically all forms of social services, programs and interventions produce unequal benefit depending on socio-economic position. Research has found that skills required to successfully negotiate service systems leads to disproportionate benefit to the ‘middle class. With an unprecedented emphasis on individual skills, personalisation has even greater potential to widen and entrench social inequalities. Despite the increase in numbers of people now accessing services through such schemes, there has been no examination of how different social groups benefit from these schemes, how this widens and entrenches social inequities, and – in turn – what can be done to mitigate this. Methods This article presents a meta-review of the evidence on personalisation and inequality. A qualitative meta-analysis was undertaking of existing research into personalisation schemes in social services to identify whether and how such schemes are impacting different socio-economic groups. Results No research was identified which seeks to understand the impact of personalisation schemes on inequality. However, a number of ‘proxies’ for social class were identified, such as education, income, and employment, which had a bearing on outcome. We provide a theoretical framework for understanding why this is occurring, using concepts drawn from Bourdieu. Conclusion Personalisation schemes are likely to be entrenching, and potentially expanding, social inequalities. More attention needs to be given to this aspect of personal budgets by policymakers and researchers.

In the paper the concept of labor migration is considered, its origin, the approaches of various scholars on the issue of international labor migration, its main types, components and fundamental differences are studied. The reasons of the migration of highly qualified employees and its negative consequences have been identified. It has been established that the lion's share of migrants are young and middle-aged people, ie the working population, which be able increase productivity. It is determined that wages are a key factor in labor migration of highly skilled employees. It is established that employment in Ukraine has its own features, which are caused by the modern transformation processes, such as: large-scale informal employment and payment in envelopes without the contributions to the special funds; the low labor costs, which be able cause the first problem. The sex and age structure of migrants from Ukraine are considered, in particular, it should be noted that the sex structure had the variable dynamics throughout the period. At the same time, men are accounted for the largest share, as it was mentally the case that they are the ones who should provide for their families financially. It has been established that the majority of Ukrainians travel to the European countries, and the smallest – to Australia and Oceania. This migration movement is mainly due to the fact that Ukraine has adopted a course of European integration and the existing programs of the European Union's countries. Along with a number of negative aspects that give rise to international labor migration, it is necessary to highlight such positive aspects of the migration of labor resources from the country for the economy, in particular, these are remittances of migrants to their relatives in the country of their former place of residence. Another negative factor of migration processes is the long-term nature and its nature is negative for the socio-economic development of the country, since in the short term remittances are significant, but if this issue is considered in the future, their flow decreases over time, since the vast majority of migrants tend to stay in that country where they went, with the subsequent coming of their family members. The measures for the elimination the negative consequences of migration processes are proposed.

Introduction One in three Australian marriages ends in divorce (ABS, Parental Divorce). While such statistics may be interpreted to mean that marriage is becoming less significant to Australians, many Australians continue to invest heavily in marriage as a constitutive mode of subjectification. Recently released first-wave data from a longitudinal study being conducted with seven thousand high school students in Queensland indicates that the majority of high schoolers expect to get married (Skrbis et al. 76). Significant political attention and debate in Australia has centred on the issue of marriage “equality” in relation to legislating same-sex marriage. Many accounts problematise marriage in Australia today by focussing on the current inequities involved in who can and cannot legally get married, which are important debates to be had in the process of understanding the persistent importance of marriage as a social institution. This paper, however, provides a critical account of “equality” in contemporary heterosexual marriages or heteronormative monogamous relationships. I argue that, far from being a mundane “old” debate, the distribution of unpaid work between spouses has a significant effect on women’s spousal satisfaction, and it calls into question the notion of “marriage equality” in everyday heterosexual marriages whether these are civil or common law relationships. I suggest that the contemporary “Hollywood” fantasy about marriage, which informs the same-sex marriage movement, sets up expectations that belie most people’s lived realities.Project Overview This paper draws on data from a larger research project that explores the impact of globalised ideas about good womanhood and good motherhood on Western Australian women, and how local context shapes these women’s personal ideals about their own life trajectories. Interviews were conducted with a series of women living in regional Western Australia. While more women were interviewed as part of the larger research project, this paper draws on interviews with seven intending-to-mother women and fifteen mothers. Through several open-ended questions, the women were asked about either their plans for motherhood or their experiences of motherhood, in relation to additional expectations of women’s lives, such as participation in the paid sector and body ideals. Married women were also asked about how unpaid labour—that is, domestic and, where relevant, childcare labour—is divided between themselves and their husbands. Women’s responses to these questions provide a critical account of how marriage and the notion of “equality” is currently lived out in Australia. To ensure confidentiality, their real names have been replaced by pseudonyms. My purpose in drawing on my own data in conjunction with literature on the gendered division of unpaid labour is to emphasise that while the theoretical insights are not new, the fact that a gendered disparity continues to exist is of concern because of women’s dissatisfaction with the situation, particularly in the context of frequent claims that equality is already achieved, and given that it queries the fantasy of marriage continuing to circulate in contemporary culture. The women I interviewed responded openly to questions about the division of domestic, and where relevant, childcare labour and the affects of this on their relationships. Feminist approaches to the research process highlight the importance of being reflexive about the relationship(s) between researcher and researched to make the presence of the researcher in the research process explicit (Ramazanoglu and Holland 156). Ramazanoglu and Holland argue “producing knowledge through empirical research is not the same as acting as a conduit for the voices of others” (116). While the power dynamic between researcher and researched is not generally an equal one, the fact that I am younger than all of my participants bar one (who is the same age) I believe went some way towards diffusing my position of power in the interviews. Some of my participants were also either already known to me, or had been referred to me by another participant prior to the interview, which may have made the process of interview less intimidating and more comfortable. Importantly, in many instances, my participants’ reflections about the division of unpaid labour in their marriages, their expectations, hopes for the future, and feelings about it mirrored my own feelings and realities. I related personally to their experiences, and empathise with their dilemmas. This is significant methodologically because “emotional connectedness” (Coffey 158–9) including a close identification with participants (Conle 53–4) influences the process of interpretation. However, in Scott’s terms, power operated through my assessment of participants’ dilemmas being similar to my own and my writing up of their interviews (780). The findings presented in this paper are based on my interpretation of the voices of others, and are unavoidably influenced by my personal context as the researcher. Two predominate themes emerged from women’s accounts of unpaid domestic and childcare labour. Women anticipated their partner’s participation in domestic care activities, although in most cases, this expectation was not met. Further, women held these expectations for “when they had children,” even though their partners did not presently participate in domestic activities. At the same time, the women accepted that, while their husband’s should participate more in unpaid work, this participation would not be equal to their own responsibilities regardless of what other activities either were engaged in outside of the domestic and familial sphere. I found that while women expect a fairer division of domestic labour, they do not expect it to be “50/50.” I argue that the gendered division of labour has changed less than most couples readily admit, as seen through the following overview. Gender Relations: Changes and Stases In Western societies, women’s roles in the public sphere have changed considerably over the last fifty plus years. Women now constitute a significant percentage of the paid workforce. Today, couple families where both partners work in the paid sector are the most common of all families (ABS, Family Functioning). However, there has not been a corresponding shift in the way that unpaid labour is divided between partners. Only one half of the historical gendered division of labour has undergone change; while women as well as men now operate in the paid (and thus valued) sector (traditionally available only to men), women still predominately perform most of the unpaid (and undervalued) domestic work. Gender researchers have been reporting on the unequal division of domestic labour between couples, and the material and emotional consequences for women, for a long time (see Hochschild; DeVault; Coltrane), yet I argue that it remains largely unchanged, and dismissed as an important issue in the Australian community. Hochschild’s work, in particular, made a significant contribution to research into the gendered division of unpaid labour between couples by analysing and reporting on interview data collected from fifty couples, both working full-time in the paid sector, with young children. Hochschild identified and reported on couples justifications for the way they divide domestic and care, which, as I will demonstrate, are still common today (17, see also Hochschild with Machung 128). Several contemporary studies (Meisenbach; Shelton and Johnson) report that women perform the majority of domestic and care duties, despite women’s long established presence in the paid workforce. Indeed, historically, the majority of women participated in the workforce, with only middle and upper-class women experiencing a delayed entry to paid work. In their review of current research into the division of household labour in the United States Lachance-Grzela and Bouchard find that: In spite of women’s increased commitment to the labour force market and their associated political and social achievements, their advances have not been paralleled in the familiar sphere…the gains women have made outside the home have not translated directly into an egalitarian allocation of household labour…[American] women continue to perform the vast majority of unpaid tasks performed to satisfy the needs of family members or to maintain the home. (767) Exchange theories predicted that women’s increased participation in paid work would stimulate an increase in the time men spent performing domestic work (Carter 16). However, various studies including Lupton’s investigation into the distinctions, or indeed, commonalities, between the roles of “mother” and “father” find that women still perform the majority of childcare and domestic labour, even those who are also engaged in paid employment. Time use studies conducted by the Australian Bureau of Statistics also suggest that this prediction has not eventuated, and that whilst some women may have an improved capacity to negotiate with their partners about domestic labour division because of their income, this is not always the case (Carter 17). Ella (aged 32, mother of one) described “quite enjoying it” when her partner was away on business because it was less work not having to deal with his mess on top of other tasks. This is consistent with earlier research findings that single mothers spend less time on domestic work than women with children who live with men (Carter 17). It is common for men to do less domestic work than they create (Bittman 3). All of the women I interviewed who were in partnerships and intending to mother sometime in the future were either employed full-time in the paid sector, seeking full-time employment after completing graduate degrees, or combining paid work with tertiary study. One participant had recently dropped her hours from full-time to part-time because she was pregnant. All of the partnered women who were already mothering at the time of the interview were in full-time employment before the birth of their first child, and seven of them were still in paid employment; one full-time, one three-quarter time and five part time. Most women reported doing the majority, if not all, of the domestic and childcare labour regardless of whether they combined this work with paid work outside of the home. Whilst some women were indifferent to the inequity in their domestic labour and childcare responsibilities, most identified it as a source of tension, conflict, and disappointment in their spousal relationships. These women had anticipated greater participation by their husbands in the home, an optimism derived from some other source than those women with whom they interact.Anticipating Participation In their in-depth psychological study into the specific temporal disruptions and occasions of social dislocation ensuing from the birth of a child in the United States, Monk et al. found that the disruption to daily events and the reduction of social activities were more discernible for women than for men. Other research (Arendell; Hays; Mauthner; Nicolson) conducted at this time concurred with these findings. Similar results are found over a decade later. Choi et al. found most women feel at least some resentment about the impact of parenthood on their lives being “far greater for them than for their partner” (174). Influenced by reports of a supposed ideological shift in the late 1990s wherein fathers were encouraged to take a more active role in the raising of their children in ways previously considered maternal (Lupton 51), women today tend to anticipate that their husband’s will participate more in domestic and care activities, which predominately, does not eventuate. Consequently, feeling “let down” by partners has been identified as a key factor in the presentation of postnatal depression (Choi et al. 175). The women I interviewed who were planning to mother sometime in the future anticipated that their husbands would participate more in the home after the birth of a child. Gabrielle (aged 25, married for three years) hoped that this would be an 80/20 split. The idea of an 80/20 split as an “improvement” may be confronting, but this is Gabrielle’s reality, and her predicament—shared by many other women today—captures the prevailing importance of discussions around the gendered division of domestic labour. Several interviewees who were already mothering had also anticipated that their husbands would participate alongside them in household and childcare related activities. For most, this kind of participation had not eventuated and women were left with feelings of disappointment, and tensions and conflicts in their marriages. Grainne (aged 30, married for five years, mother of one) had expected her husband to be reasonably supportive and helpful around the house when they started their family. Yet she was unpleasantly surprised and intensely disappointed by how participation in the home had worked out since she and her husband had become parents six months ago. Grainne explained that she: expected that my husband would be more supportive and more helpful…I’ve been even more disappointed because he hasn’t followed through with…how I thought he would be…I almost despair a bit…we have actually struggled more in our relationship in the last six months than in the five and a half years. Grainne spoke about the impact of this inequity on the intimacy in her relationship. This is consistent with Pocock who identifies inequity in the division of unpaid work as one of “two work-related spokes in the wheel” (106–107) of spousal intimacy; the other being time and energy to communicate. According to Pocock intimacy, not necessarily sexual, is lacking in many Australian spousal relationships with unequal divisions of unpaid labour (107). While the loss of intimacy results in feelings of loss and regret, for some women, it is characterised as a past concern in their overworked and stressed lives (Pocock 107). Several women from professional backgrounds, in particular Lena and Freya, identified the inequity in their partnerships when it came to home duties and childcare as a significant, and even as the “main,” source of tension and conflict in their spousal relationships. Lena (aged 30, married for five years, mother of two) described having “great debates” with her husband about the division of domestic labour and childcare in their partnership. From her husband’s perspective, it is her “job…to do all the kids and the housework and everything else,” whereas from Lena’s perspective, “he should be able to feed the kids and clean up” on the weekend if she needs to go out. Freya (aged 30, married for ten years, mother of three) also talked about the “various rows” she had had with her husband about her domestic and childcare load. She described herself as “not coping” with the workload. For all of these women, domestic inequality in their marriages has real emotional consequences for them as individuals, and is a significant source of marital discontent. Women’s decisions about whether and when to have children, and how many to have, are influenced by the inequity experienced in marital relationships. Although I suggest that women’s desire to become mothers may eventually outweigh these immediate and everyday concerns, reports from already mothering women suggest that this source of conflict does not dissipate. The evidence gathered from my interviews demonstrates that trying to change dynamics in a relationship, when it comes to domestic tasks, is even more difficult when it is compounded with the emotional, mental and physical demands of motherhood, as Choi et al. also suggest (177).Accepting Inequality The findings of my study suggest that women intending to mother and those already mothering continue to expect to do more domestic and childcare labour than their partners. However, even with this concession, some women are still over-optimistic in their estimations about the amount of domestic labour their partner’s will perform. Fetterolf and Eagly find similar patterns in gender equality expectations in the United States amongst female college undergraduates planning to mother sometime in the future (90–91). Some women I interviewed who were planning to mother sometime in the future described their own attempts to negotiate with their partner to make them do more work. For instance, Gabrielle (aged 25, married for three years), who, as discussed earlier, hoped that her husband will participate more in the home after the birth of a child, said: Once we’ve had kids he might change and realise he might have to help out a little bit more, I can’t actually do everything…I don’t think it’ll be 50/50 just from experience of how we’ve been married so far… I do hope that it’ll be maybe 80/20 or something like that. When asked about whether their current division of house work was a concern for her, particularly in relation to having children, Gabrielle replied that she just “nagged” about it. Putting her discontent in the frame of “nagging” trivialises the issue. While it is men who tend to characterise women’s discontent as “nagging,” women can also internalise, and use this language to minimise their own feelings. That men “just don’t see mess and dirt” in the same way that women do is a popular idea drawn on to account for women’s acceptance of inequity in the home as evidenced in numerous statements from the women I interviewed. Commentaries like these align with Carter’s (1) observations that generally accepted ideas about women and men (for example, that women see dirt and men do not) are drawn on to explain and justify domestic labour arrangements. In response to how domestic labour is divided between her husband and herself, Marguerite (aged 25, married for ten months), like Gabrielle (aged 25, married for three years), described an “80/20 split,” with her as the 80%. Marguerite commented that “it’s not that he’s lazy, it’s just that he doesn’t see it, he doesn’t realise that a house needs cleaning.” Fallding described these ideas, and the behaviours that ensue, as a type of patriarchal family model, specifically “rightful patriarchy” (69) that includes the idea that women naturally pay more attention to detail than men. Conclusion “Falling in love” and “getting married” remains an important cultural narrative in Australian society. As Gabrielle (aged 25, married for three years) described, people ask you “when are you getting married? When are you having kids?” because “that’s just what you do.” I argue that offering critical accounts of heteronormative monogamous relationships/marriage equality from a variety of positions is important to understandings of these relationships in contemporary Australia. Accounts of the division of unpaid labour in the home between spouses provide one forum through which equality within marriage/heteronormative monogamous relationships can be examined. A tension exists between an expectation of participation on the part of women about their partner’s role in the home, and a latent acceptance by most women that equality in the division of unpaid work is unrealistic and unachievable. Men remain largely removed from work in the home and appear to have a degree of choice about their level of participation in domestic and care duties. The consistency of these findings with earlier work, some of which is over a decade old, suggests that the way families divide unpaid domestic and care labour remains gendered, despite significant changes in other aspects of gender relations. Many of the current discussions about marriage idealise it in ways that are not borne out in this research. This idealisation feeds into the romance of marriage, which maintains women’s investment in it, and thus the likelihood that they will find themselves in a relationship that disappoints them in significant and easily dismissed ways.ReferencesAustralian Bureau of Statistics. Australian Social Trends, 2003, Family Functioning: Balancing Family and Work. 4102.0 (2010). ‹http://www.abs.gov.au/ausstats/abs@.nsf/7d12b0f6763c78caca257061001cc588/c8647f1dd5f36f42ca2570eb00835397!OpenDocument›. Australian Bureau of Statistics. Australian Social Trends, 2010, Parental Divorce or Death During Childhood. 4102.0 (2010). ‹http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Main+Features40Sep+2010›. Arendell, Terry. “Conceiving and Investigating Motherhood: The Decade's Scholarship.” Journal of Marriage and the Family 62.4 (2000): 1192–207. Bittman, Michael. Juggling Time: How Australian Families Use Time. Office of the Status of Women, Department of the Prime Minister and Cabinet: Canberra, 1991. Carter, Meg. Who Cares Anyway? Negotiating Domestic Labour in Families with Teenage Kids. (Doctoral dissertation). (2007). ‹http://researchbank.swinburne.edu.au/vital/access/manager/Repository/swin:15946.› Choi, P., Henshaw, C , Baker, S, and J Tree. "Supermum, Superwife, Supereverything: Performing Femininity in the Transition to Motherhood." Journal of Reproductive and Infant Psychology 23.2 (2005): 167–180. Coffey, Amanda. The Ethnographic Self: Fieldwork and the Representation of Identity. London: Sage Publications, 1999. Coltrane, Scott. “Research on Household Labour: Modelling and Measuring Social Embeddedness of Routine Family Work.” Journal of Marriage and Family 62.4 (2000): 1208-1233. Conle, Carola. 2000. “Narrative Inquiry: Research Tool and Medium for Professional Development.” European Journal of Teacher Education 23.1 (2000): 773-97. DeVault, Marjorie. Feeding the Family: The Social Organisation of Caring as Gendered Work. Chicago: Chicago UP, 1991. Fallding, Harold. “Inside the Australian Family.” Marriage and the Family in Australia. Ed. Adolphus Elkin. Sydney: Angus and Robertson, 1957. 54–81. Fetterolf, Janell and Alice Eagly. “Do Young Women Expect Gender Equality in Their Future Lives? An Answer From a Possible Selves Experiment.” Sex Roles 65.1 (2011): 83–93. Hays, Susan. The Cultural Contradictions of Motherhood. New Haven: Yale UP, 1996. Hochschild, Arlie. The Second Shift. New York: Viking, 1989. Hochschild, Arlie with Anne Machung. The Second Shift. New York: Penguin Edition, 2003. Lachance-Grzela, Mylene, and Genevieve Bouchard. “Why Do Women Do the Lion's Share of Housework? A Decade of Research.” Sex Roles 63.1 (2010): 767–80. Lupton, Deborah. “‘A Love/Hate Relationship’: the Ideals and Experiences of First-Time Mothers.” Journal of Sociology 36.1 (2000): 50–63. Mauthner, Natasha. “Reassessing the Importance and Role of the Marital Relationship in Postnatal Depression: Methodological and Theoretical Implications.” Journal of Reproductive and Infant Psychology 1.16 (1998): 157–75. Meisenbach, Rebecca. “The Female Breadwinner: Phenomenological Experience and Gendered Identity in Work/Family Spaces.” Sex Roles 62.1 (2010): 2–19. Monk, Timonthy H., Marilyn J. Essex, Nancy A. Smider, Marjorie H. Klein, and David J. Kupfer. “The Impact of the Birth of a Baby on the Time Structure and Social Mixture of a Couple's Daily Life and Its Consequences for Well-Being.” Journal of Applied Social Psychology 26.14 (1996): 1237– 58. Nicolson, Paula. Postnatal Depression: Psychology, Science and the Transition to Motherhood. London: Routledge, 1998. Pocock, Barbara. The Work/Life Collision: What Work is Doing to Australians and What to Do About It. Sydney: The Federation Press, 2003. Ramazanoglu, Caroline and Janet Holland. Feminist Methodology: Challenges and Choices. London: Sage, 2002. Scott, Joan. “The Evidence of Experience.” Critical Inquiry 17.4 (1991): 773–97. Shelton, Nikki, and Sally Johnson. “'I Think Motherhood for Me Was a Bit Like a Double-Edged Sword': The Narratives of Older Mothers.” Journal of Community and Applied Social Psychology 16.1 (2006): 316–30. Skrbis, Zlatko, Mark Western, Bruce Tranter, David Hogan, Rebecca Coates, Jonathan Smith, Belinda Hewitt, and Margery Mayall. “Expecting the Unexpected: Young People’s Expectations about Marriage and Family.” Journal of Sociology 48.1 (2012): 63–83.

Despite numerous critics describing him as an auteur (i.e. a film-maker who ‘does’ everything and fulfils every production role [Bordwell and Thompson 37] and/or with a signature “world-view” detectable in his/her work [Caughie 10]), Rolf de Heer appears to have declined primary authorship of Dance Me to My Song (1997), his seventh in an oeuvre of twelve feature films. Indeed, the opening credits do not mention his name at all: it is only with the closing credits that the audience learns de Heer has directed the film. Rather, as the film commences, the viewer is informed by the titles that it is “A film by Heather Rose”, thus suggesting that the work is her singular creation. Direct and uncompromising, with its unflattering shots of the lead actor and writer (Heather Rose Slattery, a young woman born with cerebral palsy), the film may be read as a courageous self-portrait which finds the grace, humanity and humour trapped inside Rose’s twisted body. Alternatively, it may be read as yet another example of de Heer’s signature interest in foregrounding a world view which gives voice to marginalised characters such as the disabled or the disadvantaged. For example, the developmentally retarded eponyme of Bad Boy Bubby (1993) is eventually able to make art as a singer in a band and succeeds in creating a happy family with a wife and two kids. The ‘mute’ girl in The Quiet Room (1996) makes herself heard by her squabbling parents through her persistent activism. In Ten Canoes (2006) the Indigenous Australians cast themselves according to kinship ties, not according to the director’s choosing, and tell their story in their own uncolonised language. A cursory glance at the films of Rolf de Heer suggests he is overtly interested in conveying to the audience the often overlooked agency of his unlikely protagonists. In the ultra-competitive world of professional film-making it is rare to see primary authorship ceded by a director so generously. However, the allocation of authorship to a member of a marginalized population re-invigorates questions prompted by Andy Medhurst regarding a film’s “authorship test” (198) and its relationship to a subaltern community wherein he writes that “a biographical approach has more political justification if the project being undertaken is one concerned with the cultural history of a marginalized group” (202-3). Just as films by gay authors about gay characters may have greater credibility, as Medhurst posits, one might wonder would a film by a person with a disability about a character with the same disability be better received? Enabling authorship by an unknown, crippled woman such as Rose rather than a famous, able-bodied male such as de Heer may be cynically regarded as good (show) business in that it is politically correct. This essay therefore asks if the appellation “A film by Heather Rose” is appropriate for Dance Me to My Song. Whose agency in telling the story (or ‘doing’ the film-making), the able bodied Rolf de Heer or the disabled Heather Rose, is reflected in this cinematic production? In other words, whose voice is enabled when an audience receives this film? In attempting to answer these questions it is inevitable that Paul Darke’s concept of the “normality drama” (181) is referred to and questioned, as I argue that Dance Me to My Song makes groundbreaking departures from the conventions of the typical disability narrative. Heather Rose as Auteur Rose plays the film’s heroine, Julia, who like herself has cerebral palsy, a group of non-progressive, chronic disorders resulting from changes produced in the brain during the prenatal stages of life. Although severely affected physically, Rose suffered no intellectual impairment and had acted in Rolf de Heer’s cult hit Bad Boy Bubby five years before, a confidence-building experience that grew into an ongoing fascination with the filmmaking process. Subsequently, working with co-writer Frederick Stahl, she devised the scenario for this film, writing the lead role for herself and then proactively bringing it to de Heer’s attention. Rose wrote of de Heer’s deliberate lack of involvement in the script-writing process: “Rolf didn’t even want to read what we’d done so far, saying he didn’t want to interfere with our process” (de Heer, “Production Notes”). In 2002, aged 36, Rose died and Stahl reports in her obituary an excerpt from her diary: People see me as a person who has to be controlled. But let me tell you something, people. I am not! And I am going to make something real special of my life! I am going to go out there and grab life with both hands!!! I am going to make the most sexy and honest film about disability that has ever been made!! (Stahl, “Standing Room Only”) This proclamation of her ability and ambition in screen-writing is indicative of Rose’s desire to do. In a guest lecture Rose gave further insights into the active intent in writing Dance Me to My Song: I wanted to create a screenplay, but not just another soppy disability film, I wanted to make a hot sexy film, which showed the real world … The message I wanted to convey to an audience was “As people with disabilities, we have the same feelings and desires as others”. (Rose, “ISAAC 2000 Conference Presentation”) Rose went on to explain her strategy for winning over director de Heer: “Rolf was not sure about committing to the movie; I had to pester him really. I decided to invite him to my birthday party. It took a few drinks, but I got him to agree to be the director” (ibid) and with this revelation of her tactical approach her film-making agency is further evidenced. Rose’s proactive innovation is not just evident in her successfully approaching de Heer. Her screenplay serves as a radical exception to films featuring disabled persons, which, according to Paul Darke in 1998, typically involve the disabled protagonist struggling to triumph over the limitations imposed by their disability in their ‘admirable’ attempts to normalize. Such normality dramas are usually characterized by two generic themes: first, that the state of abnormality is nothing other than tragic because of its medical implications; and, second, that the struggle for normality, or some semblance of it in normalization – as represented in the film by the other characters – is unquestionably right owing to its axiomatic supremacy. (187) Darke argues that the so-called normality drama is “unambiguously a negation of ascribing any real social or individual value to the impaired or abnormal” (196), and that such dramas function to reinforce the able-bodied audience’s self image of normality and the notion of the disabled as the inferior Other. Able-bodied characters are typically portrayed positively in the normality drama: “A normality as represented in the decency and support of those characters who exist around, and for, the impaired central character. Thus many of the disabled characters in such narratives are bitter, frustrated and unfulfilled and either antisocial or asocial” (193). Darke then identifies The Elephant Man (David Lynch, 1980) and Born on the Fourth of July (Oliver Stone, 1989) as archetypal films of this genre. Even in films in which seemingly positive images of the disabled are featured, the protagonist is still to be regarded as the abnormal Other, because in comparison to the other characters within that narrative the impaired character is still a comparatively second-class citizen in the world of the film. My Left Foot is, as always, a prime example: Christy Brown may well be a writer, relatively wealthy and happy, but he is not seen as sexual in any way (194). However, Dance Me to My Song defies such generic restrictions: Julia’s temperament is upbeat and cheerful and her disability, rather than appearing tragic, is made to look healthy, not “second class”, in comparison with her physically attractive, able-bodied but deeply unhappy carer, Madelaine (Joey Kennedy). Within the first few minutes of the film we see Madelaine dissatisfied as she stands, inspecting her healthy, toned and naked body in the bathroom mirror, contrasted with vision of Julia’s twisted form, prostrate, pale and naked on the bed. Yet, in due course, it is the able-bodied girl who is shown to be insecure and lacking in character. Madelaine steals Julia’s money and calls her “spastic”. Foul-mouthed and short-tempered, Madelaine perversely positions Julia in her wheelchair to force her to watch as she has perfunctory sex with her latest boyfriend. Madelaine even masquerades as Julia, commandeering her voice synthesizer to give a fraudulently positive account of her on-the-job performance to the employment agency she works for. Madelaine’s “axiomatic supremacy” is thoroughly undermined and in the most striking contrast to the typical normality drama, Julia is unashamedly sexual: she is no Christy Brown. The affective juxtaposition of these two different personalities stems from the internal nature of Madelaine’s problems compared to the external nature of Julia’s problems. Madelaine has an emotional disability rather than a physical disability and several scenes in the film show her reduced to helpless tears. Then one day when Madelaine has left her to her own devices, Julia defiantly wheels herself outside and bumps into - almost literally - handsome, able-bodied Eddie (John Brumpton). Cheerfully determined, Julia wins him over and a lasting friendship is formed. Having seen the joy that sex brings to Madelaine, Julia also wants carnal fulfilment so she telephones Eddie and arranges a date. When Eddie arrives, he reads the text on her voice machine’s screen containing the title line to the film ‘Dance me to my song’ and they share a tender moment. Eddie’s gentleness as he dances Julia to her song (“Kizugu” written by Bernard Huber and John Laidler, as performed by Okapi Guitars) is simultaneously contrasted with the near-date-rapes Madelaine endures in her casual relationships. The conflict between Madeline and Julia is such that it prompts Albert Moran and Errol Vieth to categorize the film as “women’s melodrama”: Dance Me to My Song clearly belongs to the genre of the romance. However, it is also important to recognize it under the mantle of the women’s melodrama … because it has to do with a woman’s feelings and suffering, not so much because of the flow of circumstance but rather because of the wickedness and malevolence of another woman who is her enemy and rival. (198-9) Melodrama is a genre that frequently resorts to depicting disability in which a person condemned by society as disabled struggles to succeed in love: some prime examples include An Affair to Remember (Leo McCarey, 1957) involving a paraplegic woman, and The Piano (Jane Campion, 1993) in which a strong-spirited but mute woman achieves love. The more conventional Hollywood romances typically involve attractive, able-bodied characters. In Dance Me to My Song the melodramatic conflict between the two remarkably different women at first seems dominated by Madelaine, who states: “I know I’m good looking, good in bed ... better off than you, you poor thing” in a stream-of-consciousness delivery in which Julia is constructed as listener rather than converser. Julia is further reduced to the status of sub-human as Madelaine says: “I wish you could eat like a normal person instead of a bloody animal” and her erstwhile boyfriend Trevor says: “She looks like a fuckin’ insect.” Even the benevolent Eddie says: “I don’t like leaving you alone but I guess you’re used to it.” To this the defiant Julia replies; “Please don’t talk about me in front of me like I’m an animal or not there at all.” Eddie is suitably chastised and when he treats her to an over-priced ice-cream the shop assistant says “Poor little thing … She’ll enjoy this, won’t she?” Julia smiles, types the words “Fuck me!”, and promptly drops the ice-cream on the floor. Eddie laughs supportively. “I’ll just get her another one,” says the flustered shop assistant, “and then get her out of here, please!” With striking eloquence, Julia wheels herself out of the shop, her voice machine announcing “Fuck me, fuck me, fuck me, fuck me, fuck me”, as she departs exultantly. With this bold statement of independence and defiance in the face of patronising condescension, the audience sees Rose’s burgeoning strength of character and agency reflected in the onscreen character she has created. Dance Me to My Song and the films mentioned above are, however, rare exceptions in the many that dare represent disability on the screen at all, compliant as the majority are with Darke’s expectations of the normality drama. Significantly, the usual medical-model nexus in many normality films is ignored in Rose’s screenplay: no medication, hospitals or white laboratory coats are to be seen in Julia’s world. Finally, as I have described elsewhere, Julia is shown joyfully dancing in her wheelchair with Eddie while Madelaine proves her physical inferiority with a ‘dance’ of frustration around her broken-down car (see Starrs, "Dance"). In Rose’s authorial vision, audience’s expectations of yet another film of the normality drama genre are subverted as the disabled protagonist proves superior to her ‘normal’ adversary in their melodramatic rivalry for the sexual favours of an able-bodied love-interest. Rolf de Heer as Auteur De Heer does not like to dwell on the topic of auteurism: in an interview in 2007 he somewhat impatiently states: I don’t go in much for that sort of analysis that in the end is terminology. … Look, I write the damn things, and direct them, and I don’t completely produce them anymore – there are other people. If that makes me an auteur in other people’s terminologies, then fine. (Starrs, "Sounds" 20) De Heer has been described as a “remarkably non-egotistical filmmaker” (Davis “Working together”) which is possibly why he handed ownership of this film to Rose. Of the writer/actor who plied him with drink so he would agree to back her script, de Heer states: It is impossible to overstate the courage of the performance that you see on the screen. … Heather somehow found the means to respond on cue, to maintain the concentration, to move in the desired direction, all the myriad of acting fundamentals that we take for granted as normal things to do in our normal lives. (“Production NHotes”) De Heer’s willingness to shift authorship from director to writer/actor is representative of this film’s groundbreaking promotion of the potential for agency within disability. Rather than being passive and suffering, Rose is able to ‘do.’ As the lead actor she is central to the narrative. As the principle writer she is central to the film’s production. And she does both. But in conflict with this auteurial intent is the temptation to describe Dance Me to My Song as an autobiographical documentary, since it is Rose herself, with her unique and obvious physical handicap, playing the film’s heroine, Julia. In interview, however, De Heer apparently disagrees with this interpretation: Rolf de Heer is quick to point out, though, that the film is not a biography.“Not at all; only in the sense that writers use material from their own lives.Madelaine is merely the collection of the worst qualities of the worst carers Heather’s ever had.” Dance Me to My Song could be seen as a dramatised documentary, since it is Rose herself playing Julia, and her physical or surface life is so intense and she is so obviously handicapped. While he understands that response, de Heer draws a comparison with the first films that used black actors instead of white actors in blackface. “I don’t know how it felt emotionally to an audience, I wasn’t there, but I think that is the equivalent”. (Urban) An example of an actor wearing “black-face” to portray a cerebral palsy victim might well be Gus Trikonis’s 1980 film Touched By Love. In this, the disabled girl is unconvincingly played by the pretty, able-bodied actress Diane Lane. The true nature of the character’s disability is hidden and cosmeticized to Hollywood expectations. Compared to that inauthentic film, Rose’s screenwriting and performance in Dance Me to My Song is a self-penned fiction couched in unmediated reality and certainly warrants authorial recognition. Despite his unselfish credit-giving, de Heer’s direction of this remarkable film is nevertheless detectable. His auteur signature is especially evident in his technological employment of sound as I have argued elsewhere (see Starrs, "Awoval"). The first distinctly de Heer influence is the use of a binaural recording device - similar to that used in Bad Boy Bubby (1993) - to convey to the audience the laboured nature of Julia’s breathing and to subjectively align the audience with her point of view. This apparatus provides a disturbing sound bed that is part wheezing, part grunting. There is no escaping Julia’s physically unusual life, from her reliance on others for food, toilet and showering, to the half-strangled sounds emanating from her ineffectual larynx. But de Heer insists that Julia does speak, like Stephen Hawkings, via her Epson RealVoice computerized voice synthesizer, and thus Julia manages to retain her dignity. De Heer has her play this machine like a musical instrument, its neatly modulated feminine tones immediately prompting empathy. Rose Capp notes de Heer’s preoccupation with finding a voice for those minority groups within the population who struggle to be heard, stating: de Heer has been equally consistent in exploring the communicative difficulties underpinning troubled relationships. From the mute young protagonist of The Quiet Room to the aphasic heroine of Dance Me to My Song, De Heer’s films are frequently preoccupied with the profound inadequacy or outright failure of language as a means of communication (21). Certainly, the importance to Julia of her only means of communication, her voice synthesizer, is stressed by de Heer throughout the film. Everybody around her has, to varying degrees, problems in hearing correctly or understanding both what and how Julia communicates with her alien mode of conversing, and she is frequently asked to repeat herself. Even the well-meaning Eddie says: “I don’t know what the machine is trying to say”. But it is ultimately via her voice synthesizer that Julia expresses her indomitable character. When first she meets Eddie, she types: “Please put my voice machine on my chair, STUPID.” She proudly declares ownership of a condom found in the bathroom with “It’s mine!” The callous Madelaine soon realizes Julia’s strength is in her voice machine and withholds access to the device as punishment for if she takes it away then Julia is less demanding for the self-centred carer. Indeed, the film which starts off portraying the physical superiority of Madelaine soon shows us that the carer’s life, for all her able-bodied, free-love ways, is far more miserable than Julia’s. As de Heer has done in many of his other films, a voice has been given to those who might otherwise not be heard through significant decision making in direction. In Rose’s case, this is achieved most obviously via her electric voice synthesizer. I have also suggested elsewhere (see Starrs, "Dance") that de Heer has helped find a second voice for Rose via the language of dance, and in doing so has expanded the audience’s understandings of quality of life for the disabled, as per Mike Oliver’s social model of disability, rather than the more usual medical model of disability. Empowered by her act of courage with Eddie, Julia sacks her uncaring ‘carer’ and the film ends optimistically with Julia and her new man dancing on the front porch. By picturing the couple in long shot and from above, Julia’s joyous dance of triumph is depicted as ordinary, normal and not deserving of close examination. This happy ending is intercut with a shot of Madeline and her broken down car, performing her own frustrated dance and this further emphasizes that she was unable to ‘dance’ (i.e. communicate and compete) with Julia. The disabled performer such as Rose, whether deliberately appropriating a role or passively accepting it, usually struggles to placate two contrasting realities: (s)he is at once invisible in the public world of interhuman relations and simultaneously hyper-visible due to physical Otherness and subsequent instantaneous typecasting. But by the end of Dance Me to My Song, Rose and de Heer have subverted this notion of the disabled performer grappling with the dual roles of invisible victim and hyper-visible victim by depicting Julia as socially and physically adept. She ‘wins the guy’ and dances her victory as de Heer’s inspirational camera looks down at her success like an omniscient and pleased god. Film academic Vivian Sobchack writes of the phenomenology of dance choreography for the disabled and her own experience of waltzing with the maker of her prosthetic leg, Steve, with the comment: “for the moment I did displace focus on my bodily immanence to the transcendent ensemble of our movement and I really began to waltz” (65). It is easy to imagine Rose’s own, similar feeling of bodily transcendence in the closing shot of Dance Me to My Song as she shows she can ‘dance’ better than her able-bodied rival, content as she is with her self-identity. Conclusion: Validation of the Auteurial OtherRolf de Heer was a well-known film-maker by the time he directed Dance Me to My Song. His films Bad Boy Bubby (1993) and The Quiet Room (1996) had both screened at the Cannes International Film Festival. He was rapidly developing a reputation for non-mainstream representations of marginalised, subaltern populations, a cinematic trajectory that was to be further consolidated by later films privileging the voice of Indigenous Peoples in The Tracker (2002) and Ten Canoes (2006), the latter winning the Special Jury prize at Cannes. His films often feature unlikely protagonists or as Liz Ferrier writes, are “characterised by vulnerable bodies … feminised … none of whom embody hegemonic masculinity” (65): they are the opposite of Hollywood’s hyper-masculine, hard-bodied, controlling heroes. With a nascent politically correct worldview proving popular, de Heer may have considered the assigning of authorship to Rose a marketable idea, her being representative of a marginalized group, which as Andy Medhurst might argue, may be more politically justifiable, as it apparently is with films of gay authorship. However, it must be emphasized that there is no evidence that de Heer’s reticence about claiming authorship of Dance Me to My Song is motivated by pecuniary interests, nor does he seem to have been trying to distance himself from the project through embarrassment or dissatisfaction with the film or its relatively unknown writer/actor. Rather, he seems to be giving credit for authorship where credit is due, for as a result of Rose’s tenacity and agency this film is, in two ways, her creative success. Firstly, it is a rare exception to the disability film genre defined by Paul Darke as the “normality drama” because in the film’s diegesis, Julia is shown triumphing not simply over the limitations of her disability, but over her able-bodied rival in love as well: she ‘dances’ better than the ‘normal’ Madelaine. Secondly, in her gaining possession of the primary credits, and the mantle of the film’s primary author, Rose is shown triumphing over other aspiring able-bodied film-makers in the notoriously competitive film-making industry. Despite being an unpublished and unknown author, the label “A film by Heather Rose” is, I believe, a deserved coup for the woman who set out to make “the most sexy and honest film about disability ever made”. As with de Heer’s other films in which marginalised peoples are given voice, he demonstrates a desire not to subjugate the Other, but to validate and empower him/her. He both acknowledges their authorial voices and credits them as essential beings, and in enabling such subaltern populations to be heard, willingly cedes his privileged position as a successful, white, male, able-bodied film-maker. In the credits of this film he seems to be saying ‘I may be an auteur, but Heather Rose is a no less able auteur’. References Bordwell, David and Kristin Thompson. Film Art: An Introduction, 4th ed. New York: McGraw-Hill, 1993. Capp, Rose. “Alexandra and the de Heer Project.” RealTime + Onscreen 56 (Aug.-Sep. 2003): 21. 6 June 2008 ‹http://www.realtimearts.net/article/issue56/7153›. Caughie, John. “Introduction”. Theories of Authorship. Ed. John Caughie. London: Routledge and Kegan Paul, 1981. 9-16. Darke, Paul. “Cinematic Representations of Disability.” The Disability Reader. Ed. Tom Shakespeare. London and New York: Cassell, 1988. 181-198. Davis, Therese. “Working Together: Two Cultures, One Film, Many Canoes.” Senses of Cinema 2006. 6 June 2008 ‹http://www.sensesofcinema.com/contents/06/41/ten-canoes.html›. De Heer, Rolf. “Production Notes.” Vertigo Productions. Undated. 6 June 2008 ‹http://www.vertigoproductions.com.au/information.php?film_id=10&display=notes›. Ferrier, Liz. “Vulnerable Bodies: Creative Disabilities in Contemporary Australian Film.” Australian Cinema in the 1990s. Ed. Ian Craven. London and Portland: Frank Cass and Co., 2001. 57-78. Medhurst, Andy. “That Special Thrill: Brief Encounter, Homosexuality and Authorship.” Screen 32.2 (1991): 197-208. Moran, Albert, and Errol Veith. Film in Australia: An Introduction. Melbourne: Cambridge UP, 2006. Oliver, Mike. Social Work with Disabled People. Basingstoke: MacMillan, 1983. Rose Slattery, Heather. “ISAAC 2000 Conference Presentation.” Words+ n.d. 6 June 2008 ‹http://www.words-plus.com/website/stories/isaac2000.htm›. Sobchack, Vivian. “‘Choreography for One, Two, and Three Legs’ (A Phenomenological Meditation in Movements).” Topoi 24.1 (2005): 55-66. Stahl, Frederick. “Standing Room Only for a Thunderbolt in a Wheelchair,” Sydney Morning Herald 31 Oct. 2002. 6 June 2008 ‹http://www.smh.com.au/articles/2002/10/30/1035683471529.html›. Starrs, D. Bruno. “Sounds of Silence: An Interview with Rolf de Heer.” Metro 152 (2007): 18-21. ———. “An avowal of male lack: Sound in Rolf de Heer’s The Old Man Who Read Love Stories (2003).” Metro 156 (2008): 148-153. ———. “Dance Me to My Song (Rolf de Heer 1997): The Story of a Disabled Dancer.” Proceedings Scopic Bodies Dance Studies Research Seminar Series 2007. Ed. Mark Harvey. University of Auckland, 2008 (in press). Urban, Andrew L. “Dance Me to My Song, Rolf de Heer, Australia.” Film Festivals 1988. 6 June 2008. ‹http://www.filmfestivals.com/cannes98/selofus9.htm›.

Introduction Historically in Australia, there has been a growing movement behind the development of quality Early Childhood Education and Care Centres (termed ‘centres’ for this article). These centres are designed to provide care and education outside of the home for children from birth to five years old. In the mid 1980s, the then Labor Government of Australia promoted and funded the establishment of many centres to provide women who were at home with children the opportunity to move into the workplace. Centre fees were heavily subsidised to make this option viable in the hope that more women would become employed and Australia’s rising unemployment statistics would be reduced. The popularity of this system soon meant that there was a childcare centre shortage and parents were faced with long waiting lists to enrol their child into a centre. To alleviate this situation, independent centres were established that complied with Government rules and regulations. Independent, state, and local government funded centres had a certain degree of autonomy over facilities, staffing, qualifications, quality programmes, and facilities. This movement became part of the global increased focus on the importance of early childhood education. As part of that educational emphasis, the Melbourne Declaration on Educational Goals for Young Australians in 2008 set the direction for schooling for the next 10 years. This formed the basis of Australia’s Education Reforms (Department of Education, Employment and Workplace Relations). The reforms have influenced the management of early childhood education and care centres. All centres must comply with the National Quality Framework that mandates staff qualifications, facility standards, and the ratios of children to adults. From a parent’s perspective centres now look very much the same. All centres have indoor and outdoor playing spaces, separate rooms for differently aged children, playgrounds, play equipment, foyer and office spaces with similarly qualified staff. With these similarities in mind, the dilemma for parents is how to decide on a centre for their child to attend. Does it come down to parents’ taste about a centre? In the education context, how is taste conceptualised? This article will present research that conceptualises taste as being part of a decision-making process (DMP) that is used by parents when choosing a centre for their child and, in doing so, will introduce the term: parental taste. The Determining Factors of Taste A three phase, sequential, mixed methods study was used to determine how parents select one centre over another. Cresswell described this methodology as successive phases of data collection, where each builds on the previous, with the aim of addressing the research question. This process was seen as a method to identify parents’ varying tastes in centres considered for their child to attend. Phase 1 used a survey of 78 participants to gather baseline data to explore the values, expectations, and beliefs of the parents. It also determined the aspects of the centre important to parents, and gauged the importance of the socio-economic status and educational backgrounds of the participants in their decision making. Phase 2 built on the phase 1 data and included interviews with 20 interviewees exploring the details of the decision-making process (DMP). This phase also elaborated on the survey questions and responses, determined the variables that might impact on the DMP, and identified how parents access information about early learning centres. Phase 3 focussed on parental satisfaction with their choice of early learning setting. Again using 20 interviewees, these interviews investigated the DMP that had been undertaken, as well as any that might still be ongoing. This phase focused on parents' reflection on the DMP used and questioned them as to whether the same process would be used again in other areas of decision making. Thematic analysis of the data revealed that it usually fell to the mother to explore centre options and make the decision about enrolment. Along the way, she may have discussions with the father and, to a lesser extent, with the centre staff. Friends, relatives, the child, siblings, and other educational professionals did not rank highly when the decision was being considered. Interestingly, it was found that the mother began to consider childcare options and the need for care twelve months or more before care was required and a decision had to be made. A small number of parents (three from the 20) said that they thought about it while pregnant but felt silly because they “didn’t even have a baby yet.” All mothers said that it took quite a while to get their head around leaving their child with someone else, and this anxiety and concern increased the younger the child was. Two parents had criteria that they did not want their child in care until he/she could talk and walk, so that the child could look after him- or herself to some extent. This indicated some degree of scepticism that their child would be cared for appropriately. Parents who considered enrolling their child into care closer to when it was required generally chose to do this because they had selected a pre-determined age that their child would go into childcare. A small number of parents (two) decided that their child would not attend a centre until three years old, while other parents found employment and had to find care quickly in response. The survey results showed that the aspects of a centre that most influenced parental decision-making were the activities and teaching methods used by staff, centre reputation, play equipment inside and outside the centre, and the playground size and centre buildings. The interview responses added to this by suggesting that the type of playground facilities available were important, with a natural environment being preferred. Interestingly, the lowest aspect of importance reported was whether the child had friends or family already attending the centre. The results of the survey and interview data reflected the parents’ aspirations for their child and included the development of personal competencies of self-awareness, self-regulation, and motivation linking emotions to thoughts and actions (Gendron). The child’s experience in a centre was expected to develop and refine personal traits such as self-confidence, self-awareness, self-management, the ability to interact with others, and the involvement in educational activities to achieve learning goals. With these aspirations in mind, parents felt considerable pressure to choose the environment that would fit their child the best. During the interview stage of data collection, the term “taste” emerged. The term is commonly used in a food, fashion, or style context. In the education context, however, taste was conceptualised as the judgement of likes and dislikes regarding centre attributes. Gladwell writes that “snap judgements are, first of all, enormously quick: they rely on the thinnest slices of experience. But they are also unconscious” (50). The immediacy of determining one's taste refutes the neoliberal construction (Campbell, Proctor, Sherington) of the DMP as a rational decision-making process that systematically compares different options before making a decision. In the education context, taste can be reconceptualised as an alignment between a decision and inherent values and beliefs. A personal “backpack” of experiences, beliefs, values, ideas, and memories all play a part in forming a person’s taste related to their likes and dislikes. In turn, this effects the end decision made. Parents formulated an initial response to a centre linked to the identification of attributes that aligned with personal values, beliefs, expectations, and aspirations. The data analysis indicated that parents formulated their personal taste in centres very quickly after centres were visited. At that point, parents had a clear image of the preferred centre. Further information gathering was used to reinforce that view and confirm this “parental taste.” How Does Parental Taste about a Centre Influence the Decision-Making Process? All parents used a process of decision-making to some degree. As already stated, it was usually the mother who gathered information to inform the final decision, but in two of the 78 cases it was the father who investigated and decided on the childcare centre in which to enrol. All parents used some form of process to guide their decision-making. A heavily planned process sees the parent gather information over a period of time and included participating in centre tours, drive-by viewings, talking with others, web-based searches, and, checking locations in the phone book. Surprisingly, centre advertising was the least used and least effective method of attracting parents, with only one person indicating that advertising had played a part in her DMP. This approach applied to a woman who had just moved to a new town and was not aware of the care options. This method may also be a reflection of the personality of the parent or it may reflect an understanding that there are differences between services in terms of their focus on education and care. A lightly planned process occurred when a relatively swift decision was made with minimal information gathering. It could have been the selection of the closest and most convenient centre, or the one that parents had heard people talk about. These parents were happy to go to the centre and add their name to the waiting list or enrol straight away. Generally, the impression was that all services provide the same education and care. Parents appeared to use different criteria when considering a centre for their child. Aspects here included the physical environment, size of rooms, aesthetic appeal, clean buildings, tidy surrounds, and a homely feel. Other aspects that affected this parental taste included the location of the centre, the availability of places for the child, and the interest the staff showed in parent and child. The interviews revealed that parents placed an importance on emotions when they decided if a centre suited their tastes that in turn affected their DMP. The “vibe,” the atmosphere, and how the staff made the parents feel were the most important aspects of this process. The centre’s reputation was also central to decision making. What Constructs Underpin the Decision? Parental choice decisions can appear to be rational, but are usually emotionally connected to parental aspirations and values. In this way, parental choice and prior parental decision making processes reflect the bounded rationality described by Kahneman, and are based on factors relevant to the individual as supported by Ariely and Lindstrom. Ariely states that choice and the decision making process are emotionally driven and may be irrational-rational decisions. Gladwell supports this notion in that “the task of making sense of ourselves and our behaviour requires that we acknowledge there can be as much value in the blink of an eye as in months of rational analysis” (17). Reay’s research into social, cultural, emotional, and human capital to explain human behaviour was built upon to develop five constructs for decision making in this research. The R.O.P.E.S. constructs are domains that tie together to categorise the interaction of emotional connections that underpin the decision making process based on the parental taste in centres. The constructs emerged from the analysis of the data collected in the three phase approach. They were based on the responses from parents related to both their needs and their child’s needs in terms of having a valuable and happy experience at a centre. The R.O.P.E.S. constructs were key elements in the formation of parental taste in centres and eventual enrolment. The Reputational construct (R) included word of mouth, from friends, the cleaner, other staff from either the focus or another centre, and may or may not have aligned with parental taste and influenced the decision. Other constructs (O) included the location and convenience of the centre, and availability of spaces. Cost was not seen as an issue with the subsidies making each centre similar in fee structure. The Physical construct (P) included the facilities available such as the indoor and outdoor play space, whether these are natural or artificial environments, and the play equipment available. The Social construct (S) included social interactions—sharing, making friends, and building networks. It was found that the Emotional construct (E) was central to the process. It underpinned all the other constructs and was determined by the emotions that were elicited when the parent had the first and subsequent contact with the centre staff. This construct is pivotal in parental taste and decision making. Parents indicated that some centres did not have an abundance of resources but “the lady was really nice” (interview response) and the parent thought that her child would be cared for in that environment. Comments such as “the lady was really friendly and made us feel part of the place even though we were just looking around” (interview response) added to the emotional connection and construct for the DMP. The emotional connection with staff and the willingness of the director to take the time to show the parent the whole centre was a common comment from parents. Parents indicated that if they felt comfortable, and the atmosphere was warm and homelike, then they knew that their child would too. One centre particularly supported parental taste in a homely environment and had lounges, floor rugs, lamps for lighting, and aromatherapy oil burning that contributed to a home-like feel that appealed to parents and children. The professionalism of the staff who displayed an interest in the children, had interesting activities in their room, and were polite and courteous also added to the emotional construct. Staff speaking to the parent and child, rather than just the parent, was also valued. Interestingly, parents did not comment on the qualifications held by staff, indicating that parents assumed that to be employed staff must hold the required qualifications. Is There a Further Application of Taste in Decision Making? The third phase of data collection was related to additional questions being asked of the interviewee that required reflection of the DMP used when choosing a centre for their child to attend. Parents were asked to review the process and comment on any changes that they would make if they were in the same position again. The majority of parents said that they were content with their taste in centres and the subsequent decision made. A quarter of the parents indicated that they would make minor changes to their process. A common comment made was that the process used was indicative of the parent’s personality. A self confessed “worrier” enrolling her first child gathered a great deal of information and visited many centres to enable the most informed decision to be made. In contrast, a more relaxed parent enrolling a second or third child made a quicker decision after visiting or phoning one or two centres. Although parents considered their decision to be rationally considered, the impact of parental taste upon visiting the centre and speaking to staff was a strong indicator of the level of satisfaction. Taste was a precursor to the decision. When asked if the same process would be used if choosing a different service, such as an accountant, parents indicated that a similar process would be used, but perhaps not as in depth. The reasoning here was that parents were aware that the decision of selecting a centre would impact on their child and ultimately themselves in an emotional way. The parent indicated that if they spent time visiting centres and it appealed to their taste then the child would like it too. In turn this made the whole process of attending a centre less stressful and emotional. Parents clarified that not as much personal information gathering would occur if searching for an accountant. The focus would be centred on the accountant’s professional ability. Other instances were offered, such as purchasing a car, or selecting a house, dentist, or a babysitter. All parents suggested that additional information would be collected if their child of family would be directly impacted by the decision. Advertising of services or businesses through various multimedia approaches appeared not to rate highly when parents were in the process of decision making. Television, radio, print, Internet, and social networks were identified as possible modes of communication available for consideration by parents. The generational culture was evident in the responses from different parent age groups. The younger parents indicated that social media, Internet, and print may be used to ascertain the benefits of different services and to access information about the reputation of centres. In comparison, the older parents preferred word-of-mouth recommendations. Neither television nor radio was seen as media approaches that would attract clientele. Conclusion In the education context, the concept of parental taste can be seen to be an integral component to the decision making process. In this case, the attributes of an educational facility align to an individual’s personal “backpack” and form a like or a dislike, known as parental taste. The implications for the Directors of Early Childhood Education and Care Centres indicate that parental taste plays a role in a child’s enrolment into a centre. Parental taste is determined by the attributes of the centre that are aligned to the R.O.P.E.S. constructs with the emotional element as the key component. A less rigorous DMP is used when a generic service is required. Media and cultural ways of looking at our society interpret how important decisions are made. A general assumption is that major decisions are made in a calm, considered and rational manner. This is a neoliberal view and is not supported by the research presented in this article. References Ariely, Dan. Predictably Irrational: The Hidden Forces That Shape Our Decisions. London: Harper, 2009. Australian Children’s Education, Care and Quality Authority (ACECQA). n.d. 14 Jan. 2014. ‹http://www.acecqa.gov.au›. Campbell, Craig, Helen Proctor, and Geoffrey Sherington. School Choice: How Parents Negotiate The New School Market In Australia. Crows Nest, N.S.W.: Allen and Unwin, 2009. Cresswell, John,W. Research Design. Qualitative, Quantitative and Mixed Methods Approaches (2nd ed.). Los Angeles: Sage, 2003. Department of Education. 11 Oct. 2013. 14 Jan. 2014. ‹http://education.gov.au/national-quality-framework-early-childhood-education-and-care›. Department of Employment, Education and Workplace Relations (DEEWR). Education Reforms. Canberra, ACT: Australian Government Publishing Service, 2009. Gendron, Benedicte. “Why Emotional Capital Matters in Education and in Labour?: Toward an Optimal Exploitation of Human Capital and Knowledge Mangement.” Les Cahiers de la Maison des Sciences Economiques 113 (2004): 1–37. Glaswell, Malcolm. “Blink: The power of thinking without thinking.” Harmondsworth, UK: Penguin, 2005. Kahneman, Daniel. Thinking, Fast and Slow. New York: Farrar, Strauss & Giroux, 2011. Lindstrom, Martin. Buy-ology: How Everything We Believe About Why We Buy is Wrong. Great London: Random House Business Books, 2009. Melbourne Declaration on Educational Goals for Young Australians. 14 Jan. 2014. ‹http://www.mceecdya.edu.au/mceecdya/melbourne_declaration,25979.html›. National Quality Framework. 14 Jan. 2014. ‹http://www.acecqa.gov.au. Reay, Diane. A Useful Extension of Bourdieu’s Conceptual Framework?: Emotional Capital as a Way of Understanding Mothers’ Involvement in their Children’s Education? Oxford: Blackwell Publishers, 2000.

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. Lastly, while the Connected Students project focusses on impacts of affordability on digital inclusion, digital disadvantage intersects with many other forms of disadvantage. Thus, while our study focussed specifically on financial disadvantage, our call to be aware of who is and is not able to participate in Zoom-based research applies to digital exclusion more broadly, whatever its cause. Acknowledgements The Connected Students project was funded by Telstra. This research was also supported under the Australian Research Council's Discovery Early Career Researchers Award funding scheme (project number DE200100540). References Alam, Khorshed, and Sophia Imran. “The Digital Divide and Social Inclusion among Refugee Migrants: A Case in Regional Australia.” Information Technology & People 28.2 (2015): 344–65. Atkinson, John, Rosemary Black, and Allan Curtis. “Exploring the Digital Divide in an Australian Regional City: A Case Study of Albury”. Australian Geographer 39.4 (2008): 479–493. Australian Bureau of Statistics. “Census of Population and Housing: Socio-Economic Indexes for Areas (SEIFA), Australia, 2016.” 2016. <https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2033.0.55.001~2016~Main%20Features~SOCIO-ECONOMIC%20INDEXES%20FOR%20AREAS%20(SEIFA)%202016~1>. ———. “Index of Relative Socio-Economic Advantage and Disadvantage (IRSAD).” 2016. <https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2033.0.55.001~2016~Main%20Features~IRSAD~20>. Australian Council of Social Service. “The Future of Parents Next: Submission to Senate Community Affairs Committee.” 8 Feb. 2019. <http://web.archive.org/web/20200612014954/https://www.acoss.org.au/wp-content/uploads/2019/02/ACOSS-submission-into-Parents-Next_FINAL.pdf>. Beer, David. “The Social Power of Algorithms.” Information, Communication & Society 20.1 (2017): 1–13. Blanchard, Michelle, et al. “Rethinking the Digital Divide: Findings from a Study of Marginalised Young People’s Information Communication Technology (ICT) Use.” Youth Studies Australia 27.4 (2008): 35–42. Cater, Janet. “Skype: A Cost Effective Method for Qualitative Research.” Rehabilitation Counselors and Educators Journal 4.2 (2011): 10-17. Chen, Jesse. “Breaking Down Barriers to Digital Government: How Can We Enable Vulnerable Consumers to Have Equal Participation in Digital Government?” Sydney: Australian Communications Consumer Action Network, 2017. <http://web.archive.org/web/20200612015130/https://accan.org.au/Breaking%20Down%20Barriers%20to%20Digital%20Government.pdf>. Commonwealth Ombudsman. “Centrelink’s Automated Debt Raising and Recovery System: Implementation Report, Report No. 012019.” Commonwealth Ombudsman, 2019. <http://web.archive.org/web/20200612015307/https://www.ombudsman.gov.au/__data/assets/pdf_file/0025/98314/April-2019-Centrelinks-Automated-Debt-Raising-and-Recovery-System.pdf>. Deakin Hannah, and Kelly Wakefield. “Skype Interviewing: Reflections of Two PhD Researchers.” Qualitative Research 14.5 (2014): 603-616. Fujii, LeeAnn. Interviewing in Social Science Research: A Relational Approach. Routledge, 2018. Helsper, Ellen. “Digital Inclusion: An Analysis of Social Disadvantage and the Information Society.” London: Department for Communities and Local Government, 2008. Kennedy, Jenny, and Indigo Holcombe-James. “Connected Students Milestone Report 1: Project Commencement". Melbourne: RMIT, 2021. <https://apo.org.au/node/312817>. Kennedy, Jenny, et al. “Connected Students Milestone Report 2: Findings from First Round of Interviews". Melbourne: RMIT, 2021. <https://apo.org.au/node/312818>. Kennedy, Jenny, et al. Digital Domesticity: Media, Materiality, and Home Life. Oxford UP, 2020. Lasky, Julie. “How to Look Your Best on a Webcam.” New York Times, 25 Mar. 2020 <http://www.nytimes.com/2020/03/25/realestate/coronavirus-webcam-appearance.html>. Livingstone, Sonia, and Ellen Helsper. “Gradations in Digital Inclusion: Children, Young People and the Digital Divide.” New Media & Society 9.4 (2007): 671–696. Lobe, Bojana, David L. Morgan, and Kim A. Hoffman. “Qualitative Data Collection in an Era of Social Distancing.” International Journal of Qualitative Methods 19 (2020): 1–8. Lupton, Deborah. “Doing Fieldwork in a Pandemic (Crowd-Sourced Document).” 2020. <http://docs.google.com/document/d/1clGjGABB2h2qbduTgfqribHmog9B6P0NvMgVuiHZCl8/edit?ts=5e88ae0a#>. Murthy, Dhiraj. “Digital Ethnography: An Examination of the Use of New Technologies for Social Research”. Sociology 42.2 (2008): 837–855. ———. “Emergent Digital Ethnographic Methods for Social Research.” Handbook of Emergent Technologies in Social Research. Ed. Sharlene Nagy Hesse-Biber. Oxford UP, 2011. 158–179. Niven-Phillips, Lisa. “‘Virtual Meetings Aren’t Going Anywhere Soon’: How to Put Your Best Zoom Face Forward.” The Guardian, 27 Mar. 2021. <http://www.theguardian.com/fashion/2021/mar/27/virtual-meetings-arent-going-anywhere-soon-how-to-put-your-best-zoom-face-forward>. Ogle, Greg. “Telecommunications Expenditure in Australia: Fact Sheet.” Sydney: Australian Communications Consumer Action Network, 2017. <https://web.archive.org/web/20200612043803/https://accan.org.au/files/Reports/ACCAN_SACOSS%20Telecommunications%20Expenditure_web_v2.pdf>. Ogle, Greg, and Vanessa Musolino. “Connectivity Costs: Telecommunications Affordability for Low Income Australians.” Sydney: Australian Communications Consumer Action Network, 2016. <https://web.archive.org/web/20200612043944/https://accan.org.au/files/Reports/161011_Connectivity%20Costs_accessible-web.pdf>. Ragnedda, Massimo, and Maria Laura Ruiu. “Social Capital and the Three Levels of Digital Divide.” Theorizing Digital Divides. Eds. Massimo Ragnedda and Glenn Muschert. Routledge, 2017. 21–34. Rennie, Ellie, et al. “At Home on the Outstation: Barriers to Home Internet in Remote Indigenous Communities.” Telecommunications Policy 37.6 (2013): 583–93. Taylor, Linnet. “What Is Data Justice? The Case for Connecting Digital Rights and Freedoms Globally. Big Data & Society 4.2 (2017): 1–14. Thomas, Julian, et al. Measuring Australia’s Digital Divide: The Australian Digital Inclusion Index 2018. Melbourne: RMIT University, for Telstra, 2018. ———. Measuring Australia’s Digital Divide: The Australian Digital Inclusion Index 2019. Melbourne: RMIT University and Swinburne University of Technology, for Telstra, 2019. ———. Measuring Australia’s Digital Divide: The Australian Digital Inclusion Index 2020. Melbourne: RMIT University and Swinburne University of Technology, for Telstra, 2020. Zuboff, Shoshana. “Big Other: Surveillance Capitalism and the Prospects of an Information Civilization. Journal of Information Technology 30 (2015): 75–89.

It seems clear that people who are deaf ... struggle continually against the meanings that others impose on their experience, and the way that this separates them from others. They struggle for acknowledgement of the way they see their lives and wish to live them, and aspire to connection?with other people, to share and belong. (David Moorhead. Knowing Who I Am. 1995. 85.) Nga Tapuwae and Before I am deaf but, before that part of my life started, I was hearing and worked for many years as a librarian in New Zealand. My first job was in a public library located within a secondary school Nga Tapuwae Secondary College in South Auckland. Its placement was a 1970’s social experiment to see if a public library could work within the grounds of a community college (and the answer was no, it could not). The experience was a great introduction for me to the Maori and Polynesian cultures that I had not previously encountered. Until then, I was wary of both groups, and so it was a revelation to realise that although there were many social problems in the area including low literacy, many of the children and teenagers were bright, talented individuals. They simply did not connect to the Anglo-Saxon reading materials we offered. Years later, my interest in the social dynamics of literacy led to my enrolment in a post-graduate literacy degree in Melbourne. This action may have saved my life because at the end of this course, a minor ailment resulted in a visit to the university doctor who diagnosed me with the life-threatening medical condition, Neurofibromatosis Type 2 (NF 2). NF2 is a late onset genetic condition in which one’s body grows tumours, always on both hearing nerves, sometimes elsewhere as well. The tumours usually cause deafness and can cause death. I was told I needed to have my tumours removed and would probably become fully deaf as a result. This is how my life as I knew it changed direction and I started the long journey towards becoming deaf. Diagnosis and Change Predictably, once diagnosed, friends and colleagues rallied to comfort me. I was told things probably weren’t as bad as they sounded. Helen Keller was mentioned several times as an example of someone who had succeeded despite being deaf and blind. ‘Really,’ my friends asked, ‘how bad can it be? ‘Inside myself however, it couldn’t have been worse. A day later the enormity of it all hit me and I became inconsolable. A friend drove me back to the doctor and she did two things that were to change my life. She referred me to the University’s counselling services where, happily, I was counselled by Elizabeth Hastings who later went on to become Australia’s first Disability Services Commissioner. Secondly, the doctor organised for me to visit the HEAR Service at the Victorian Deaf Society (VDS). Again by happy accident, my friend and I stumbled into the ‘wrong building’ where I ended up meeting John Lovett, who was Deaf and the CEO there, via an interpreter. When I met John Lovett I was distraught but, unlike other people, he made no attempt to stop me crying. He simply listened carefully until I realised he understood what I was saying and stopped crying myself. He said my fears that I could end up alone and lonely were valid and he suggested the best thing I could do for myself was to join the ‘Deaf community’; a community. I had never heard of. He explained it was made up of people like him who used Australian sign language (Auslan) to communicate. He was so engaging and supportive that this plan sounded fine to me. By the time we finished talking and he walked me over to the HEAR Service, I was so in his thrall that I had enrolled for a Deaf awareness workshop, an Auslan class, and had plans to join the Deaf community. Had I stayed on and learned Auslan, my life may well have followed a different path, but this was not to be at that time. Becoming Hearing Impaired (HI) Across at the HEAR service, an alternate view of my potential future was put to me. Instead of moving away from everything familiar and joining the Deaf community, I could learn to lip-read and hopefully use it to stay in the workforce and amongst my hearing friends. I had a cousin and aunt who were late deafened; my cousin in particular was doing well communicating with lip-reading. I discussed this with friends and the idea of staying with the people I already knew sounded far less confronting than joining the Deaf community and so I chose this path. My surgeon was also optimistic. He was confident he could save some of my hearing. Suddenly learning Auslan seemed superfluous. I phoned John Lovett to explain, and his response was that I should do what suited me, but he asked me to remember one thing: that it was me who decided to leave the Deaf Community, not that the Deaf community had not wanted me. He told me that, if I changed my mind, I could always go back because the door to the Deaf community would always be open and he would be still be there. It would be a decade before I decided that I wanted to go back through that door, and around that time this great man passed away, but I never forgot my promise to remember our conversation. It, and a few other exchanges I had with him in the following years, stayed at the back of my mind, especially as my residual hearing sank over the years, and the prospect of total deafness hung over me. When I had the surgery, my surgeon’s optimism proved unfounded. He could not save any hearing on my left side and my facial and balance nerves were damaged as well. The hospital then decided not to operate again, and would only attempt to remove the second tumour if it grew and threatened my health again. Consequently, for close to a decade, my life was on hold in many ways. I feared deafness—for me it signalled that my life as I knew it would end and I would be isolated. Every hearing test was a tense time for me as I watched my remaining hearing decline in a slow, relentless downward path on the graph. It was like watching the tide go out knowing it was never going to come in as fully again. My thinking started to change too. Within a week of my diagnosis I experienced discrimination for the first time. A library school that had offered me a place in its post graduate librarianship course the following year made it clear that they no longer wanted me. In the end it did not matter as I was accepted at another institution but it was my first experience of being treated less favourably in the community and it was a shock. After the surgery my life settled down again. I found work in public libraries again, rekindled an old relationship and in 1994 had a baby boy. However, living with a hearing loss is hard work. Everything seemed tiring, especially lip-reading. My ears rejected my hearing aid and became itchy and inflamed. I became aware that my continual hearing problems were sometimes seen as a nuisance in work situations. Socialising lost a lot of its appeal so my social world also contracted. Around this time something else started happening. Outside work, people started expressing admiration for me—words like ‘role model’ and ‘inspiring’ started entering the conversation. Any other time I might have enjoyed it but for me, struggling to adapt to my new situation, it felt odd. The whole thing reminded me of being encouraged to be like Helen Keller; as if there is a right way to behave when one is deaf in which you are an inspiration, and a wrong way in which one is seen as being in need of a role model. I discussed this with Elizabeth Hastings who had helped me prepare mentally for the surgery and afterwards. I explained I felt vulnerable and needy in my new situation and she gave me some useful advice. She thought feeling needy was a good thing as realising one needs people keeps one humble. She observed that, after years of intellectualising, educated people sometimes started believing they could use intellectualisation as a way to avoid painful emotions such as sadness. This behaviour then cut them off from support and from understanding that none of us can do it alone. She believed that, in always having to ask for help, people with disabilities are kept aware of the simple truth that all people depend on others to survive. She said I could regard becoming deaf as a disability, or I could choose to regard it as a privilege. Over the years the truth of her words became increasingly more evident to me as I waded through all the jargon and intellectualisation that surrounds discussion of both deafness and the disability arena, compared to the often raw emotion expressed by those on the receiving end of it. At a personal level I have found that talking about emotions helps especially in the face of the ubiquitous ‘positive thinking’ brigade who would have us all believe that successful people do not feel negative emotions regardless of what is happening. The Lie Elizabeth had initially sympathised with my sadness about my impending deafness. One day however she asked why, having expressed positive sentiments both about deaf people and people with disabilities, I was saying I would probably be better off dead than deaf? Up until that conversation I was unaware of the contradictions between what I felt and what I was saying. I came to realise I was living a lie because I did not believe what I was telling myself; namely, that deaf people and people with disabilities are as good as other people. Far from believing this, what I really thought was that being deaf, or having a disability, did lessen one’s worth. It was an uncomfortable admission, particularly sharing it with someone sitting in a wheelchair, and especially as up until then I had always seen myself as a liberal thinker. Now, faced with the reality of becoming deaf, I had been hoist by my own petard, as I could not come to terms with the idea of myself as a deaf person. The Christian idea of looking after the ‘less fortunate’ was one I had been exposed to, but I had not realised the flip side of it, which is that the ‘less fortunate’ are also perceived as a ‘burden’ for those looking after them. It reminded me of my initial experiences years earlier at Nga Tapuwae when I came face to face with cultures I thought I had understood but did not. In both cases it was only when I got to know people that I began to question my own attitudes and assumptions and broadened my thinking. Unfortunately for deaf people, and people with disabilities, I have not been the only person lying to myself. These days it is not common for people to express their fears about deaf people or people with disabilities. People just press on without fully communicating or understanding the other person’s attitude or perspectives. When things then do not work out, these failures reinforce the misconceptions and these attitudes persist. I believe it is one of the main reasons why true community inclusion for deaf and people with disabilities is moving so slowly. Paying for access is another manifestation of this. Everyone is supportive of access in principle but there is continuous complaint about paying for things such as interpreting. The never-ending discussions between deaf people and the wealthy movie industry about providing more than token access to captioned cinema demonstrate that the inclusion lie is alive and well. Until it can be effectively addressed through genuine dialogue, deaf people, hard of hearing people and people with disabilities will always be largely relegated to life outside the mainstream. Collectively we will also continue to have to endure this double message that we are of equal value to the community while simultaneously being considered a financial burden if we try to access it in ways that are meaningful to us. Becoming Deaf In 2002 however all this thinking still lay ahead of me. I still had some hearing and was back living in New Zealand to be close to my family. My relationship had ended and I was a solo mother. My workplace had approved leave of absence, and so I still had my job to go back to in Melbourne if I wanted it. However, I suspected that I would soon need the second tumour removed because I was getting shooting pains down my face. When my fears were confirmed I could not decide whether to move back to Melbourne or let the job go, and risk having trouble finding one if I went back later. I initially chose to stay longer as my father was sick but eventually I decided Melbourne was where I wanted to be especially if I was deaf. I returned, found temporary employment, and right up to the second surgery I was able to work as I could make good use of the small amount of hearing I still had. I thought that I would still be able to cope when I was made fully deaf as a result of the surgery. It was, after all, only one notch down on the audiogram and I was already ‘profoundly deaf’ and still working. When I woke up after the surgery completely deaf, it felt anti-climactic. The world seemed exactly the same, just silent. At home where I was surrounded by my close family and friends everything initially seemed possible. However, when my family left, it was just my seven-year-old son and myself again, and on venturing back into the community, it quickly became clear to me that at some level my status had changed. Without any cues, I struggled to follow speech and few people wanted to write things down. Although my son was only seven, people communicated with him in preference to me. I felt as if we had changed roles: I was now the child and he was the adult. Worse was soon to follow when I tried to re-enter the workforce. When I had the surgery, the hospital had installed a gadget called an auditory brainstem implant, (ABI) which they said would help me hear. An ABI is similar to a cochlear implant but it is attached to the brainstem instead of the cochlear nerve. My cochlear nerve was removed. I hoped my ABI would enable me to hear enough to find work but, aside from clinical conditions in which there was no background noise and the staff knew how to assist, it did not work. My most humiliating moment with it came when it broke down mid job interview and I spent half the time left trying to get it going again in full view of the embarrassed interview panel, and the other half trying to maintain my composure whilst trying to lip-read the questions. The most crushing blow came from the library where I had happily worked for seven years at middle management level. This library was collaborating with another institution to set up a new library and they needed new staff. I hopefully applied for a job at the same level I had worked at prior to becoming deaf but was unsuccessful. When I asked for feedback, I was told that I was not seen as having the skills to work at that level. My lowest point came when I was refused a job unpacking boxes of books. I was told I did not have experience in this area even though, as any librarian will attest, unpacking boxes is part of any librarian’s work. When I could not find unskilled work, it occurred to me that possibly I would never work again. While this was unfolding, my young son and I went from being comfortable financially to impoverished. My ex-partner also decided he would now make childcare arrangements directly with my son as he was annoyed at being expected to write things down for me. My relationship with him, some family members, and my friends were all under strain at that time. I was lost. It also became clear that my son was not coping. Although he knew the rudiments of Auslan, it was not enough for us to communicate sufficiently. His behaviour at school deteriorated and one night he became so frustrated trying to talk to me that he started to pull out his own hair. I calmed him and asked him to write down for me what he was feeling and he wrote down ‘It is like you died. It is like I don’t have a Mum now’. It was now clear to me that although I still had my friends, nobody including myself knew what to do. I realised I had to find someone who could understand my situation and I knew now it had to be a Deaf person. Fortunately, by this stage I was back learning Auslan again at La Trobe University. The week after the conversation with my son, I told my Auslan teacher what had happened. To my relief she understood my situation immediately. She told me to bring my son to class, at no cost, and she would teach him herself. I did and my life started to turn around. My son took to Auslan with such speed and application that he was able to not only converse with her in one month but immediately started using Auslan with me at home to get the things he wanted. We were able to re-establish the mother/son relationship that we both needed. I was also able to help my son talk through and deal with all the changes that me becoming deaf had foisted upon him. He still uses Auslan to talk to me and supplements it using speech, copious finger spelling, notes and diagrams. More than anything else, this relationship has kept me anchored to my long-term goal of becoming a clear signer. Encouraged by my son’s success, I put all my energy into learning Auslan and enrolled in a full time TAFE Auslan course. I also joined a chat group called ‘Here to Hear’ (H2H). The perspectives in the group ranged from strongly oral to strongly Deaf but for me, trying to find a place to fit in any of it, it was invaluable. Almost daily I chatted with the group, asking questions and invariably someone responded. The group acted as a safety net and sounding board for me as I worked out the practicalities of living life deaf. The day of my fateful interview and the ABI humiliation, I came home so shaken that I used the Irish remedy of a couple of swigs of whisky, and then went online and posted an account of it all. I can still remember the collective indignation of the group and, as I read the responses, beginning to see the funny side of it . . . something I could not have done alone. I also made use of easy access to Deaf teachers at TAFE and used that to listen to them and ask advice on situations. I found out for example, that if I instructed my son to stand behind me when people in shops insisted on addressing him, they had no alternative but to talk to me; it was a good clear message to all concerned that my son was the child in this relationship. About this time, I discovered the Disability Discrimination Act (DDA) that Elizabeth Hastings had worked so hard on, filed my first DDA complaint, and received my first apology at the mediation session that followed. My personal life also improved, relationship by relationship as everyone adjusted. Slowly the ice melted in most of my relationships; some relationships faded and were replaced with new ones with signing people, and eventually hearing people again. My life moved forward. Through a member of ‘Here to Hear’, I was invited to apply for my first post deaf job—covering holiday leave at a Deaf sports organisation. I practically finger-spelt my way through the interview but not only did they offer me the job, they were delighted to have me. I was able to buy a few things with the money I earned, and suddenly it felt as if everything was possible again. This acceptance of me by Deaf people had a profound impact on me. I mixed with people more, and it was not too long before I was able to use my basic signing skills to use Auslan interpreters and re-enter the workplace. I have discovered over time that living in silence also has advantages—no more noisy parties or rubbish trucks clanging at dawn and in its place a vastly heightened visual awareness that I enjoy. Before I was deaf I thought it would be lonely in the silence but in fact many of life’s best moments—watching rain hit and then run down a window, swimming in the sea, cooking and being with good friends—do not rely upon sound at all; they feel the same way they always did. Sometimes I have felt somewhat of an outsider in the Deaf community. I have sometimes been taken aback by people’s abruptness but I have learned over time that being succinct is valued in Auslan, and some people like to come straight to the point. At crisis points, such as when I asked for help at the Victorian Deaf Society and my Auslan class, it has been a huge relief to talk to Deaf people and know immediately that they understand just from reading their eyes. Having access to an additional world of deaf people has made my life more enjoyable. I feel privileged to be associated with the Deaf community. I can recall a couple of Christmases ago making dinner for some signing friends and suddenly realising that, without noticing, everything had become alright in my world again. Everyone was signing really fast – something I still struggle with; but every now and then someone would stop and summarise so I felt included. It was really relaxed and simply felt like old times, just old times without the sound thrown in. Le Page and Tabouret-Keller, two ethnographers, have this to say about why people communicate the ways they do: The individual ... creates for himself the patterns of his linguistic behaviour so as to resemble those of the group or groups with which from time to time he wishes to be identified, or so as to be unlike those from whom he wishes to be distinguished ... . We see speech acts as acts of projection; the speaker is projecting his inner universe, implicitly with the invitation to others to share it ... he is seeking to reinforce his models of the world, and hopes for solidarity from those with whom he wishes to identify. (181) This quote neatly sums up why I choose to communicate the ways I do. I use Auslan and speech in different situations because I am connected to people in both groups and I want them in my life. I do not feel hugely different from anyone these days. If it is accepted that I have as much to contribute to the community as anyone else, becoming deaf has also meant for me that I expect to see other people treated well and accepted. For me that means contributing my time and thoughts, and advocating. It also means expecting a good level of access to interpreters, to some thought provoking captioned movies in English, and affordable assistive technologies so I can participate. I see this right to participate and engage in genuine dialogue with the rest of the community as central to the aspirations and identity of us all, regardless of who we are or where others think we belong. References Le Page, R.B., and Andree Tabouret-Keller. Acts of Identity: Creole-Based Approaches to Language and Ethnicity. London: Cambridge University Press, 1985. Moorhead, D. “Knowing Who I Am.” In S. Gregory, ed., Deaf Futures Revisited. Block 3, Unit 10, D251 Issues in Deafness. Open University, 1995.