Journal articles on the topic 'Mentally ill older people Care Australia'

This article outlines a Healthy Lifestyles Programme (HLP) for chronically mentally ill people in the South Coast Regional Health Authority in Australia, in the area of integrated mental health services. This programme has provided practical community-based experiences for chronically mentally ill people, focusing on functional deficits in daily living skills. Major reforms in service delivery in mental health have resulted in a move to community-based care. The 1994 Queensland Mental Health Plan set out specific objectives and strategies for the implementation of mental health service reform. One of the immediate priorities for Queensland is the establishing of mainstream integrated services to promote continuity of care across service components. The HLP reflects this priority in providing a community-based service in an integrated mental health setting, using the principles of community-based integration, family support, collaboration, rehabilitation and case management, as outlined in the community care model.

Objective: The objective of this study was to document the prevalence of risk factors for HIV/AIDS and hepatitis C among people with chronic mental illness treated in a community setting. Method: 234 patients attending four community mental health clinics in the North-western Health Care Network in Melbourne, Australia, completed an interviewer-administered questionnaire which covered demographics, risk behaviour and psychiatric diagnosis. Results: The sample was 58% male, and 79% of the sample had a primary diagnosis of schizophrenia. Forty-three per cent of mentally ill men and 51% of mentally ill women in the survey had been sexually active in the 12 months preceding the survey. One-fifth of mentally ill men and 57% of mentally ill women who had sex with casual partners never used condoms. People with mental illness were eight times more likely than the general population to have ever injected illicit drugs and the mentally ill had a lifetime prevalence of sharing needles of 7.4%. Conclusions: The prevalence of risk behaviours among the study group indicate that people with chronic mental illness should be regarded as a high-risk group for HIV/AIDS and hepatitis C. It is essential that adequate resources and strategies are targeted to the mentally ill as they are for other high-risk groups.

Objective: The objective of this study was to document the prevalence of risk factors for cardiovascular disease among people with chronic mental illness. Method: A cross-sectional survey was conducted of 234 outpatients attending a community mental health clinic in the North-western Health Care Network in Melbourne, Australia. Prevalence of smoking, alcohol consumption, body mass index, hypertension, salt intake, exercise and history of hypercholesterolemia was assessed. Results: Compared with a community sample, the mentally ill had a higher prevalence of smoking, overweight and obesity, lack of moderate exercise, harmful levels of alcohol consumption and salt intake. No differences were found on hypertension. Men, but not women, with mental illness were less likely to undertake cholesterol screening. Conclusions: Psychiatric outpatients have a high prevalence of cardiovascular risk factors which may account for the higher rate of cardiovascular mortality among the mentally ill. Further research is needed to trial and evaluate interventions to effectively modify risk factors in this vulnerable population.

Objective: The role of music therapy in psychiatric care in Australia is briefly traced from the early 1990s to the present. With the shift to community-based care, contemporary music therapy practice for the severely mentally ill is reappraised alongside the principles of the recovery model. Conclusions: Music therapy is a viable option within the creative arts therapies for enhancing quality of life in people with severe and enduring mental illness.

SummaryMental health services in the state of Victoria, Australia, have undergone enormous change over the past 15 years, with the closure of all stand-alone psychiatric hospitals and a shift of resources and services into the community. Although successful overall, various areas cause concern, including pressure on acute beds, a paucity of alternative residential options, and suboptimal integration of government and non-government agencies concerned with the care of people with mental illnesses. Certain groups, notably those with complex symptom sets such as substance use and mental illness, intellectual disability and forensic problems, remain poorly catered for by the system. Finally, community stigma and lack of work inclusion for mentally ill individuals are ongoing challenges.

Background: The finding by Lawrence, Holman and Jablensky (Duty to Care) that mortality among the mentally ill in Western Australia was 2.5 times that of the general population, seemingly, has great significance for public policy concerning the mentally ill. ‘Mortality’ could be a useful outcome measure for mental health services. Objectives: To replicate that study in the Australian Capital territory (ACT), comparing mortality rates in the mentally ill with those of the total population. Method: A list of all people who contacted the ACT mental health services between 1985 and 2000 was compiled. Using the national register of deaths (Australian Institute of Health and Welfare), persons known to the mental health services who died between 1990 and 2000 were identified and sex, date of birth, date of death, cause of death and place of death were noted. Using Australian Bureau of Statistics data for all deaths in the ACT, deaths in the total population and in the mentally ill population were tabulated for the period 1996–2000. With 1996 data as the base, using total population data from the ABS and mental health population data derived by amending ‘the list’ to remove duplications, pre1996 deaths and post1996 additions, mortality rates for the period 1996–2000 were compared. Results: The gender and age distribution of the mentally ill population and the total population, and of deaths in those populations, were very different. One third of all deaths in the mentally ill occurred outside of the ACT. Compared with the general population, mortality in the mentally ill (including deaths outside of the ACT) was only slightly excessive for ‘all causes’ and ischaemic heart disease but grossly excessive for ‘suicide’. Conclusions: This study did not confirm the excessive mortality rate in the mentally ill reported by Lawrence et al. except for suicide. Many methodological issues in using population studies to attempt to measure the size of the increase were identified. Differences in method between the ACT and WA studies probably explain the differences in results. Caution is urged in using the results of mortality studies as determinants of public policy or to evaluate services.

Background and Aims: In recent years, there has been a growing awareness of the need to protect human rights in psychiatry. Within the last years, considerable effort has been made to reduce restrictive measures in mental health settings. Reducing restrictive measures within mental health care has also moved increasingly into the focus of public debate. This study aims, for the first time in a Southeast Asian sample, to explore whether socio-demographic factors affect public attitudes toward restrictions on mentally ill people in Hanoi, Vietnam. Methods: A general population-based survey (self-report questionnaire) was carried out in 2013 in the greater Hanoi area. The survey sample ( N = 813) was recruited according to the latest published census (2009) and micro-census (2013) in Vietnam and Hanoi with regard to the socio-demographic factors gender, age, urbanity, household size and marital status. Multinomial logistic regressions for odds ratios with 95% confidence intervals were calculated to examine the influence of epidemiological variables, like gender and age, on the public attitude toward restrictions imposed on mentally ill people in Vietnam. Results: This study found, for the first time in a large Vietnamese sample, that gender and age were associated with public attitudes toward restrictions on mentally ill people. In detail, significantly fewer men endorsed compulsory admission to a hospital and abortion than Vietnamese women. In addition, endorsement of abortion was significantly higher in older people. Conclusion: The results offer some insight into roles of women in the Vietnamese society and might reflect the traditional gender expectations in Vietnamese families. Moreover, the results emphasize the need for supporting female psychiatric patients and their families within their communities and in the Vietnamese society.

People with mental illness often encounter stigma and discrimination. Mental illness-related stigma and discrimination represent the enormous obstacles that stand in the way of delivering mental health care. Little is known about stigma and discrimination toward mental illness in rural Sarawak. Thus, this study aimed to identify the stigma and discrimination towards mental illness among Sarawak’s rural community and the factors affecting them. A cross-sectional survey was carried out on 840 respondent adults aged 21 and above. A validated Community Attitude towards Mental Illness (CAMI) and Discrimination towards Mental Illness questionnaire was used for data collection. A Two-way Multiple Analysis of Covariance (Two-way MANCOVA) test was carried out to determine how much gender and education level influence stigma and discrimination towards mentally ill patients. Analysis showed that there was a statistically significant difference of standardised stigma and discrimination scores with education level (p<.001), but not with gender (p>.05). Age had a positive linear effect on both stigma and discrimination, whereas experience with mentally ill patients negatively affected both stigma and discrimination. Individuals with a lower level of education, older in age, and lesser experience in dealing with the mentally ill would have a higher level of stigma and discrimination towards mental illness. Thus, targeted and practical strategies need to be organised and implemented to combat mental illness-related stigma and discrimination.

ABSTRACTBackground: Mental capacity has been little studied among older general hospital inpatients.Methods: A retrospective analysis was undertaken of routinely collected data (age, gender, ethnicity, admission diagnosis, psychiatric diagnosis, Mini-mental State Examination score, whether capacity was assessed, the outcome of that assessment, and discharge destination) on referrals to a liaison psychiatry service for older people (2003–2006) from medical and surgical teams at a large London teaching hospital.Results: 1267 patients were referred to the service, of whom 379 (30%) were assessed for capacity. The most common mental capacity issues were placement (303 assessed of whom 54% lacked capacity), treatment (86 assessed, 59% lacking capacity) and finances (70 assessed, 79% lacking capacity). Cognitive impairment, dementia and delirium, rather than mental disorders were associated with incapacity. Those assessed and deemed to lack capacity for placement decisions were twice as likely to be placed in a care home, and four times as likely to be placed in an elderly mentally ill (EMI) facility, independent of dementia diagnosis and cognitive functioning.Conclusion: Referrals to a liaison psychiatry service for older people for assessment of mental capacity are common. The main mental capacity issues in older people were those linked to discharge planning. The relatively high proportion of those found to have capacity when capacity had been queried by referring clinicians attests to the important role of specialist liaison teams, particularly in complex cases, in protecting the autonomy of vulnerable older people, and avoiding institutionalization.

ABSTRACTBackground: As ageing is a personal experience, an attitude to ageing questionnaire is essential for capturing the most realistic appraisal of this important stage of life. Our aim was to study the psychometric properties of the Attitudes to Ageing Questionnaire (AAQ) in a sample of Spanish older people.Methods: A total of 242 participants aged 60 years and older were recruited from community centers, primary care centers, and family associations for the mentally ill and dementia. In addition to the AAQ, participants provided information on demographics, self-perception of health, comorbidity, health status (SF-12), depressive symptoms (GDS-30), and quality of life (WHOQOL-BREF and WHOQOL-OLD). Analysis was performed using standard psychometric techniques with SPSS v15.0.Results: No floor and ceiling effects were found, and missing data were low. The internal consistency measured by Cronbach's alpha for AAQ subscales were 0.59, 0.70, and 0.73. Exploratory Factor Analysis produced a three-factors solution accounting for 34% of the variance. A priori expected associations were found between some AAQ subscales with WHOQOL-BREF domains, with WHOQOL-OLD, SF-12, and the GDS-30 indicating good construct validity. In general, AAQ subscales differentiated between participants with lower and higher levels of education, and between a priori defined groups of older people (non-depressed vs. depressed; those with higher vs. lower physical comorbidities, and non-carers vs. carers).Conclusions: The Spanish version of the AAQ questionnaire showed acceptable psychometric properties in a convenience sample of Spanish older people. It is a useful measure of attitude for use with older people in social and clinical services.

Aims: The risk of mental illness and mental health problems is known to increase with aging, there is a continuing need for research and information about the daily life and care needs of elderly people with mental illness. The aim of this study was to examine the real-life experience of elderly outpatients with mental illnesses in Taiwan communities through in-depth interviews.Methods: A qualitative study involving semi-structured interviews of mentally ill elderly patients was conducted in 15 participants (3 men and 12 women, mean age = 74.67 years, SD = 10.04 years).Results: The willpower to survive and cope with aging and mental health problems was identified as the core category of the life experiences in the older adults in this study. The struggle with the stress of aging and mental health problems was categorized in life-experience terms as ‘bear the bitterness of life,’ ‘adhere to psychiatric treatment and use resources to cope with life’s stress,’ ‘maintain the willpower to survive’. Results of this study shown that although elderly patients in community have had many stressful life experiences and problems with mental illness, they will continue to show strength to coping with the problems of aging and mental illnesses.Conclusions: The elderly mental illness patients could coping with their problems, and maintain an active lifestyle, accept the reality and arrange life, and connect with the community. Therefore, health professionals should help elderly people find new strategies to maintain their mental health and to function in their communities.

Court diversion schemes have been running for a decade in New Zealand and are increasing in number in Australia. This paper aims to give an international and historical context to these developments, by reference to psychiatric initiatives at courts in the US and in England and Wales. From a review of the specialist literature, an account is given of three forms of psychiatric intervention in courts over the last 90 years: court psychiatric clinics and mental health courts in the US, and court diversion schemes in England and Wales. High levels of psychiatric morbidity among prisoners, coupled with a continuing increase in prisoner numbers, demonstrate the need for systems for dealing with mentally ill people who come before the courts. Court diversion in England and Wales developed as part of a system where the mentally ill who are found guilty are sent to hospital in lieu of any other sentence. Its focus is on a form of psychiatric triage, and its ethos is the health of the patient. Court psychiatric clinics in the US grew up as an alternative to assessment in prison. Their focus has been on full psychiatric evaluation in an insanity and incompetence jurisdiction. The ethos has been that of serving the court. Mental health courts are heavily influenced by ideas of therapeutic jurisprudence, and their emphasis has been on a judge holding minor offenders in community care through the threat of judicial sanction. Experience in England and Wales has shown that court diversion can be a powerful and effective intervention. In order for it to function properly, those running court schemes need direct admission rights to psychiatric beds, both open and locked. Court diversion schemes are best as part of a spectrum of services to police stations, courts and prisons, which involved both general and forensic psychiatrists.

Objective This paper reports on the experiences and perspectives of community members in relation to advance healthcare directives and enduring power of attorney, including the factors that encourage or discourage engagement in advance care planning (ACP). Methods A qualitative methodology was used involving 26 in-depth telephone interviews with community members (mean age 66 years). The aims of the interview question were to gain an understanding of: (1) motivations for engaging in ACP; (2) barriers that prevent people from engaging in ACP; and (3) suggestions for promoting ACP. Results The findings suggest that: (1) community members lack knowledge about ACP; (2) forms appear inaccessible and complex; (3) community members avoid ACP due to fear, mistrust and concerns over control; and (4) there are misperceptions regarding the relevance of ACP based on age and health. Conclusions There is unnecessary fear, avoidance and mistrust around ACP activities, largely resulting from misinformation. There is an undoubted need for greater education and support to be offered to individuals and their families regarding ACP, its benefits and its limitations. What is known about the topic? There is a lack of awareness about ACP in Australia, which is compounded by issues in the accessibility of ACP information, forms and support in completing the often complex documentation. Further, studies have indicated health practitioners tend to avoid assisting patients with ACP decision making and formalisation of their wishes for health care should they lose testamentary capacity. What does this paper add? This paper contributes further understanding of the experiences and perceptions of people, particularly older Australians, in relation to ACP, including the motivating and discouraging factors for people in the uptake of advance healthcare directives and enduring power of attorney. People felt discomfort and mistrust about ACP, and lacked understanding of its relevance regardless of age or health status. Those who had engaged in ACP, prompted by family members or experiences in, or witnessing, ill health, felt a sense of security in having formalised their wishes. What are the implications for practitioners? It is now clear that people require improved provision of information and support around ACP-related activities. This support may best be offered by practitioners such as nurses and social workers who are knowledgeable regarding ACP and skilled in counselling. Without discussion of death and dying, and the role of ACP, people will continue to feel a mistrust and avoidance towards formalising their healthcare wishes in advance.

ObjectivesTo estimate the prevalence of emotional, physical and sexual childhood abuse, and symptoms of post-traumatic stress disorder (PTSD) and to examine the association between childhood abuse and adult mental health problems, including mental distress and PTSD symptoms.DesignA community-based cross-sectional study was conducted. Childhood abuse was assessed with the NorVold Abuse Questionnaire, and mental distress and symptoms of PTSD were measured using the Hopkins Symptom Checklist 10 and the Impact of Event Scale—Revised, respectively. The Wald test and multiple linear regression analysis were applied for testing differences between proportions and the association between childhood abuse and adult mental health outcomes, respectively.SettingUrban and rural areas of the Yangon Region, Myanmar.ParticipantsA total of 2377 men and women aged 18–49 years were included. Institutionalised people, monks, nuns and individuals deemed too ill physically and/or mentally to participate were excluded.ResultsOverall, 21.1% (95% CI 18.8 to 23.6) reported any form of childhood abuse, 10.4% (95% CI 8.9 to 12.4) physical abuse, 10.4% (95% CI 8.8 to 12.2) emotional abuse and 7.3% (95% CI 5.7 to 9.3) sexual abuse. Childhood abuse was more common in women (29.8%) than in men (12.4%). The prevalence of PTSD symptoms in the total sample was 6.6%. After adjusting for confounding variables, positive associations were found between childhood abuse with adult mental distress and PTSD symptoms among women and older men.ConclusionsChildhood abuse is prevalent among both men and women in the Yangon Region of Myanmar and associated with adult mental health problems. Approximately 7% of people report PTSD symptoms. It should prompt local health professionals and policy makers to establish prevention programmes to eliminate violence against children and to organise services for victims of childhood abuse. Care should be taken in generalising findings for less populated areas.

OBJECTIVES/SPECIFIC AIMS: Stigma has been recognized as a major impediment to accessing mental health care among Vietnamese and Asian Americans (Leong and Lau, 2001; Sadavoy et al., 2004; Wynaden et al., 2005; Fong and Tsuang, 2007). The underutilization of mental health care, and disparities in both access and outcomes have been attributed to a large extent to stigma and cultural characteristics of this population (Wynaden et al., 2005; Jang et al., 2009; Leung et al., 2010; Spencer et al., 2010; Jimenez et al., 2013; Augsberger et al., 2015). People with neurotic or behavioral disorders may be considered “bad” as many Vietnamese people believe it is a consequence of one’s improper behavior in a previous life, for which the person is now being punished (Nguyen, 2003). Mental disorders can also been seen as a sign of weakness, which contributes to ambivalence and avoidance of help-seeking (Fong and Tsuang, 2007). Equally important is the need to protect family reputation; having emotional problems often implies that the person has “bad blood” or is being punished for the sins of his/her ancestors (Herrick and Brown, 1998; Leong and Lau, 2001), which disgraces the entire family (Wynaden et al., 2005). In these cases, public stigma (as opposed to internal stigma) is the primary reason for delays in seeking help (Leong and Lau, 2001). Other research has also highlighted the influences of culture on how a disorder may be labeled in different settings, although the presentation of symptoms might be identical (see Angel and Thoits, 1987). In Vietnamese culture, mental disorders are often labeled điên (literally translated as “madness”). A điên person and his or her family are often severely disgraced; consequently the individuals and their family become reluctant to disclose and seek help for mental health problems for fear of rejection (Sadavoy et al., 2004). Despite the critical role of stigma in accessing mental health care, there has been little work in trying to understand how stigmatizing attitudes towards mental illness among Vietnamese Americans manifest themselves and the influences of acculturation on these attitudes. Some previous work indicated a significant level of mental illness stigma among Vietnamese Americans, and experiences of living in the United States might interact with the way stigma manifests among this population (Do et al., 2014). Stigma is a complex construct that warrants a deeper and more nuanced understanding (Castro et al., 2005). Much of the development of stigma-related concepts was based on the classic work by Goffman (1963); he defined stigma as a process by which an individual internalizes stigmatizing characteristics and develops fears and anxiety about being treated differently from others. Public stigma (defined by Corrigan, 2004) includes the general public’s negative beliefs about specific groups, in this case individuals and families with mental illness concerns, that contribute to discrimination. Public stigma toward mental illness acts not only as a major barrier to care, but can also exacerbate anxiety, depression, and adherence to treatment (Link et al., 1999; Sirey et al., 2001; Britt et al., 2008; Keyes et al., 2010). Link and Phelan (2001) conceptualized public stigma through four major components. The first component, labeling, occurs when people distinguish and label human differences that are socially relevant, for example, skin color. In the second component, stereotyping, cultural beliefs link the labeled persons to undesirable characteristics either in the mind or the body of such persons, for example people who are mentally ill are violent. The third component is separating “us” (the normal people) from “them” (the mentally ill) by the public. Finally, labeled persons experience status loss and discrimination, where they are devalued, rejected and excluded. Link and Phelan (2001) emphasized that stigmatization also depends on access to social, economic, and political power that allows these components to unfold. This study aims to answer the following research questions: (1) how does public stigma related to mental illness manifest among Vietnamese Americans? and (2) in what ways does acculturation influence stigma among this population? We investigate how the 4 components of stigma according to Link and Phelan (2001) operationalized and how they depend on the level of acculturation to the host society. Vietnamese Americans is the key ethnic minority group for this study for several reasons. Vietnamese immigration, which did not start in large numbers until the 1970s, has features that allow for a natural laboratory for comparisons of degree of acculturation. Previous research has shown significant intergenerational differences in the level of acculturation and mental health outcomes (e.g., Shapiro et al., 1999; Chung et al., 2000; Ying and Han, 2007). In this study, we used age group as a proxy indicator of acculturation, assuming that those who were born and raised in the United States (the 18–35 year olds) would be more Americanized than those who were born in Vietnam but spent a significant part of their younger years in the United States (the 36–55 year olds), and those who were born and grew up in Vietnam (the 56–75 year olds) would be most traditional Vietnamese. The language used in focus group discussions (FGDs) reflected some of the acculturation, where all FGDs with the youngest groups were done in English, and all FGDs with the oldest groups were done in Vietnamese. METHODS/STUDY POPULATION: Data were collected through a set of FGDs and key informant interviews (KIIs) with experts to explore the conceptualization and manifestation of mental illness public stigma among Vietnamese Americans in New Orleans. Six FGDs with a total of 51 participants were conducted. Participants were Vietnamese American men and women ages 18–75. Stratification was used to ensure representation in the following age/immigration pattern categories: (1) individuals age 56–75 who were born and grew up in Vietnam and immigrated to the United States after age 35; (2) individuals age 36–55 who were born in Vietnam but spent a significant part of their youth in the United States; and (3) individuals age 18–35 who were born and grew up in the United States. These groups likely represent different levels of acculturation, assuming that people who migrate at a younger age are more likely to assimilate to the host society than those who do at a later age. Separate FGDs were conducted with men and women. Eleven KIIS were conducted with 6 service providers and 5 community and religious leaders. In this analysis, we focused on mental illness public stigma from the FGD participants’ perspectives. FGDs were conducted in either English or Vietnamese, whichever participants felt more comfortable with, using semistructured interview guides. All interviews were audio recorded, transcribed and translated into English if conducted in Vietnamese. Data coding and analysis was done using NVivo version 11 (QSR International, 2015). The analysis process utilized a Consensual Qualitative Research (CQR) approach, a validated and well-established approach to collecting and analyzing qualitative data. CQR involves gathering textual data through semistructured interviews or focus groups, utilizing a data analysis process that fosters multiple perspectives, a consensus process to arrive at judgments about the meaning of data, an auditor to check the work of the research team, and the development of domains, core-ideas, and cross-analysis (Hill et al., 2005). The study was reviewed and approved by Tulane University’s Internal Review Board. RESULTS/ANTICIPATED RESULTS: Components of public stigma related to mental illness. The 4 components of public stigma manifest to different extents within the Vietnamese Americans in New Orleans. Labeling was among the strongest stigma components, while the evidence of the other components was mixed. Across groups of participants, Vietnamese Americans agreed that it was a common belief that people with mental disorders were “crazy,” “acting crazy,” or “madness.” “Not normal,” “sad,” and “depressed” were among other words used to describe the mentally ill. However, there were clear differences between younger and older Vietnamese on how they viewed these conditions. The youngest groups of participants tended to recognize the “craziness” and “madness” as a health condition that one would need to seek help for, whereas the oldest groups often stated that these conditions were short term and likely caused by family or economic problems, such as a divorce, or a bankruptcy. The middle-aged groups were somewhere in between. The evidence supporting the second component, stereotyping, was not strong among Vietnamese Americans. Most FGD participants agreed that although those with mental disorders may act differently, they were not distinguishable. In a few extreme cases, mentally ill individuals were described as petty thefts or being violent towards their family members. Similarly to the lack of strong evidence of stereotyping, there was also no evidence of the public separating the mentally ill (“them”) from “us”. It was nearly uniformly reported that they felt sympathetic to those with mental disorders and their family, and that they all recognized that they needed help, although the type of help was perceived differently across groups. The older participants often saw that emotional and financial support was needed to help individuals and families to pass through a temporary phase, whereas younger participants often reported that professional help was necessary. The last component, status loss and discrimination, had mixed evidence. While nearly no participants reported any explicit discriminatory behaviors observed and practiced towards individuals with mental disorders and their families, words like “discrimination” and “stigma” were used in all FGDs to describe direct social consequences of having a mental disorder. Social exclusion was common. Our older participants said: “They see less of you, when they see a flaw in you they don’t talk to you or care about you. That’s one thing the Vietnamese people are bad at, spreading false rumors and discrimination” (Older women FGD). One’s loss of status seemed certain if their or their loved one’s mental health status was disclosed. Shame, embarrassment, and being “frowned upon” were direct consequences of one’s mental health status disclosure and subsequently gossiped about. Anyone with mental disorders was certain to experience this, and virtually everyone in the community would reportedly do this to such a family. “You get frowned upon. In the Vietnamese culture, that’s [a family identified as one with mental health problems] the big no-no right there. When everybody frowns upon your family and your family name, that’s when it becomes a problem” (Young men FGD). This is tied directly to what our participants described as Vietnamese culture, where pride and family reputation were such a high priority that those with mental disorders needed to go to a great extent to protect—“We all know what saving face means” as reported by our young participants. Even among young participants, despite their awareness of mental illness and the need for professional help, the desire to avoid embarrassment and save face was so strong that one would think twice about seeking help. “No, you just don’t want to get embarrassed. I don’t want to go to the damn doctor and be like ‘Oh yeah, my brother got an issue. You can help him?’ Why would I do that? That’s embarrassing to myself…” (Young men FGD). Our middle-aged participants also reported: “If I go to that clinic [mental health or counseling clinic], I am hoping and praying that I won’t bump into somebody that I know from the community” (Middle-aged women FGD). Vietnamese people were also described as being very competitive among themselves, which led to the fact that if a family was known for having any problem, gossips would start and spread quickly wherever they go, and pretty soon, the family would be looked down by the entire community. “I think for Vietnamese people, they don’t help those that are in need. They know of your situation and laugh about it, see less of you, and distant themselves from you” (Older women FGD). Culture and mental illness stigma, much of the described stigma and discrimination expressed, and consequently the reluctance to seek help, was attributed to the lack of awareness of mental health and of mental health disorders. Many study participants across groups also emphasized a belief that Vietnamese Americans were often known for their perseverance and resilience, overcoming wars and natural disasters on their own. Mental disorders were reportedly seen as conditions that individuals and families needed to overcome on their own, rather than asking for help from outsiders. This aspect of Vietnamese culture is intertwined with the need to protect one’s family’s reputation, being passed on from one generation to the next, reinforcing the beliefs that help for mental disorders should come from within oneself and one’s family only. Consequently persons with mental health problems would be “Keeping it to themselves. Holding it in and believing in the power of their friends” (Middle-aged FGD) instead of seeking help. Another dimension of culture that was apparent from FGDs (as well as KIIs) was the mistrust in Western medicine. Not understanding how counseling or medicines work made one worry about approaching service providers or staying in treatment. The habit of Vietnamese people to only go see a doctor if they are sick with physical symptoms was also a hindrance to acknowledging mental illness and seeking care for it. Challenges, including the lack of vocabulary to express mental illness and symptoms, in the Vietnamese language, exaggerated the problem, even among those who had some understanding of mental disorders. It was said in the young men FGD that: “when you classify depression as an illness, no one wants to be sick,… if you call it an illness, no one wants to have that sort of illness, and it’s not an illness that you can physically see…” (Young men FGD). Another young man summarized so well the influence of culture on mental illness stigma: “Us Southeast Asian, like, from my parents specifically has Vietnam War refugees. I think the reason why they don’t talk about it is because it’s a barrier that they have to overcome themselves, right? As refugees, as people who have been through the war… [omitted]They don’t want to believe that they need help, and so the trauma that they carry when they give birth to us is carried on us as well. But due to the language barrier and also the, like, they say with the whole health care, in Vietnam I know that they don’t really believe in Western and Eurocentric medicine. So, from their understanding of how, like from their experience with colonization or French people, and how medicine works, they don’t believe in it” (Young men FGD). One characteristic of the Vietnamese culture that was also often mentioned by our FGD participants (as well as KIIs) was the lack of sharing and openness between generations, even within a family. Grandparents, parents, and children do not usually share and discuss each other’s problems. Parents and grandparents do not talk about problems because they need to appear strong and good in front of their children; children do not talk about problems because they are supposed to do well in all aspects, particularly in school. The competitiveness of Vietnamese and high expectations of younger generations again come into play here and create a vicious cycle. Young people are expected to do well in school, which put pressure on them and may result in mental health problems, yet, they cannot talk about it with their parents because they are not supposed to feel bad about school, and sharing is not encouraged. The Asian model minority myth and the expectations of parents that their children would do well in school and become doctors and lawyers were cited by many as a cause of mental health problems among young people. “Our parents are refugees, they had nothing and our parents want us to achieve this American Dream…. [omitted] It set expectations and images for us…. It was expected for all the Asians to be in the top 10, and for, like a little quick minute I thought I wasn’t going to make it, I was crying” (Yong men FGD). As a result, the mental health problems get worse. “If you’re feeling bad about something, you don’t feel like you can talk about it with anyone else, especially your family, because it is not something that is encouraged to be talked about anyway, so if you are feeling poorly and you don’t feel like you could talk to anybody, I think that just perpetuates the bad feelings” (Middle-aged women FGD). Acculturation and mental illness stigma Acculturation, the degree of assimilation to the host society, has changed some of the understanding of mental illness and stigmatizing attitudes. Differences across generations expressed in different FGDs indicated differences in perceptions towards mental illness that could be attributed to acculturation. For example, the young generation understood that mental illness was a health problem that was prevalent but less recognized in the Vietnamese community, whereas a prominent theme among the older participants was that mental illness was a temporary condition due to psychological stress, that it was a condition that only Caucasians had. Some of the components of public stigma related to mental illness seemed to vary between generations, for example the youngest participants were less likely to put a label on a person with mental health problems, or to stereotype them, compared to the oldest and middle-aged participants. This was attributed to their education, exposure to the media and information, and to them “being more Americanized.” However, there was no evidence that acculturation played an important role in changing the other components of public stigma, including stereotyping, separating, and status loss and discrimination. For example, the need to protect the family reputation was so important that our young participants shared: “If you damage their image, they will disown you before you damage that image” (Young men FGD). Young people, more likely to recognize mental health problems, were also more likely to share within the family and to seek help, but no more likely than their older counterparts to share outside of the family—“maybe you would go to counseling or go to therapy, but you wouldn’t tell people you’re doing that” (Young women FGD). The youngest participants in our study were facing a dilemma, in which they recognized mental health problems and the need for care, yet were still reluctant to seek care or talk about it publicly because of fears of damaging the family reputation and not living up to the parents’ expectations. Many young participants reported that it actually made it very difficult for them to navigate mental health issues between the 2 cultures, despite the awareness of the resources available. “I think it actually makes it harder. Only because you know to your parents and the culture, and your own people, it’s taboo, and it’s something that you don’t talk about. Just knowing that you have the resources to go seek it… You want advice from your family also, but you can’t connect the appointment to your family because you’re afraid to express that to your parents, you know? So I think that plays a big part, and knowing that you are up and coming, but you don’t want to do something to disappoint your family because they are so traditional” (Young men FGD). Some participants felt more comfortable talking about mental health problems, like depression, if it was their friend who experienced it and confided in them, but they would not necessarily felt open if it was their problem. Subtle cultural differences like this are likely overlooked by Western service providers. One older participant summarized it well “They [the young generation] are more Americanized. They are more open to other things [but] I think that mental health is still a barrier.” DISCUSSION/SIGNIFICANCE OF IMPACT: This study investigated how different components of public stigma related to mental illness manifest among Vietnamese Americans, a major ethnic group in the United States, and how acculturation may influence such stigma. The findings highlighted important components of public stigma, including labeling and status loss, but did not provide strong evidence of the other components within our study population. Strong cultural beliefs underlined the understanding of mental health and mental illness in general, and how people viewed people with mental illness. Several findings have been highlighted in previous studies with Asian immigrants elsewhere; for example, a study from the perspectives of health care providers in Canada found that the unfamiliarity with Western biomedicine and spiritual beliefs and practices of immigrant women interacted with social stigma in preventing immigrants from accessing care (O’Mahony and Donnelly, 2007). Fancher et al. (2010) reported similar findings regarding stigma, traditional beliefs about medicine, and culture among Vietnamese Americans. Acculturation played a role in changing stigmatizing attitudes as evidenced in intergenerational differences. However, being more Americanized did not equate to being more open, having less stigmatizing attitudes, or being more willing to seek care for mental health issues. Consistent with previous studies (Pedersen and Paves, 2014), we still found some level of stigma among young people aged 18–35, although some components were lessened with an increased level of acculturation. There was also a conflict among the younger generation, in which the need for mental health care was recognized but accessing care was no easier for them than for their parent and grandparent generations. The study’s findings are useful to adapt existing instruments to measure stigma to this population. The findings also have important program implications. One, they can be directly translated into basic supports for local primary and behavioral health care providers. Two, they can also be used to guide and inform the development and evaluation of an intervention and an additional study to validate the findings in other immigrant ethnic groups in the United States. Finally, based on results of the study, we can develop a conceptual framework that describes pathways through which social, cultural, and ecological factors can influence stigma and the ways in which stigma acts as a barrier to accessing mental health care among Vietnamese Americans. The guiding framework then can be validated and applied in future programs aimed to improve mental health care utilization among ethnic minorities.

Caregivers of older people with mental health problems encountered with minimal support and assistance in their caregiving responsibility. Despite all the positive and negative experiences faced by the caregivers, the family network, network of friends and some local informal networks supported their roles although there were contested beliefs between traditional, religious and modern perspectives. The article will be addressed the different help and support provided by the extended family, neighbourhood support, neighbours and friends’ network. Caregivers address the need for appropriate support and resources to help them in managing and providing ‘good quality care’ to their mentally ill family member.

Interest in voluntary assisted death (VAD) has been growing among researchers, policy makers and the public. This study aimed to explore older adults’ perspectives on VAD in Australia. Using purposive sampling, 15 adults ≥65 years participated in in-depth semi-structured interviews. Interpretative phenomenological analysis identified four themes: cultural reflections; beliefs and worldviews; health aspects; and fabric of life. Participants expressed a desire to have control over end-of-life options, challenged by religious beliefs. Participants expressed concern that VAD legislation could leave people vulnerable to coercion and saw a need for safeguards. Reasons for and against supporting and utilising VAD were discussed. Physical illness was seen a more compelling reason for VAD than mental ill-health. Finally, connections to life and other were discussed, and being able to do the things one loved were named aspects of what it meant to live a good life. Implications are discussed along with future research directions.

Abstract Background The concept of deinstitutionalization started in the 1960s in the US to describe closing down or reducing the number of beds in mental hospitals. The same process has been going on in many countries but with different names and in various forms. In Europe, countries like Italy prescribed by law an immediate ban on admitting patients to mental hospitals while in some other European countries psychiatric care was reorganized into a sectorized psychiatry characterized by open psychiatric care. This sectorization has not been studied to the same extent as the radical closures of mental hospitals, even though it entailed major changes in the organization of care. The deinstitutionalization in Sweden is connected to the sectorization of psychiatric care, a protracted process taking years to implement. Methods Older people, with their first admission to psychiatric care before or after the sectorization process, were followed using three different time metrics: (a) year of first entry into a mental hospital, (b) total years of institutionalization, and (c) changes resulting from aging. Data from surveys in 1996, 2001, 2006, and 2011 were used, together with National registers. Results Examination of date of first institutionalization and length of stay indicates a clear break in 1985, the year when the sectorization was completed in the studied municipality. The results show that the two groups, despite belonging to the same age group (birthyears 1910–1951, mean birthyear 1937), represented two different patient generations. The pre-sectorization group was institutionalized at an earlier age and accumulated more time in institutions than the post-sectorization group. Compared to the post-sectorization group, the pre-sectorization group were found to be disadvantaged in that their level of functioning was lower, and they had more unmet needs, even when diagnosis was taken into account. Conclusions Sectorization is an important divide which explains differences in two groups of the same age but with different institutional history: “modern” and “traditional” patient generations that received radically different types of care. The results indicate that the sectorization of psychiatric care might be as important as the Mental Health Care Reform of 1995, although a relatively quiet revolution.

Abstract Background Care assistant workers (CAWs) are a part of a new pattern of mental health care providers in China and play a significant role in bridging the human resource shortage. CAWs in China mainly include community cadres, community mental health staff, and community policemen. The mental health related knowledge and attitudes of CAWs could influence their mental health care delivery. This study aimed to assess mental health related knowledge and attitudes of CAWs in Guangzhou, China. Methods In November 2017, a study was conducted among 381 CAWs from four districts of Guangzhou, China. Participants were assessed using the Perceived Devaluation and Discrimination Scale (PDD), the Mental Health Knowledge Schedule (MAKS), and the Mental illness: Clinicians’ Attitudes (MICA) Scale. Data were analyzed by descriptive statistics, ANOVA, Bonferroni corrections and multivariable linear regression. Results The mean scores (standard deviation) of PDD, MAKS and MICA were 36.45 (6.54), 22.72 (2.56), and 51.67 (7.88), respectively. Univariate analyses showed that the older CAWs, community policemen and those who were less willing to deliver care to people with mental illness had significant higher MICA scores when compared with other staff (P < 0.001). Multivariable linear regression showed that after controlling for key variables, care willingness and PDD total score were positively associated with the MICA total score (all P < 0.05), while attitudes on additional items were significant negatively with the MICA total score (all P < 0.01). Conclusion These findings suggest negative attitudes towards people with mental disorders among CAWs are common, especially among older staff. Community policemen suggest that they applied stereotypes of “violent mentally ill” people to all people they deal with who have mental disorders. The results also indicate human rights are being paid some attention to now, but need to be further continually improved in the future. Strategies for improving such negative attitudes and reducing the perceived stigma and discrimination should be carried out towards particular staff groups in an anti-stigma programme in Guangzhou, China.

Background: Mental stigma represents a critical obstacle for delivering mental health care. Aims: To determine public stigma, knowledge & behaviors of the attendees of outpatient clinics towards People with Mental Illness (PWMI), King Abdulaziz University Hospital (KAUH), Jeddah, Saudi Arabia. Methods: A cross-sectional study was done in 2018. A sample of 600 attendees of outpatient clinics of KAUH were included. A standardized interviewing data collection sheet was used. It included three scales namely: the Community Attitudes towards the Mentally Ill (CAMI), Mental Health Knowledge Schedule (MAKS) & Reported and Intended Behavior Scale (RIBS). Authoritarian, socially restrictiveness, benevolent & Community Mental Health Ideology of CAMI sub-scales were calculated. Descriptive, inferential, and multiple linear regression analyses were applied. Results: About two-thirds of the participants agreed that mental illness causes lacking self-discipline & will power. Gender was significantly associated with all CAMI sub-scales (P < 0.01). An increasing level of knowledge about mental illness was associated with lower stigma towards PWMI (P< 0.001). After controlling confounders in regression analyses, gender and knowledge were significant predictors of all CAMI sub-scales. Concerning MAKS, about half of participants incorrectly identified stress & grief as types of mental illness. Regarding RIBS, living with (30.2%), and having a neighbor (28.8%) with mental illness were the commonest reported experiences. Conclusions: Negative attitudes towards PWMI still prevailed. Mental stigma was higher among males, older people, lower-educators, lower-income & those with poor mental knowledge. Participants had a moderate intention to accept PWMI. Anti-stigma intervention educational programs are required.

Prelude: 2020 in Words Each year the Australian National Dictionary Centre, based at the Australian National University (ANU), selects “a word or expression that has gained prominence in the Australian social landscape”. In 2020, “iso” took out first place, with “bubble” following close behind. On the Centre’s website, Senior Researcher Mark Gywnn explains that “iso” was selected not only for its flexibility, merrily combining with other words to create new compound words (for instance “being in iso”, doing “iso baking” and putting on “iso weight”), but also because it “stood out as a characteristically Aussie abbreviation” (Australian National Dictionary Centre). Alongside the flexibility of the word “iso” and its affinity with the Australian English tradition of producing and embracing diminutives, iso’s appeal might well be that it does not carry the associations that the word “bubble” has acquired in the time of COVID. While COVID-19 has put many of us in various forms of “iso”, the media imagery—and indeed experiences—of many older people living in residential aged care during COVID has shifted some of the associations of the word “bubble”, heightening its associations with fragility and adding vulnerability and helplessness into the mix. 2020 was not the first time “bubble” has appeared in the Australian word of the year list. In 2018 “Canberra bubble” took out the first spot. What interests us about bubble’s runner-up position behind “iso” in 2020’s word of the year is what this might also reveal about the way ideas of independence vs dependence, and youthfulness vs aged underlie and inflect new usages of these words. In the era of COVID-19, the buoyancy of “iso” is tied to its association with a particular kind of Aussie-youth-speak, while the sense of heaviness and negative resonances that now accompany the word bubble are tied to its associations with the experiences of those in aged care. In 2020 “bubble”—a word that has primarily been associated with children and the child-like (bubble baths, bubble tea)—took on new associations and overtones. As the pandemic unfolded, “bubble” also became intertwined with media depictions of and popular discourses around those in later life, many of whom experienced “iso” much more brutally than the easy-Aussie-speak of “iso” would convey. There is much less play—and a lot less mingling—in the Australian National Dictionary Centre description of new uses of the word “bubble”: “a district, region, or a group of people viewed as a closed system, isolating from other districts, regions, or groups as a public health measure to limit the spread of Covid-19”. There have been various kinds of “closed system[s]”, isolated groups and regions constructed in the management of the pandemic, but there is one group—and one kind of location—that has been “bubbled” in quite specific ways. While the sectioning off and isolating of older age people in the name of protecting their health has often been ineffectively—and in some places, disastrously—managed in terms of disease prevention, it has been very effective in reducing the rights and voices of those it acts in the name of. Speaking from Ireland but commenting on the situation in the UK and parts of Europe, Anne Fuchs and colleagues write that “the discursive homogenization and ‘frailing’ of the over 65s meant that people in this category were an object of public discourse rather than participants in the debate” (2). In many instances the “bubbling” of older people, particularly those in aged care residences, has served to both isolate and render largely voiceless the residents of these care homes. Although the global impact of COVID-19 on the aged has been significant, including across many affluent societies, it has been particularly disastrous in Australia. At the time of writing (1 January 2021), of the 909 COVID-related deaths in Australia to date, 693 have been of people aged 80 or over: in other words, more than 75% of COVID-related deaths in Australia have been of people over 80. According to the federal government’s records of COVID-19 deaths by age group and sex, 685 of these deaths have been of aged care residents. It is not surprising therefore that many speak of the heavy impact of COVID-19 on older people as a form of genocide. Public discourse and government policies and priorities around COVID-19 have thrown into relief and exacerbated some of the deeply troubling ways that older people, particularly those living in aged care residences, are not recognised or treated as “equal partners in our future” (Royal Commission into Aged Care 1). Both the management of and public discourse around COVID-19 have highlighted and escalated the forms of ageism, especially ageism around later life, that have become embedded in Australian culture. In late 2019 the Royal Commission into Aged Care Quality and Safety released its Interim Report, titled simply Neglect. In the Foreword, the commissioners write: the Australian community generally accepts that older people have earned the chance to enjoy their later years, after many decades of contribution and hard work. Yet the language of public discourse is not respectful towards older people. Rather, it is about burden, encumbrance, obligation and whether taxpayers can afford to pay for the dependence of older people. (Royal Commission into Aged Care 1) Written and released before the COVID-19 pandemic, the Interim Report highlighted the “fundamental fact that our aged care system essentially depersonalises older people” (Royal Commission into Aged Care 6) and identified many ways “the aged care system fails to meet the needs of our older, often very vulnerable, citizens” (Royal Commission into Aged Care 1). In 2020 we saw some of the effects of these failures in the often disastrous mismanagement of disease transmission prevention in many aged care residences in Australia. Equally troubling, the resulting deaths have at times been accompanied by a general acceptance of the loss of so many in later life to COVID-19. The fact that these deaths are often regarded as somehow more inevitable, or as less significant than the deaths of others, is an indication of how deeply “Australia has drifted into an ageist mindset that undervalues older people and limits their possibilities” (Royal Commission into Aged Care 1). It assumes that one’s later-life years are of less significance and value (to oneself, to the community) than one’s younger years. At various times in the pandemic, sizable parts of the global population have been variously asked, advised, or required by their governments to remain within their household or residential “bubble”. These COVID-related “bubbles” are more buoyant for some. Jackie Gulland has written a feminist analysis of the ways that the UK COVID-19 lockdown rules are premised on “neo-liberal assumptions about the family as autonomous and sufficient for the provision of reproductive labour” (330). In many places the requirement to stay within one’s “household bubble” both assumes that the home is safe for all, and that most care and dependency requirements are provided and received within a household. As Gulland’s essay demonstrates, the idea of the household bubble constructs an image or idea of who and what constitutes a household, and which relationships “count”. Drawing on critiques of neo-liberal and able-ist ideas about autonomy by feminist and disability scholars, Gulland “shows how the failure of policymakers to take account of interdependency has made lockdown more difficult for carers and those in receipt of care” (330). In this essay we look at some of the ways that the required and/or imagined COVID-19 bubbles for people in later life are thought of differently to the COVID-19 bubbles that younger, and mixed age, households are imagined as forming. This is particularly the case, we argue, for those in aged care residences. Younger and mixed age COVID bubbles often include extended or linked households (as we will discuss below in relation to the idea of the compassionate bubble) and function as a bubble that can link and enclose. In contrast, COVID bubbles in and for aged care and those in later life, work to isolate and separate. They function as bubbles that close off and shut out, as if placing the older person and older people behind glass (in some cases, quite literally). Likewise, while the COVID-19 bubbles for the “general” population (a category from which those in later life are often excluded) are regarded as temporary structures that will in time be dissolved to re-allow social movement and intermingling, the later life and aged care COVID-19 bubble is imagined very differently. This is because it is overlaid upon a pre-existing conception of later life—and in particular the fourth age—as itself a kind of bubbled existence, a fragile state held somewhat separate and apart from the general population and moving inexorably toward death—a bubble that pops. Bubbling the Fourth Age The idea that later life can be divided into different stages and ages has a long history, although the shape, meaning and valuing of different ages in later life is historically specific. Back in the late 1980s the Cambridge historian Peter Laslett proposed that rather than falling into three main stages—childhood, adulthood and old age—there are in fact four stages and that “later life can be divided into a ‘third age’ and a ‘fourth age’” (Gilleard and Higgs, “The Fourth Age” 368). Laslett’s distinction between a third age (active and characterised by personal fulfillment) and a fourth age (for Laslett an age of infirmity) has become increasingly significant in both age studies and in the provision and imagining of aged care. While the third age is increasingly depicted as something that, when managed “successfully”, can expand and fill with rich experiences and rewards (assuming one has the economic and social privilege and mobility to embrace these rich offerings—see Katz and McHugh cited in Zeilig, “Critical Use of Narrative”), the fourth age, on the other hand, is associated with frailty, increased dependence, vulnerability, precarity (see Lloyd; Gilleard and Higgs; and Morganroth Gullette on the fourth age). Of course, experiences of vulnerability, dependency and precarity run throughout the life course and cannot be reduced to chronological age. However, the distinction between a third and fourth age tends to assume that once one “leaves” the third age, it is a one-way path to “the three ‘Ds’: decrepitude, dependence, and death” (Laslett). The fourth age becomes associated with those aspects of ageing that are culturally rejected and pushed aside—in particular physical dependence which, as in much able-ist thinking, is rendered abject. As Morganroth Gullette has argued, a “savage contradiction” underlies and fuels this distinction, as “fantasies of the longevity bonanza proliferate alongside growing terrors of living too long” and becoming a “‘burden’” (21). In other words, those aspects of ageing—indeed those aspects of being human—that are seen as undesirable and/or abject are associated with the fourth age and imagined as somehow exclusive to it: they are placed elsewhere, contained in a fourth age “bubble”. The understanding of the fourth age as a kind of bubble is evident in and enabled by various kinds of cultural representations and institutional discourses around later life, including the kind of language used (particularly language connoting precarity and fragility and liminality) and recurrent media imagery in which people in their “fourth age” are depicted as mentally and physically out of reach (for instance isolated behind glass). Legislation around the movements of residents, visitors, and staff in aged care residence does not simply create “protective” bubbles around aged care residences but also constructs and imagines these residences and their inhabitants as “bubbled”, removed, and voiceless. Vulnerability, ephemerality, precarity and decline have become increasingly significant in representations of and discourses around ageing. Much of the media coverage of those in later life, particularly those living in aged care residences, has further fuelled what Sally Chivers has called the “nursing home specter” and delivered, in heightened and often spectacularised form, the “life-course narrative that dominant culture provides—an unliveable mind and unrecognizable body, mountainous expense” (Morganroth Gullette, 24). The discourse on ageing is characterised by the use of metaphor and metonymy, of which “the bubble” or “bubbling” is only one notable example. The culture of fear that surrounds the fourth age stems from the presumption that ageing inevitably leads to decay and decline in quality of life, and that the experience of ageing is characterised by various forms of physical and cognitive deterioration, such as dementia. Cultural gerontologist Hannah Zeilig has drawn attention to the pervasive use of metaphors—in both medical journals and mass media reports—to describe the experience of living with dementia. These metaphors attempt to capture and simplify the complexities of being, speaking, and knowing experienced by people with dementia. They are frequently used to communicate these experiences to people who do not live with dementia. The cultural metaphors of dementia are potent examples of ageism. They are not neutral in their connotations or implicit value judgements. These metaphors reveal wider social anxieties around ageing, despite the fact that people in their 40s and 50s can have dementia (Dementia Australia). As Zeilig has pointed out, many of these metaphors have presented a negative framing of dementia, describing the rising numbers of dementia diagnoses in apocalyptic, biblical terms such as “plague”, “crisis”, and “epidemic” (“Cultural Metaphor” 260). While this hyperbole may be grounded in statistics and the realities of an ageing population, it has nevertheless been alarming. This rhetoric has often been a necessary tactic for dementia organisations as part of their efforts to secure media coverage, raise public awareness of dementia, and lobby for increased government and private investment in funding research and support services. Despite these noble intentions, this rhetoric can risk excluding or marginalising the voices of people living with dementia. Some of the metaphors that have been used to describe dementia are particularly dehumanising and stigmatising, such as the perception of Alzheimer’s disease as a form of “living death”. This conception of Alzheimer’s, which Susan M. Behuniak has observed in both scholarly and popular discourse, elicits strong negative emotional responses of revulsion and fear. It constructs people with Alzheimer’s as abject zombie-like figures living a half-life or twilight existence. These trends in dementia discourse that Zeilig and Behuniak identified in the first half of the 2010s are also apparent in media imagery and discourse about older people in the COVID-19 pandemic. Much like the cultural narratives of dementia, these representations often reinforce the fourth age’s association with forms of vulnerability, decline and decay that are rendered abject. In contrast to this negative framing of both dementia and the fourth age, the trope of “living in a bubble” can also present a more ambivalent conception of both living with dementia and, by extension, the sociocultural experience of living in the fourth age during the time of COVID-19. “Bubbling” can serve a protective function for the person living with dementia by reducing sensory overload and cognitive confusion that may lead to anxiety and emotional distress. In dementia care, bubble wands and bubble wrap are two of the most commonly used tools in sensory therapy for reducing anxiety and agitation, and providing comfort (DailyCaring). These examples remind us of the materiality of the bubble, which functions as both cultural trope and material condition that affects people’s lives (to borrow from Helen Deutsch and Felicity Nussbaum, cited in Vivian Sobchack’s essay on metaphor and materiality). Within the diversity and range of caring practices encompassed by the trope of “bubbling”, there is clear potential for the bubble to be enabling, rather than disabling, if it is used to enhance quality of life and wellbeing for older people, rather than to separate, marginalise and isolate. Despite the multivalent possibilities of the bubble for enhancing quality of life for people with dementia, the bubble’s association with precarity has been heightened by its deployment to protect older people during the COVID-19 pandemic. This is a source of ambivalence around the COVID-19 bubble, a public health response that is acknowledged as having both protective and harmful effects. It involves “bubbling” older people, especially those living in residential care, by physically isolating them and limiting their contact with family and friends to conversations mediated by digital technology or a windowpane. By restricting physical and direct contact with the outside world in order to reduce and contain transmission of the virus, the COVID-19 bubble is intended to protect the physical health of older adults. But as Karra Harrington and Martin J. Sliwinski caution, this can also risk the cognitive health and mental wellbeing of older people by creating social isolation. These concerns about the negative health impacts of the COVID-19 bubble compound the existing popular understanding of late life as isolated and isolating, perpetuating the ageist assumptions that characterise the social imaginary around the fourth age. Creating Compassionate Bubbles The distress of separation caused by COVID-19 lockdowns and restrictions is felt by all generations, not just older people. Recognising the costs to our emotional and mental wellbeing of living in isolation to protect our bodies and our communities from viral invasion, Australian epidemiologist Mary-Louise McLaws has called for “a compassionate germ bubble”, modelled on New Zealand’s concept of an extended bubble that allows close contacts beyond one household. This alternative approach to “bubbling” is designed to strike a better balance between physical and mental health. Writing during Melbourne’s strict and prolonged lockdown following a second wave of cases in the winter of 2020, McLaws argued that “a compassionate germ bubble may foster resilience by reducing a sense of isolation for people living alone and friends, extended family and partners distressed by the separation”. There have been a number of creative and compassionate responses to the necessity of the COVID-19 bubble for protecting those most vulnerable to the virus. Aged care residences have developed innovative ways to safely maintain in-person visits and provide opportunities for face-to-face contact between residents and their families and friends. One example reported in the Australian media (Steger) is “The Window of Love” in Perth, which demonstrates the positive potential of the bubble—represented here as a pane of glass bordered by a painted frame—for facilitating social connection and supporting wellbeing despite restrictions on physical contact. The media reporting of these innovations tends to spectacularise the residents of these homes, reinforcing their fragility and vulnerability as they are framed behind plastic or glass. In December 2020, international media outlets The Guardian, RTE News, and Star Media posted a Reuters video story on their respective YouTube channels about a “hug bubble” created in an aged care home in Jeumont, France. This inflatable plastic tunnel allows physical touch between those living in the home and those outside it through hermetically sealed sleeves. Separating the resident from their visitors is a clear plastic sheet, which is disinfected by staff in between each visit. Recognising the importance of physical contact for wellbeing, nursing staff reported that the hug bubble has brought comfort to the residents, whose previous contact with family and friends since the outbreak of COVID-19 in March 2020 had been limited to video calls or talking through a window. Viewer comments reveal divergent responses to this media story across all three YouTube channels. Some viewers applaud the innovation while others disparage the hug bubble as “cruel” and “disgraceful”. Other comments register viewers’ ambivalence, recognising the good intentions behind the idea while despairing at the need for it. Several comments offer a snapshot of the cynical, often incoherent views about the pandemic commonly found on social media platforms like Facebook and Twitter, while also demonstrating the persistence of ageist attitudes that regard the elderly as a burden. These negative responses are striking in contrast with the positive framing of the original media report, which is presented as a “feel good” human interest story through brief interviews with family members and nursing home staff, reflecting on the residents’ experiences using the hug bubble. This positive framing is reinforced by the gentle music track accompanying the video posted on the RTE News channel. Beyond the institutional context of aged care residences, many families and communities have also engineered solutions to reduce the stress of separation. Craving physical contact after months of isolation, they have embraced the materiality and tactility inherent in the bubble trope. People have improvised using household objects, such as plastic sleeves attached to transparent shower curtains, to build “cuddle curtains”, and “hug machines” to enable safe—and playful—physical contact. These innovations and adaptations tap into the bubble’s playful qualities, while also “going viral” as families document their creativity, delight and joy through their own video stories shared on YouTube. As we move into the second year of the COVID-19 pandemic, with case numbers and the death toll continuing to climb globally, the concept of the COVID-19 bubble and its role in protecting the community will continue to be debated, refined and reconfigured in both public health responses and media discourse. Despite Australia’s relatively good fortune in terms of total number of COVID-related deaths compared to other Western nations such as the US and the UK, the disproportionately high number of deaths among Australians in aged care is a sobering reminder of the systemic failures in Australia’s aged care residences. As we move in and out of periods of social isolation, restrictions and lockdowns, it will become increasingly important to address the mental health impacts of “living in a bubble” and to consider creative, compassionate alternatives that challenge ageism and maintain quality of life for fourth age Australians. *** As COVID-19 and its management continue to reshape our world(s) and our relations to each other, its impacts continue to be unevenly felt, particularly for those in later life. For this reason, it becomes increasingly important to be alert to the ways in which “bubbling” the fourth age in response to COVID-19 risks reinforcing a homogenising view of older people as vulnerable and isolated, defenceless against viral invasion and voiceless in expressing agency and maintaining social connection. This essay responds to Hannah Zeilig’s earlier call to “radically rethink the ways in which age and ageing have been culturally configured” (“Critical Use of Narrative” 16). One of the purposes of this essay has been to critically assess some of the ways that the relatively new discourse of a fourth age—as somehow both qualitatively and quantifiably different to and separate from the third age—entails a homogenising view of older people. This view has enabled forms of ageism that have often been particularly brutal in their impact during the pandemic. In this essay we have argued that popular conceptions of and public health discourse and policy around the fourth age have often enabled—or, at the very least, supported—forms of ageism. This ageism has been further heightened through both the discourse and the imagery of the COVID-19 bubble. The fourth age, we argued, has often been understood as bubble-like: as a “stage” of life when one is somehow separated from the larger community and culture. The fourth age is configured as physically fragile and precarious, transient and temporary, ephemeral, and enclosed in—and as—its own world. Created in the name of protecting “our most vulnerable”, the bubble in the time of COVID-19 has heightened these pre-existing social anxieties around the fourth age. The challenge, as we move into the second year of the pandemic in Australia, is to find new ways of protecting the health and wellbeing of people in later life, while creating opportunities for connection, agency and play that are supported, rather than hindered, by the COVID-19 bubble. References Australian National Dictionary Centre. “2020 Word of the Year.” Canberra: School of Literature, Languages and Linguistics, ANU College of Arts and Social Sciences, Australian National University. 17 Nov. 2020. 12 Jan. 2021 <https://slll.cass.anu.edu.au/centres/andc/news/2020-word-year>. Behuniak, Susan M. “The Living Dead? The Construction of People with Alzheimer’s Disease as Zombies.” Ageing & Society 21 (2011): 70–92. Chivers, Sally. “‘Blind People Don’t Run’: Escaping the ‘Nursing Home Specter’ in Children of Nature and Cloudburst.” Journal of Aging Studies 34 (2015): 134–41. “COVID-19 Deaths by Age Group and Sex.” Australian Government Department of Health: Coronovirus (COVID-19) Current Situation and Case Numbers. 1 Jan. 2021 <https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert/coronavirus-covid-19-current-situation-and-case-numbers#cases-and-deaths-by-age-and-sex>. DailyCaring. “6 Alzheimer’s Sensory Activities Reduce Anxiety without Medication.” 12 Jan. 2021 <https://dailycaring.com/6-alzheimers-sensory-activities-reduce-anxiety-without-medication/>. Dementia Australia. “What Is Dementia?” 12 Jan. 2021 <https://www.dementia.org.au/about-dementia/what-is-dementia>. Fuchs, Anne, Desmond O'Neill, Mary Cosgrove, and Julia Langbein. “Report on COVID-19 – Reframing Ageing Webinar 12 June 2020.” Preprint. Aug. 2020. DOI: 10.13140/RG.2.2.34508.44161. Gilleard, Chris, and Paul Higgs. “Aging without Agency: Theorizing the Fourth Age.” Aging and Mental Health 14.2 (2010): 121–28. Gilleard, Chris, and Paul Higgs. “Ageing Abjection and Embodiment in the Fourth Age.” Journal of Aging Studies 25.2 (2011): 135–42. Gilleard, Chris, and Paul Higgs. “The Fourth Age and the Concept of a ‘Social Imaginary’: A Theoretical Excursus.” Journal of Aging Studies 27 (2013): 368–76. Gulland, Jackie. “Households, Bubbles, and Hugging Grandparents: Caring and Lockdown Rules during COVID-19.” Feminist Legal Studies 28 (2020): 329–39. Harrington, Karra, and Martin J. Sliwinski. “The Loneliness of Social Isolation Can Affect Your Brain and Raise Dementia Risk in Older Adults.” The Conversation 4 Aug. 2020. 12 Jan. 2021 <https://theconversation.com/the-loneliness-of-social-isolation-can-affect-your-brain-and-raise-dementia-risk-in-older-adults-141752>. Laslett, Peter. A Fresh Map of Life: The Emergence of the Third Age. London: Weidenfeld and Nicolson, 1989. Lloyd, Liz. “The Fourth Age.” Routledge Handbook of Cultural Gerontology. Eds. Julia Twigg and Wendy Martin. London: Routledge, 2015. 20 Dec. 2020 <https://www.routledgehandbooks.com/doi/10.4324/9780203097090.ch33>. McLaws, Mary-Louise. “What Is the COVID ‘Bubble’ Concept, and Could It Work in Australia?” The Conversation 1 Sep. 2020. 12 Jan. 2021 <https://theconversation.com/what-is-the-covid-bubble-concept-and-could-it-work-in-australia-144938>. Morganroth Gullette, Margaret. “Aged by Culture.” Routledge Handbook of Cultural Gerontology. Eds. Julia Twigg and Wendy Martin. London: Routledge, 2015. 28 Dec. 2020 <https://www.routledgehandbooks.com/doi/10.4324/9780203097090.ch3>. Royal Commission into Aged Care Quality and Safety. Neglect. Interim Report Volume 1. Canberra: Commonwealth Government of Australia, 31 Oct. 2019. 12 Jan. 2021 <https://agedcare.royalcommission.gov.au/publications/interim-report>. Sobchack, Vivian. “A Leg to Stand On: Prosthetics, Metaphor, and Materiality.” In The Prosthetic Impulse: From a Posthuman Present to a Biocultural Future. Cambridge: MIT Press, 2006. 17–41. Steger, Sarah. “Coronavirus Crisis: Oryx Communities Aged Care Home Creates ‘Window of Love’ to Help Residents Stay Connected to Families.” The West Australian 5 Apr. 2020. 12 Jan. 2021 <https://thewest.com.au/news/coronavirus/coronavirus-crisis-oryx-communities-aged-care-home-creates-window-of-love-to-help-residents-stay-connected-to-families-ng-b881510245z>. Zeilig, Hannah. “The Critical Use of Narrative and Literature in Gerontology.” International Journal of Ageing and Later Life 6.2 (2011): 7-37. ———. “Dementia as a Cultural Metaphor.” The Gerontologist 54.2 (2013): 258–67. ———. “What Do We Mean When We Talk about Dementia? Exploring Cultural Representations of ‘Dementia’.” Working with Older People 19.1 (2015): 12–20.

She leant lazily across the picnic hamper and reached for my hearing aid in my open-palmed hand. I jerked away from her, batting her hand away from mine. The glare of the summer sun blinded me. I struck empty air. Her tendril-fingers seized the beige seashell curve of my hearing aid and she lifted the cargo of sound towards her eyes. She peered at the empty battery-cage before flicking it open and shut as if it was a cigarette lighter, as if she could spark hearing-life into this trick of plastic and metal that held no meaning outside of my ear. I stared at her. A band of horror tightened around my throat, strangling my shout: ‘Don’t do that!’ I clenched my fist around the new battery that I had been about to insert into my hearing aid and imagined it speeding like a bullet towards her heart. This dream arrived as I researched my anthology of memoir-style essays on deafness, The Art of Being. I had already been reflecting and writing for several years about my relationship with my deaf-self and the impact of my deafness on my life, but I remained uneasy about writing about my deaf-life. I’ve lived all my adult life entirely in the hearing world, and so recasting myself as a deaf woman with something pressing to say about deaf people’s lives felt disturbing. The urgency to tell my story and my anxiety to contest certain assumptions about deafness were real, but I was hampered by diffidence. The dream felt potent, as if my deaf-self was asserting itself, challenging my hearing persona. I was the sole deaf child in a family of five muddling along in a weatherboard war commission house at The Grange in Brisbane during the nineteen fifties and nineteen sixties. My father’s resume included being in the army during World War Two, an official for the boxing events at the 1956 Melbourne Olympic Games and a bookie with a gift for telling stories. My mother had spent her childhood on a cherry orchard in Young, worked as a nurse in war-time Sydney and married my father in Townsville after a whirlwind romance on Magnetic Island before setting up home in Brisbane. My older sister wore her dark hair in thick Annie-Oakley style plaits and my brother took me on a hike along the Kedron Brook one summer morning before lunchtime. My parents did not know of any deaf relatives in their families, and my sister and brother did not have any friends with deaf siblings. There was just me, the little deaf girl. Most children are curious about where they come from. Such curiosity marks their first foray into sexual development and sense of identity. I don’t remember expressing such curiosity. Instead, I was diverted by my mother’s story of her discovery that I was deaf. The way my mother tells the story, it is as if I had two births with the date of the diagnosis of my deafness marking my real arrival, over-riding the false start of my physical birth three years earlier. Once my mother realized that I was deaf, she was able to get on with it, the ‘it’ being to defy the inevitability of a constrained life for her deaf child. My mother came out swinging; by hook or by crook, her deaf daughter was going to learn to speak and to be educated and to take her place in the hearing world and to live a normal life and that was that. She found out about the Commonwealth Acoustics Laboratory (now known as Australian Hearing Services) where, after I completed a battery of auditory tests, I was fitted with a hearing aid. This was a small metal box, to be worn in a harness around my body, with a long looping plastic cord connected to a beige ear-mould. An instrument for piercing silence, it absorbed and conveyed sounds, with those sounds eventually separating themselves out into patterns of words and finally into strings of sentences. Without my hearing aid, if I am concentrating, and if the sounds are made loudly, I am aware of the sounds at the deeper end of the scale. Sometimes, it’s not so much that I can hear them; it’s more that I know that those sounds are happening. My aural memory of the deep-register sounds helps me to “hear” them, much like the recollection of any tune replays itself in your imagination. With and without my hearing aids, if I am not watching the source of those sounds – for example, if the sounds are taking place in another room or even just behind me – I am not immediately able to distinguish whether the sounds are conversational or musical or happy or angry. I can only discriminate once I’ve established the rhythm of the sounds; if the rhythm is at a tearing, jagged pace with an exaggerated rise and fall in the volume, I might reasonably assume that angry words are being had. I cannot hear high-pitched sounds at all, with and without my hearing aids: I cannot hear sibilants, the “cees” and “esses” and “zeds”. I cannot hear those sounds which bounce or puff off from your lips, such as the letters “b” and “p”; I cannot hear that sound which trampolines from the press of your tongue against the back of your front teeth, the letter “t”. With a hearing-aid I can hear and discriminate among the braying, hee-hawing, lilting, oohing and twanging sounds of the vowels ... but only if I am concentrating, and if I am watching the source of the sounds. Without my hearing aid, I might also hear sharp and sudden sounds like the clap of hands or crash of plates, depending on the volume of the noise. But I cannot hear the ring of the telephone, or the chime of the door bell, or the urgent siren of an ambulance speeding down the street. My hearing aid helps me to hear some of these sounds. I was a pupil in an oral-deaf education program for five years until the end of 1962. During those years, I was variously coaxed, dragooned and persuaded into the world of hearing. I was introduced to a world of bubbles, balloons and fingers placed on lips to learn the shape, taste and feel of sounds, their push and pull of air through tongue and lips. By these mechanics, I gained entry to the portal of spoken, rather than signed, speech. When I was eight years old, my parents moved me from the Gladstone Road School for the Deaf in Dutton Park to All Hallows, an inner-city girls’ school, for the start of Grade Three. I did not know, of course, that I was also leaving my world of deaf friends to begin a new life immersed in the hearing world. I had no way of understanding that this act of transferring me from one school to another was a profound statement of my parents’ hopes for me. They wanted me to have a life in which I would enjoy all the advantages and opportunities routinely available to hearing people. Like so many parents before them, ‘they had to find answers that might not, for all they knew, exist . . . How far would I be able to lead a ‘normal’ life? . . . How would I earn a living? You can imagine what forebodings weighed on them. They could not know that things might work out better than they feared’ (Wright, 22). Now, forty-four years later, I have been reflecting on the impact of that long-ago decision made on my behalf by my parents. They made the right decision for me. The quality of my life reflects the rightness of their decision. I have enjoyed a satisfying career in social work and public policy embedded in a life of love and friendships. This does not mean that I believe that my parents’ decision to remove me from one world to another would necessarily be the right decision for another deaf child. I am not a zealot for the cause of oralism despite its obvious benefits. I am, however, stirred by the Gemini-like duality within me, the deaf girl who is twin to the hearing persona I show to the world, to tell my story of deafness as precisely as I can. Before I can do this, I have to find that story because it is not as apparent to me as might be expected. In an early published memoir-essay about my deaf girlhood, I Hear with My Eyes (in Schulz), I wrote about my mother’s persistence in making sure that I learnt to speak rather than sign, the assumed communication strategy for most deaf people back in the 1950s. I crafted a selection of anecdotes, ranging in tone, I hoped, from sad to tender to laugh-out-loud funny. I speculated on the meaning of certain incidents in defining who I am and the successes I have enjoyed as a deaf woman in a hearing world. When I wrote this essay, I searched for what I wanted to say. I thought, by the end of it, that I’d said everything that I wanted to say. I was ready to move on, to write about other things. However, I was delayed by readers’ responses to that essay and to subsequent public speaking engagements. Some people who read my essay told me that they liked its fresh, direct approach. Others said that they were moved by it. Friends were curious and fascinated to get the inside story of my life as a deaf person as it has not been a topic of conversation or inquiry among us. They felt that they’d learnt something about what it means to be deaf. Many responses to my essay and public presentations had relief and surprise as their emotional core. Parents have cried on hearing me talk about the fullness of my life and seem to regard me as having given them permission to hope for their own deaf children. Educators have invited me to speak at parent education evenings because ‘to have an adult who has a hearing impairment and who has developed great spoken language and is able to communicate in the community at large – that would be a great encouragement and inspiration for our families’ (Email, April 2007). I became uncomfortable about these responses because I was not sure that I had been as honest or direct as I could have been. What lessons on being deaf have people absorbed by reading my essay and listening to my presentations? I did not set out to be duplicitous, but I may have embraced the writer’s aim for the neatly curved narrative arc at the cost of the flinty self-regarding eye and the uncertain conclusion. * * * Let me start again. I was born deaf at a time, in the mid 1950s, when people still spoke of the ‘deaf-mute’ or the ‘deaf and dumb.’ I belonged to a category of children who attracted the gaze of the curious, the kind, and the cruel with mixed results. We were bombarded with questions we could either not hear and so could not answer, or that made us feel we were objects for exploration. We were the patronized beneficiaries of charitable picnics organized for ‘the disadvantaged and the handicapped.’ Occasionally, we were the subject of taunts, with words such as ‘spastic’ being speared towards us as if to be called such a name was a bad thing. I glossed over this muddled social response to deafness in my published essay. I cannot claim innocence as my defence. I knew I was glossing over it but I thought this was right and proper: after all, why stir up jagged memories? Aren’t some things better left unexpressed? Besides, keep the conversation nice, I thought. The nature of readers’ responses to my essay provoked me into a deeper exploration of deafness. I was shocked by the intensity of so many parents’ grief and anxiety about their children’s deafness, and frustrated by the notion that I am an inspiration because I am deaf but oral. I wondered what this implied about my childhood deaf friends who may not speak orally as well as I do, but who nevertheless enjoy fulfilling lives. I was stunned by the admission of a mother of a five year old deaf son who, despite not being able to speak, has not been taught how to Sign. She said, ‘Now that I’ve met you, I’m not so frightened of deaf people anymore.’ My shock may strike the average hearing person as naïve, but I was unnerved that so many parents of children newly diagnosed with deafness were grasping my words with the relief of people who have long ago lost hope in the possibilities for their deaf sons and daughters. My shock is not directed at these parents but at some unnameable ‘thing out there.’ What is going on out there in the big world that, 52 years after my mother experienced her own grief, bewilderment, anxiety and quest to forge a good life for her little deaf daughter, contemporary parents are still experiencing those very same fears and asking the same questions? Why do parents still receive the news of their child’s deafness as a death sentence of sorts, the death of hope and prospects for their child, when the facts show – based on my own life experiences and observations of my deaf school friends’ lives – that far from being a death sentence, the diagnosis of deafness simply propels a child into a different life, not a lesser life? Evidently, a different sort of silence has been created over the years; not the silence of hearing loss but the silence of lost stories, invisible stories, unspoken stories. I have contributed to that silence. For as long as I can remember, and certainly for all of my adult life, I have been careful to avoid being identified as ‘a deaf person.’ Although much of my career was taken up with considering the equity dilemmas of people with a disability, I had never assumed the mantle of advocacy for deaf people or deaf rights. Some of my early silence about deaf identity politics was consistent with my desire not to shine the torch on myself in this way. I did not want to draw attention to myself by what I did not have, that is, less hearing than other people. I thought that if I lived my life as fully as possible in the hearing world and with as little fuss as possible, then my success in blending in would be eloquence enough. If I was going to attract attention, I wanted it to be on the basis of merit, on what I achieved. Others would draw the conclusions that needed to be drawn, that is, that deaf people can take their place fully in the hearing world. I also accepted that if I was to be fully ‘successful’ – and I didn’t investigate the meaning of that word for many years – in the hearing world, then I ought to isolate myself from my deaf friends and from the deaf culture. I continued to miss them, particularly one childhood friend, but I was resolute. I never seriously explored the possibility of straddling both worlds, despite the occasional invitation to do so. For example, one of my childhood deaf friends, Damien, visited me at my parents’ home once, when we were both still in our teens. He was keen for me to join him in the Deaf Theatre, but I couldn’t muster the emotional dexterity that I felt this required. Instead, I let myself to be content to hear news of my childhood deaf friends through the grape-vine. This was, inevitably, a patchy process that lent itself to caricature. Single snippets of information about this person or that person ballooned into portrait-size depictions of their lives as I sketched the remaining blanks of their history with my imagination as my only tool. My capacity to be content with my imagination faltered. * * * Despite the construction of public images of deafness around the highly visible performance of hand-signed communication, the ‘how-small-can-we-go?’ advertorials of hearing aids and the cochlear implant with its head-worn speech processor, deafness is often described as ‘the invisible disability.’ My own experience bore this out. I became increasingly self-conscious about the singularity of my particular success, moderate in the big scheme of things though that may be. I looked around me and wondered ‘Why don’t I bump into more deaf people during the course of my daily life?’ After all, I am not a recluse. I have broad interests. I have travelled a lot, and have enjoyed a policy career for some thirty years, spanning the three tiers of government and scaling the competitive ladder with a reasonable degree of nimbleness. Such a career has got me out and about quite a bit: up and down the Queensland coast and out west, down to Sydney, Melbourne, Canberra, Adelaide and Hobart, and to the United Kingdom. And yet, not once in those thirty years did I get to share an office or a chance meeting or a lunch break with another deaf person. The one exception took place in the United Kingdom when I attended a national conference in which the keynote speaker was the Chairman of the Audit Commission, a man whose charisma outshines his profound deafness. After my return to Australia from the United Kingdom, a newspaper article about an education centre for deaf children in a leafy suburb of Brisbane, prompted me into action. I decided to investigate what was going on in the world of education for deaf children and so, one warm morning in 2006, I found myself waiting in the foyer for the centre’s clinical director. I flicked through a bundle of brochures and newsletters. They were loaded with images of smiling children wearing cochlear implants. Their message was clear: a cochlear implant brought joy, communication and participation in all that the world has to offer. This seemed an easy miracle. I had arrived with an open mind but now found myself feeling unexpectedly tense, as if I was about to walk a high-wire without the benefit of a safety net. Not knowing the reason for my fear, I swallowed it and smiled at the director in greeting upon her arrival. She is physically a small person but her energy is large. Her passion is bracing. That morning, she was quick to assert the power of cochlear implants by simply asking me, ‘Have you ever considered having an implant?’ When I shook my head, she looked at me appraisingly, ‘I’m sure you’d benefit from it’ before ushering me into a room shining with sun-dappled colour and crowded with a mess of little boys and girls. The children were arrayed in a democracy of shorts, shirts, and sandals. Only the occasional hair-ribbon or newly pressed skirt separated this girl from that boy. Some young mothers and fathers, their faces stretched with tension, stood or sat around the room’s perimeter watching their infant children. The noise in the room was orchestral, rising and falling to a mash of shouts, cries and squeals. A table had been set with several plastic plates in which diced pieces of browning apple, orange slices and melon chunks swam in a pond of juice. Some small children clustered around it, waiting to be served. When they finished their morning fruit, they were rounded up to sit at the front of the room, before a teacher poised with finger-puppets of ducks. I tripped over a red plastic chair – its tiny size designed to accommodate an infant’s bottom and small-sausage legs – and lowered myself onto it to take in the events going on around me. The little boys and girls laughed merrily as they watched their teacher narrate the story of a mother duck and her five baby ducks. Her hands moved in a flurry of duck-billed mimicry. ‘“Quack! Quack! Quack!” said the mother duck!’ The parents trilled along in time with the teacher. As I watched the children at the education centre that sunny morning, I saw that my silence had acted as a brake of sorts. I had, for too long, buried the chance to understand better the complex lives of deaf people as we negotiate the claims and demands of the hearing world. While it is true that actions speak louder than words, the occasional spoken and written word must surely help things along a little. I also began to reflect on the apparent absence of the inter-generational transfer of wisdom and insights born of experience rather than academic studies. Why does each new generation of parents approach the diagnosis of their newborn child’s disability or deafness with such intensity of fear, helplessness and dread for their child’s fate? I am not querying the inevitability of parents experiencing disappointment and shock at receiving unexpected news. I accept that to be born deaf means to be born with less than perfect hearing. All the same, it ought not to be inevitable that parents endure sustained grief about their child’s prospects. They ought to be illuminated as quickly as possible about all that is possible for their child. In particular, they ought to be encouraged to enjoy great hopes for their child. I mused about the power of story-telling to influence attitudes. G. Thomas Couser claims that ‘life writing can play a significant role in changing public attitudes about deafness’ (221) but then proceeds to cast doubt on his own assertion by later asking, ‘to what degree and how do the extant narratives of deafness rewrite the discourse of disability? Indeed, to what degree and how do they manage to represent the experience of deafness at all?’ (225). Certainly, stories from the Deaf community do not speak for me as my life has not been shaped by the framing of deafness as a separate linguistic and cultural entity. Nor am I drawn to the militancy of identity politics that uses terms such as ‘oppression’ and ‘oppressors’ to deride the efforts of parents and educators to teach deaf children to speak (Lane; Padden and Humphries). This seems to be unhelpfully hostile and assumes that deafness is the sole arbitrating reason that deaf people struggle with understanding who they are. It is the nature of being human to struggle with who we are. Whether we are deaf, migrants, black, gay, mentally ill – or none of these things – we are all answerable to the questions: ‘who am I and what is my place in the world?’ As I cast around for stories of deafness and deaf people with which I could relate, I pondered on the relative infrequency of deaf characters in literature, and the scarcity of autobiographies by deaf writers or biographies of deaf people by either deaf or hearing people. I also wondered whether written stories of deafness, memoirs and fiction, shape public perceptions or do they simply respond to existing public perceptions of deafness? As Susan DeGaia, a deaf academic at California State University writes, ‘Analysing the way stories are told can show us a lot about who is most powerful, most heard, whose perspective matters most to society. I think if we polled deaf/Deaf people, we would find many things missing from the stories that are told about them’ (DeGaia). Fighting my diffidence in staking out my persona as a ‘deaf woman’ and mustering the ‘conviction as to the importance of what [I have] to say, [my] right to say it’ (Olsen 27), I decided to write The Art of Being Deaf, an anthology of personal essays in the manner of reflective memoirs on deafness drawing on my own life experiences and supported by additional research. This presented me with a narrative dilemma because my deafness is just one of several life-events by which I understand myself. I wanted to find fresh ways of telling stories of deaf experiences while fashioning my memoir essays to show the texture of my life in all its variousness. A.N.Wilson’s observation about the precarious insensitivity of biographical writing was my guiding pole-star: the sense of our own identity is fluid and tolerant, whereas our sense of the identity of others is always more fixed and quite often edges towards caricature. We know within ourselves that we can be twenty different persons in a single day and that the attempt to explain our personality is doomed to become a falsehood after only a few words ... . And yet ... works of literature, novels and biographies depend for their aesthetic success precisely on this insensitive ability to simplify, to describe, to draw lines around another person and say, ‘This is she’ or ‘This is he.’ I have chosen to explore my relationship with my deafness through the multiple-threads of writing several personal essays as my story-telling vehicle rather than as a single-thread autobiography. The multiple-thread approach to telling my stories also sought to avoid the pitfalls of identity narrative in which I might unwittingly set myself up as an exemplar of one sort or another, be it as a ‘successful deaf person’ or as an ‘angry militant deaf activist’ or as ‘a deaf individual in denial attempting to pass as hearing.’ But in seeking to avoid these sorts of stories, what autobiographical story am I trying to tell? Because, other than being deaf, my life is not otherwise especially unusual. It is pitted here with sadness and lifted there with joy, but it is mostly a plateau held stable by the grist of daily life. Christopher Jon Heuer recognises this dilemma when he writes, ‘neither autobiography nor biography nor fiction can survive without discord. Without it, we are left with boredom. Without it, what we have is the lack of a point, a theme and a plot’ (Heuer 196). By writing The Art of Being Deaf, I am learning more than I have to teach. In the absence of deaf friends or mentors, and in the climate of my own reluctance to discuss my concerns with hearing people who, when I do flag any anxieties about issues arising from my deafness tend to be hearty and upbeat in their responses, I have had to work things out for myself. In hindsight, I suspect that I have simply ignored most of my deafness-related difficulties, leaving the heavy lifting work to my parents, teachers, and friends – ‘for it is the non-deaf who absorb a large part of the disability’ (Wright, 5) – and just got on with things by complying with what was expected of me, usually to good practical effect but at the cost of enriching my understanding of myself and possibly at the cost of intimacy. Reading deaf fiction and memoirs during the course of this writing project is proving to be helpful for me. I enjoy the companionability of it, but not until I got over my fright at seeing so many documented versions of deaf experiences, and it was a fright. For a while there, it was like walking through the Hall of Mirrors in Luna Park. Did I really look like that? Or no, perhaps I was like that? But no, here’s another turn, another mirror, another face. Spinning, twisting, turning. It was only when I stopped searching for the right mirror, the single defining portrait, that I began to enjoy seeing my deaf-self/hearing-persona experiences reflected in, or challenged by, what I read. Other deaf writers’ recollections are stirring into fresh life my own buried memories, prompting me to re-imagine them so that I can examine my responses to those experiences more contemplatively and less reactively than I might have done originally. We can learn about the diversity of deaf experiences and the nuances of deaf identity that rise above the stock symbolic scripts by reading authentic, well-crafted stories by memoirists and novelists. Whether they are hearing or deaf writers, by providing different perspectives on deafness, they have something useful to say, demonstrate and illustrate about deafness and deaf people. I imagine the possibility of my book, The Art of Being Deaf, providing a similar mentoring role to other deaf people and families.References Couser, G. Thomas. Recovering Bodies: Illness, Disablity, and Life Writing. Wisconsin: University of Wisconsin Press, 1997. Heuer, Christopher Jon. ‘Deafness as Conflict and Conflict Component.’ Sign Language Studies 7.2 (Winter 2007): 195-199. Lane, Harlan. When the Mind Hears: A History of the Deaf. New York: Random House, 1984 Olsen, Tillie. Silences. New York: Delta/Seymour Lawrence. 1978. Padden, Carol, and Tom Humphries. Deaf in America: Voices from a Culture. Cambridge, Mass.: Harvard University Press, 1998. Schulz, J. (ed). A Revealed Life. Sydney: ABC Books and Griffith Review. 2007 Wilson, A.N. Incline Our Hearts. London: Penguin Books. 1988. Wright, David. Deafness: An Autobiography. New York: Stein and Day, 1969.

Abstract Objective. To describe the quality of the relationship between nurses and patients under mechanical ventilation.Methods. This observational study, performed in a cardiac surgery intensive care unit in Iran, selected 10 nurses and 35 patients through simple random and convenience sampling, respectively. One of the researchers observed 175 communications between nurses and patients in different work shifts and recorded the results according to a checklist. Nurse and patient satisfaction with the communication was assessed by using a six-item Likert scale, 8 to 12 h after extubation.Results. Most of the patients were male (77.1%), while most of the nurses were female (60%). Patients started over 75% of the communications observed. The content of the communication was related mostly to physical needs and pain. Besides, the majority of patients used purposeful stares and hand gestures, and head nod for communication.Most of the communications between patients and nurses were satisfied ‘very low’ (45.7% in nurses, versus 54.3% in patients). However, ‘complete satisfaction’ was lower in nurses (0%), compared with patients (5.7%). No statistically significant correlation was found between patients’ and nurses’ satisfaction and demographic variables.Conclusion. The results showed that communication between nurses and mechanically ventilated patients was built through traditional methods and was based on the patients’ requests. This issue might be the cause of an undesirable level of their satisfaction with the communication, given that effective communication can lead to understanding and meeting the needs of the patients.Descriptors: non-verbal communication; ventilators, mechanical; cardiac care facilities; patient satisfaction; intensive care units.How to cite this article: Momennasab M, Ardakani MS, Rad FD, Dokoohaki R, Dakhesh R, Jaberi A. Quality of Nurses’ Communication with Mechanically Ventilated Patients in a Cardiac Surgery Intensive Care Unit. Invest. Educ. Enferm. 2019; 37(2):e02.ReferencesFelce D, Perry J. Quality of Life: Its Definition and Measurement. Res. Dev. Disabil. 1995; 16(1):51-74.Khalaila R, Zbidat W, Anwar K, Bayya A, Linton DM, Sviri S. Communication difficulties and psychoemotional distress in patients receiving mechanical ventilation. Am. J. Crit. Care. 2011; 20(6):470-9.Wang Y, Li H, Zou H, Li Y. Analysis of complaints from patients during mechanical ventilation after cardiac surgery: a retrospective study. J. Cardiothorac. Vasc. Anesth. 2015; 29(4):990-4.Myhren H, Ekeberg O, Stokland O. Satisfaction with communication in ICU patients and relatives: comparisons with medical staffs’ expectations and the relationship with psychological distress. Patient Educ. Couns. 2011; 85(2):237-44.Marasinghe M, Fonseka W, Wanishri P, Nissanka N, Silva B. An Exploration of Patients’ Experiences of Mechanical Ventilation. OUSL J. 2015; 9:83-96.Flinterud SI, Andershed B. Transitions in the communication experiences of tracheostomised patients in intensive care: a qualitative descriptive study. J. Clin. Nurs. 2015; 24(15-16):2295-304.Sutt A-L, Cornwell P, Mullany D, Kinneally T, Fraser JF. The use of tracheostomy speaking valves in mechanically ventilated patients results in improved communication and does not prolong ventilation time in cardiothoracic intensive care unit patients. J. Crit. Care. 2015; 30(3):491-4.Happ MB, Seaman JB, Nilsen ML, Sciulli A, Tate JA, Saul M, et al. The number of mechanically ventilated ICU patients meeting communication criteria. Heart Lung. 2015; 44(1):45-9.Happ MB, Sereika SM, Houze MP, Seaman JB, Tate JA, Nilsen ML, et al. Quality of care and resource use among mechanically ventilated patients before and after an intervention to assist nurse-nonvocal patient communication. Heart Lung.2015; 44(5):408-15.Alasad J, Ahmad M. Communication with critically ill patients. Journal of advanced nursing. 2005; 50(4):356-62.Sabet Sarvestani R, Moattari M, Nasrabadi AN, Momennasab M, Yektatalab S. Challenges of nursing handover: A qualitative study. Clin. Nurs. Res. 2015; 24(3):234-52.Anderson WG, Puntillo K, Boyle D, Barbour S, Turner K, Cimino J, et al. ICU Bedside Nurses’ Involvement in Palliative Care Communication: A Multicenter Survey. J. Pain Symptom Manage. 2016; 51(3):589-96.Otuzoğlu M, Karahan A. Determining the effectiveness of illustrated communication material for communication with intubated patients at an intensive care unit. Int. J. Nurs. Pract. 2014; 20(5):490-8.Jarvis C, Forbes H, Watt E. Jarnis’s physical examination & health assessment. Sydney: Saunders Elsevier Australia; 2012.Karlsson V, Forsberg A, Bergbom I. Communication when patients are conscious during respirator treatment—A hermeneutic observation study. Intensive Crit. Care Nurs. 2012; 28(4):197-207. Shafipour V, Mohammad E, Ahmadi F. Barriers to Nurse-Patient Communication in Cardiac Surgery Wards: A Qualitative Study. Glob. J. Health Science. 2014; 6(6):234-44.Arabi A, Tavakol K. Patient’s experiences of mechanical ventilation. Iran. J. Nurs. Midwifery Res. 2009; 14(2).Taylor RC, Lillis C, LeMone P. Fundamentals of Nursing: The Art and Science of Nursing Care. Philadelphia: Lippincott Williams & Wilkins; 2010.Chahraoui K, Laurent A, Bioy A, Quenot J-P. Psychological experience of patients 3 months after a stay in the intensive care unit: A descriptive and qualitative study. J. Crit. Care. 2015; 30(3):599-605.Happ MB, Garrett K, Thomas DD, et al. Nurse-patient communication interactions in the intensive care unit. American J. Crit. Care..2011; 20(2):e28-e40.Tadrisi S, Madani S, Farmand F, Ebadi A, KarimiZarchi AA, Mirhashemi S, et al. Richmond agitation–sedation scale validity and reliability in intensive care unit adult patients Persian version. J. Crit. Care. Nurs. 2009; 2(1):15-21.Teasdale G, Jennett B. Assessment of coma and impaired consciousness: a practical scale. Lancet. 1974; 304(7872):81-4. Invest Educ Enferm. 2019; 37(2): e02 Quality of Nurses’ Communication with Mechanically Ventilated Patients in a Cardiac Surgery Intensive Care UnitNilsen ML, Sereika SM, Hoffman LA, Barnato A, Donovan H, Happ MB. Nurse and Patient Interaction Behaviors’ Effects on Nursing Care Quality for Mechanically Ventilated Older Adults in the ICU. Res. Gerontol. Nurs. 2014; 7(3):113-25.Gold RL. Roles in sociological field observations. Soc. Forces. 1958:217-23.Gashmard R, Bagherzadeh R, Pouladi Sh, Akaberuan S, Jahanor F. Evaluating the Factors Influencing Productivity of Medical Staff in Hospitals Affiliated Bushehr University of Medical Sciences 2012, Bushehr, Iran. World Appl. Sci. J. 2013; 28(12):2061-8.Magnus VS, Turkington L. Communication interaction in ICU—patient and staff experiences and perceptions. Intensive Crit. Care Nurs. 2006; 22(3):167-80.SabetSarvestani R, Moattari M, Nasrabadi AN, Momennasab M, Yektatalab S, Jafari A. Empowering nurses through action research for developing a new nursing handover program in a pediatric ward in Iran. Action Res. 2017; 15(2):214-35.Momennasab M, Ghahramani T, Yektatalab S, Zand F. Physical and Mental Health of Patients Immediately After Discharge From Intensive Care Unit and 24 Hours Later. Trauma Mon. 2016; 21(1):e29231.Hedayati E, Hazrati M, Momennasab M, et al. The effect of need-based spiritual/religious intervention on spiritual well-being and anxiety of elderly people. Holist. Nurs. Pract. 2015; 29(3):136-43. Balandin S, Hemsley B, Sigafoos J, Green V. Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs. Appl. Nurs. Res. 2007; 20(2):56-62.Happ MB, Tuite P, Dobbin K, DiVirgilio-Thomas D, Kitutu J. Communication ability, method, and content among nonspeaking nonsurviving patients treated with mechanical ventilation in the intensive care unit. Am. J. Crit. Care. 2004; 13(3):210-8.Happ MB, Garrett KL, Tate JA, DiVirgilio D, Houze MP, Demirci JR, et al. Effect of a multi-level intervention on nurse–patient communication in the intensive care unit: results of the SPEACS trial. Heart Lung. 2014; 43(2):89- 98.

The importance and power of the biomedical approach to health and illness cannot be under-estimated. It has underpinned Western understandings of medical science and technology; it has informed health systems and the training of medical personnel; and arguably it has become articulated in patients' experience of illness and treatment. The roots of this model are traced to the valorization of rational thought in the Enlightenment which, according to Lupton, was accompanied by the increasing professionalisation of medicine through university training of doctors and control over their licences to practice. Further, she argues the discovery of bacterial causes of scourges like tuberculosis, cholera and typhoid in the nineteenth century further increased the power and status of the profession to the extent that excellence in medicine became more closely associated with rigorous scientific knowledge than empathic bedside manner (84). The emerging doctrine of specific aetiology that evolved into biomedicine had replaced the older philosophical understanding of health as a state of equilibrium and disease as a lack of harmony between people and their environment (Dubos, 5-6; Morgan, Calnan and Manning 15). The patient's interpretation of illness and symptoms became reconfigured by the doctor as an identifiable disease state that can be investigated and (usually) treated, pharmacologically or surgically. Engel acknowledged the power of the biomedical model but labelled it reductionistic and dualistic. He said that it reduced illness to chemistry and physics and separated bodies from minds while conceptualising bodies as machines (131). Biochemical or biophysical abnormality becomes the criterion for diagnosis of the disease and the treatment of illness. The authoritative, objective, and scientific approach to medicine that constructs illness as not more than, but also no less than, a biochemical/physical effect of disease, in turn, constructs medical care as interventionist, scientific and empirical, but above all as the privileged domain of the physician. The same approach that defines the role of the physician ascribes a complementary but dependent role for the patient. The ill, after all, are expected to seek and then undergo treatment. Within such a paradigm, Parsons proposed an influential and much quoted set of institutionalised social expectations associated with the "sick role" to distinguish people who are ill from those who are well. Briefly, according to his theory, the sick person has some social privileges but also some social obligations: exemption from other normal social roles depending on the nature and seriousness of the illness; not responsible for the illness; should be motivated to get well; and should seek and co-operate with the treatment offered (436-37). Parsons' functionalism with its assumption of a homogeneous social structure and value system has attracted considerable criticism. At the very least, he did not differentiate between different medical conditions and their social and cultural implications. But, that said, his "sick role" or modified versions of it remains tied up with the biomedical framework of its context. Meanings of Illness or Minds, Emotions and Social Processes Ideas about illness (and wellness for that matter) are culturally dependent. Illness as the opposite of wellness, as non-health, is an impaired sense of well-being and in that sense at least, requires some self-diagnosis before treatment is sought. Individuals make judgements about their health against prevailing implicit standards of what it is to feel well (Eisenberg and Kleinman 13). As the cultural norms of illness change over time, what it means to be sick and what the "sick role" entails changes too (Christopoulos 93). The discursive label of illness, especially if the disease has specific moral connotations surrounding it, can have considerable consequences for the patient and their social identity to the extent that the "clinical label becomes a master status, one that swamps all other identities and compresses the identity of the person into a narrow and constricting mould" (George and Davis, 266) and circumscribes their sick role. Morris sees biomedicine as cultural discourse, specifically as a modernist narrative which is being challenged increasingly by "powerful alternative narratives that view human illness not as the malfunction of a biophysical mechanism but as the unique experience of a meaning-making and embodied cultural being" (7). Arthur Frank, Thomas Couser, Anne Hawkins and others have demonstrated how control of current understandings of illness is indeed moving away from medical practitioners and towards the patients themselves as they challenge the restriction and passivity of their sick role. The work of these researchers charts changing representations of illness as patients who choose to publish their narratives attempt to find meaning in their experience of illness. The narratives these people tell are often at odds with the biomedical accounts of their illness, or at least they are telling a different type of story - one that involves their reaction to and their experience of serious illness rather than just its onset, diagnosis, treatment and prognosis. These stories are sometimes triumphal accounts of overcoming illness, designed to inspire others in similar situations; sometimes dark, emotional accounts of overwhelming adversity and suffering. In providing such introspections of the meaning of illness for the patient's life (and even anticipations of death too), these texts re-negotiate the sick role. They are empowering accounts because they disrupt the sense of the sick role as a passive and silent state (Frank 3). The stories can be found in full length autobiographical accounts of encounters with serious illness like those discussed by Frank, Couser, and also Hawkins, but they are evident across a range of the mass media as well. Women's magazines are a particularly rich source where illness experiences of celebrities and ordinary folk are mixed in with other gossip, scandal, features and advice (Bonner and McKay 2000). Reality television shows (for example, those set in hospitals) also occasionally feature patients' experiences and their quest for meaning for their illness. While the internet offers unprecedented access to detailed medical information, dedicated sites also provide spaces for patients to tell their stories and chat rooms give the opportunity for patient-patient access and interaction in the absence of doctors. These electronic "virtual" communities provide new interactive forums for those with chronic conditions to discuss their fears, their needs and their activities (Patsos; Hardey). The texts produced by these media constitute a different version of the sick role and augment the meanings of illness by providing alternative or at least parallel resources to conventional medical interaction for those who are ill, their carers or those with vicarious interest. As Foucault demonstrated, medical knowledge, its associated "clinical gaze" and the representation of illness always need to be seen in its socio-historical context. The understanding of this "provides a perspective which is able to show, as does the cross-cultural perspective offered by anthropology, that the conventions of western biomedicine are no more 'scientific' or 'objective' than medical systems in other cultures or in other times" (Lupton 15). This type of approach does not necessarily call into question the medical definitions of disease, but points out the limitations of biomedicine without due attention to more cultural approaches. In that sense, the proliferation of patients' stories should be seen as a reaction to (rather than a rejection of) biomedicine and its modernist perspective that situates illness more in the professional domain of the doctor than in the experiential domain of the patient. Indeed, as Morris notes, "modernist biomedicine with its dualistic and reductive language of disease mechanisms now co-exists uneasily with a new concern (irreducible to mechanisms) for the role played in illness by minds, emotions, and social processes" (7). References Bonner, F., & S.McKay. "Challenges, Determination and Triumphs: Inspirational Discourse in Women's Magazine Health Stories." Continuum: Journal of Media and Cultural Studies 14.2 (2000): 133-144. Christopoulos, Katerina. "The Sick Role in Literature and Society." Journal of the American Medical Association 285.1 (3 January 2001): 93. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. Dubos, René. "Mirage of Health". Health and Disease. Ed. Nick Black. Milton Keynes: Open University Press, 1984. 4-9. Eisenberg, Leon, and Arthur Kleinman. "Clinical Social Science." The Relevance of Social Science for Medicine. Ed. Leon Eisenberg and Arthur Kleinman. Dordrecht: Reidel, 1981. 1-23. Engel, George. "The Need for a New Medical Model: A Challenge for Biomedicine." Science 196.4268 (8 April 1977): 129-36. Foucault, Michel. The Birth of the Clinic : An Archaeology of Medical Perception. Trans. A.M. Sheridan Smith. London: Tavistock, 1973. Frank, Arthur. "Reclaiming an Orphan Genre: The First-Person Narrative of Illness." Literature and Medicine 13.1 (Spring 1994): 1-21. George, Janet, and Alan David. States of Health: Health and Illness in Australia 3rd ed. South Melbourne: Addison Wesley Longman, 1998. Hardey, Michael. "Doctor in the House: The Internet as a Source of Lay Knowledge and the Challenge to Expertise." Sociology of Health and Illness 21.6 (1999): 820-835. Hawkins, Anne. Reconstructing Illness: Studies in Pathography. West Layfayette: Purdue University Press, 1993. Lupton, Deborah. Medicine as Culture: Illness, Disease and the Body in Western Societies. London: Sage, 1994. Morgan, Myfanwy, Michael Calnan, and Nick Manning. Sociological Approaches to Health and Medicine. London: Routledge, 1985. Morris, David. "How to Speak Postmodern: Medicine, Illness, and Cultural Change." The Hastings Center Report 30.6 (2000): 7-11. Parsons, Talcott. The Social System. Glencoe, Ill.: Free Press, 1951. Patsos, Mary. "The Internet and Medicine: Building a Community for Patients with Rare Diseases." Journal of the American Medical Association 285.6 (14 February 2001): 805.

If you have a look at the concert schedules around Australia (and elsewhere in the Western world) these days, you could be forgiven for thinking that you've suddenly been transported back in time: there is a procession of old players, playing (mainly) old songs. The Rolling Stones came through a while ago, as did the Eagles, Creedence Clearwater Revival's John Fogerty, and James Brown. Jimmy Page and Robert Plant played updated versions of Led Zeppelin's music, with some new songs strewn in on occasion. The Beach Boys served up a double blast from the past, touring with America ("Horse with No Name") as their opening act. Australian content in this trend is provided by the odd assortment of media darling John Farnham, ex-Grease girl Olivia Newton-John, and former Phantom of the Opera Anthony Warlow, who are touring under the unlikely name of 'The Main Event'; Australian rock legends Cold Chisel have also reformed recently, with a reunion tour to follow. On the more prestigious end of the pop mainstream, The Three Tenors have only had one concert in Australia recently, but publicity-savvy as they have proven themselves to be during the Football World Cup it's a fairly safe bet that they'll be rolling into Sydney Opera House in time for the last Olympics of this millennium, in the year 2000. Thankfully, we've so far been spared of a remaining-Beatles reunion and tour (they did release their Anthology CDs and videos, though), but it wouldn't really come as a surprise anymore. Why this wave of musical exhumations; why now? Admittedly, some of the reunions produced interesting results (Page & Plant's update of Led Zeppelin songs with world music elements comes to mind), but largely the bands involved have restricted themselves to playing old favourites or producing new music that is content with plagiarising older material, and so it's unlikely that the Beach Boys are touring, for example, because they have a strong desire to take surf music to the next level of art. A better explanation, it seems, can be found in the music industry and its structures, and in the way those structures are increasingly becoming inadequate for today's mediascape. For much of this century, popular music in the Western world -- while music itself is a global obsession, the marketing industry largely remains dominated by the West -- has come in waves: to give a broad overview, jazz was outdone by rock'n'roll, which was followed by the British invasion and the British blues revival, leading to the stadium rock of the 1970s (co-existing with disco), which in turn caused the punk revolution that fizzled out into New Wave and the new romantics, which were superseded by Alternative Rock and Britpop. Looking at this succession, it's not difficult to see that the waves have become smaller over time, though: recent styles have failed by far to reach the heights of interest and influence that earlier waves like rock'n'roll and the British invasion achieved. How many people will remember, say, Oasis in three decades; how many will The Beatles? The question seems unfair. This gradual decrease in wave amplitude over the years is directly linked to changes in the media structure in the Western world: earlier, new musical waves swept the few available channels of radio and TV to their full extent; severe bandwidth limitations forced the broadcasters to divert their entire attention to the latest trends, with no air time to be spared for the music of yesteryear. As the number of channels increased, however, so did the potential for variety; today, most cities of sufficient size at least have stations catering for listeners of classical music, over-40s easy listening, mainstream rock, and alternative rock, and perhaps there's also an open-access channel for the more obscure styles; stations for more specific tastes -- all-jazz, all-heavy metal, all-goth -- are now also viable in some cities. As new style waves come in, they might still sweep through the mainstream stations, but will only manage to cause some minor ripples amongst the less central channels. Similar trends exist among music stores, and the music press. The mainstream might remain in the middle of the musical spectrum, therefore, but it's been narrowed considerably, with more and more music fans moving over to the more specialised channels. There is now "an increasingly fragmented international marketplace of popular musics" (Campbell Robinson et al. 272). In media-rich Western nations, this trend is strengthened further by changes to the mediascape brought on by the Internet: the Net is the ultimate enpander of bandwidth, where anyone can add another channel if their needs aren't met by the existing ones. With an unlimited number of specialised channels, with fans deciding their musical diet for themselves instead of having radio DJs or music journalists do it for them, and with the continued narrowing of the mainstream as it loses more and more listeners, new waves of musical styles lose their impact almost immediately now. Whatever your specific tastes, you'll find like-minded people, specialty labels and CD retailers, perhaps even an Internet radio station -- there is now less need than ever to engage with outside trends. Whether that development is entirely desirable remains a point of debate, of course. The paradox for the big old players in the music industry is that the ongoing globalisation of their markets hasn't also led to a globalisation of musical tastes -- largely because of this exponential increase and diversification of channels. Music is a powerful instrument of community formation, and community formation implies first and foremost a drawing of boundaries to everything that isn't part of the community (Turner 2): as musical styles diversify, therefore, there are now more musical taste communities than anyone would care to list. Instead of turning to some mainstreamed, global style of music, listeners are found to turn to the local -- either to the music produced geographically local to them, or to a form of virtually local music, that is, the music of a geographically dispersed, but (through modern communications technologies) otherwise highly unified taste community (Bruns sect. 1 bite 8ff.). There certainly are more such groupings than the industry would care to cater for: the division of their resources in order to follow musical trends in a large number of separate communities is eating into the profits of the large multinationals, while small specialty labels are experiencing a resurgence (despite the major labels' attempts to discourage them). As Wallis & Malm note, "the transformation of the business side of the music industry into a number of giant concerns has not stopped small enterprises, often run by enthusiasts, from cropping up everywhere" (270). The large conglomerates are remarkably ill-prepared to deal with such a plurality of styles: everything in their structure is crying out for a unified market with few, major, and tightly controlled trends. This is where we (and the industry) return to the Beach Boys & Co., then. Partly out of a desire for the good old times when the music business was simple, partly to see if a revival of the old marketing concepts may not reverse the tide once more, the industry majors have unleashed this procession of the musical undead (with only a few notable exceptions) upon us; it is a last-stand attempt to regather the remaining few servicable battleships of the mainstream fleet to grab whatever riches are still to be found there. Judging by ticket prices alone (Page & Plant charged over A$110 per head), there still is money to be made, but these prices also indicate that such 'mainstream' acts are now largely a spectacle for well-to-do over-35s. Amongst younger audiences, the multinationals remain mostly clueless, despite a few efforts to create massively hyped, but musically lobotomised lowest-common-denominator acts, from the Spice Girls to Céline Dion or U2. Most of the acts the major industry players cling to as their main attractions have quite simply lost relevance to all but the most gullible of audiences -- in this context, the advertisment of the travelling Farnham / Newton-John / Warlow show as 'The Main Event' seems almost touching in its denial of reality. It's not like the industry hasn't tried this strategy before, of course: reacting to the fragmented musical world of the early 1970s, with styles from folk to hard rock all equally vying for a share of the audience, the labels created stadium rock -- oversized concerts of overproduced bands who eventually became alienated from their audiences, causing the radical back-to-the-roots revolution of punk. Stadium rock mark II is bound to fail even more quickly and decisively: with most of its proponents not even creating any excitement in the all-important 'young adults' market in the first place, it's the wave that wasn't, and should properly be seen as the best sign yet of the industry's loss of touch with its fragmenting market(s). It's time for new, smaller, and more mobile players to take over from the multinationals, it seems. References Bruns, Axel. "'Every Home Is Wired': The Use of Internet Discussion Fora by a Subcultural Community." 1998. 17 Dec. 1998 <http://www.uq.net.au/~zzabruns/uni/honours/thesis.php>. Campbell Robinson, Deanna, et al. Music at the Margins: Popular Music and Global Cultural Diversity. Newbury Park, Calif.: Sage, 1991. Wallis, Roger, and Krister Malm. Big Sounds from Small Peoples: The Music Industry in Small Countries. London: Constable, 1984. Turner, Graeme. "Rock Music, National Culture and Cultural Policy." Rock Music: Politics and Policy. Ed. Tony Bennett. Brisbane: Institute for Cultural Policy Studies, Griffith U, 1988. 1-6. Citation reference for this article MLA style: Axel Bruns. "Old Players, New Players: The Main Event That Isn't." M/C: A Journal of Media and Culture 1.5 (1998). [your date of access] <http://www.uq.edu.au/mc/9812/main.php>. Chicago style: Axel Bruns, "Old Players, New Players: The Main Event That Isn't," M/C: A Journal of Media and Culture 1, no. 5 (1998), <http://www.uq.edu.au/mc/9812/main.php> ([your date of access]). APA style: Axel Bruns. (1998) Old players, new players: the Main Event that isn't. M/C: A Journal of Media and Culture 1(5). <http://www.uq.edu.au/mc/9812/main.php> ([your date of access]).

Photo by Hédi Benyounes on Unsplash ABSTRACT The current incarceration facilities for the growing number of women are depriving expecting mothers of adequate care crucial for the child’s mental and physical development. Programs need to be established to counteract this. INTRODUCTION Currently, Diana Sanchez was eight months pregnant when she was arrested for identity theft and put in a prison cell in Denver. At five a.m., two weeks after being incarcerated, she announced to a deputy outside her cell that she was going into labor. Footage from a camera in her cell shows her pacing anxiously or writhing in her bed for the five hours preceding the arrival of her son. She banged on the door and begged for help. All she received was an absorbent pad. She gave birth alone in her prison cell on July 31, 2015, around 10:45 am. At 11:00 am, a prison nurse walked in to cut the umbilical cord and take Sanchez’s newborn baby without offering postnatal care. Sanchez was later sent to a hospital, and her baby was separated from her until she was put on probation. In 2018, on behalf of her three-year-old son, Sanchez sued Denver Health and Denver Sheriff Department and won a $480,000 settlement.[1] Though many more men are incarcerated than women, the rate of growth of female incarceration has exceeded that of male incarceration for decades. One study estimated that 231,000 women are currently incarcerated in the US,[2] 80 percent of whom are mothers, and 150,000 pregnant.[3] Another recent study of 1,396 incarcerated pregnant women found that 92 percent had live births, 6.5 percent had stillbirths or miscarriages, and 4 percent terminated the pregnancy. The authors found that there is no system of reporting pregnancy outcomes in US prisons. There is a noteworthy ethical lapse in mental, emotional, and medical care that threatens the well-being of pregnant women in prison. According to Carolyn Sufrin, “Pregnant incarcerated people are one of the most marginalized and forgotten groups in our country… and women who don't get counted don't count.” [4] Poor documentation, visibility, and transparency contribute to the systemic abuse of incarcerated women. Studies document women giving birth alone in cells and shackles in solitary confinement. Their complaints regarding contractions, bleeding, and other pains of labor are often ignored.[5] l. Prenatal Care in American Prisons Diana Sanchez was not offered any prenatal care after she was incarcerated. And neither she nor her son received appropriate postnatal care.[6] Sanchez was on medication for opioid withdrawal while pregnant, which could have been detrimental to her baby’s health.[7] There is an unacceptable absence of pre- and postnatal care in most US prisons. A lack of regulation makes the availability of perinatal care unpredictable and unreliable. Several studies confirmed that there is not a standard for prenatal care for women incarcerated during pregnancy. [8] Knowledge of the appropriate mental and physical care pregnant women require, addiction support, and support for maternal-infant bonding all exists outside the prison system and ought to be used as a benchmark. At the very least, pregnant women, birthing women, and new mothers should not be placed in solitary confinement or shackled.[9] In the prenatal arena, depriving an individual of adequate healthcare is not appropriate and could be cruel and unusual. Only 18 percent of funding in prisons goes to health care for the prisoners. That is roughly $5.7 thousand per prisoner, according to an NIH study done in 2015.[10] There should be an adequate amount of funding for the health needs of incarcerated pregnant women. By depriving pregnant women of healthcare, the prisons are depriving the fetus of adequate care. ll. Respect for Autonomy During Incarceration Women maintain healthcare autonomy even when incarcerated. The purpose of a prison sentence is retribution for crimes and rehabilitation to prevent reoffending.[11] The separation of a mother and newborn causes significant developmental and psychological harm to the child and the parent. Parent-child separation does not serve the purpose of retribution or rehabilitation and is authorized only due to prisons’ limited space and resources that make it difficult to accommodate children, as well as a state interest in children’s best interests or the custody rights of the other parent. When it is possible to keep a family together, prisons should make every effort to do so for the health of the mother-child relationship. Incarcerated people may become a burden to family or society due to prison medical neglect. For example, diabetes and hypertension, which can occur during pregnancy, can worsen without treatment. The inability to access the care they would otherwise want and need endangers women and poses a burden to the healthcare system after incarceration, Depersonalizing individuals convicted of crimes must be placed in the context of historical eugenics practices. State-sanctioned sterilization and efforts to prevent women from reproducing were widespread during the early 20th century.[12] Cases of coerced and nonconsensual sterilization of incarcerated women and men evidence the history of eugenics.[13]Abortions are offered to some incarcerated women.[14] However, many incarcerated women are denied the right to see healthcare providers to thoroughly discuss abortion or other options.[15] Although the abortions are consensual, the quality of consent is questionable. lll. Prison Nursery Programs, “I need something to live for…” Indiana Women’s Prison (IWP), a max security female prison, has a program called Wee Ones that enables women convicted of nonviolent crimes to spend 30 months bonding with their newborn child. It is one of eight programs in the country that allows pregnant mothers to spend the last few months of their sentence with their children. It is a voluntary program that allows pregnant offenders a private room in a housing unit. It offers parent education, resources that are accessible after release, and career education. The program application process and the rules to which women must adhere to remain in the program are stringent. The programs generally have a zero-tolerance policy. Even simply sleeping in the same bed as the child or arguing with other mothers can result in termination from the program. Kara, a pregnant woman incarcerated for drug possession, had a history of abuse in her family and tended to act out in anger against her peers in the program. She was learning how to have healthy reactions to anger when handling her child, but her temper ultimately led to her removal from the program. Her son was placed in foster care, and Kara returned to the regular cells. In an interview before her transfer, she told the camera that Charlie gave her a purpose. With tears in her eyes, she said, “Charlie was my way of life here [...] I need something to live for [,] and I screwed up.”[16] Pregnancy in prison can be a way to improve quality of life for some women. Studies demonstrate that nursery programs improve mental health of the incarcerated women.[17] The secure attachment of the infant to its primary caregiver promotes healthy development in the child and a bonded relationship with the mother.[18] The close bond between mother and child in prisons has been shown to decrease recidivism and to reduce the burden on the foster care system.[19] Women who do not qualify for these programs, or are incarcerated in prisons without them, are separated from their newborn babies and their other children. The disconnect can lead to the child rejecting the incarcerated mother once she is released.[20] Programs like Wee Ones honor women’s autonomy while they are incarcerated. During interviews, the women expressed that although raising a child in that environment is difficult, it was better than not being with their children. While rocking a baby in her lap, one inmate expressed her frustrations with Wee Ones but then paused to express gratitude and said, “After all, it’s prison. And prison ain’t supposed to be nice.”[21] The ethical issue of autonomy reflects a more difficult dilemma in the prison landscape. lV. Counter Arguments: Do the Nursery Programs Work for the Children and the Women Typically, newborns are taken from their incarcerated mothers within two to three days of birth and sent to live with a relative or placed in foster care. Many women are never reunited with their babies. There is much debate over whether the programs are beneficial to the children. One ethical issue is whether children, as innocents, are being punished either by being in the prison system or by being separated from their mothers. Skeptics, like James Dwyer, have argued against keeping innocent babies in the custody of incarcerated mothers asserting that there is little evidence demonstrating that the programs rehabilitate the women.[22] Dwyer commented on the “reckless” hopefulness the programs provide: "It might, in fact, be the babies distract them from rehabilitation they should be doing instead. […] They're so focused on childcare and have this euphoria — they think they'll be just fine when they get out of prison and they're not. We just don't know."[23] One study showed that 58 percent of incarcerated women are arrested again after release, 38 percent are reconvicted, and 30 percent return to prison within three years.[24] Dwyer uses this data to argue that the programs are not worthwhile. However, the data is not limited to the special population that had the prison nursery experience. The data applies to all incarcerated women limiting its applicability. More importantly, there is compelling evidence to support prison nursery programs.[25] The programs do decrease recidivism[26] and prison misconduct,[27] and they allow women to create stronger bonds with their children.[28] Bev Little argues that allowing mothers to bond with their babies only delays the inevitable separation and will cause trauma and have other ill effects on the baby. [29] But others feel that stronger maternal-fetal attachment is best for both parties. There is evidence that the bond, once formed, is long-lasting. Later in life, there is less drug addiction among children who stayed in the nursery rather than being separated from their mothers.[30] Another counterargument is that the policies in prison nurseries are not as useful for motherhood outside of the facility; thus, an issue with recidivism occurs because the women are less prepared for motherhood upon release from prison. Prison nursery programs establish methods and procedures for successful motherhood that are unique to operation within correctional environments. Yet, fortunately, parenting classes offered by prisons and jails emphasize sacrifice, self-restraint, and dedicated attention to the baby. These classes aptly apply to motherhood outside of prison.[31] One incarcerated mother experiencing addiction, Kima, was described as ambivalent toward her pregnancy. “It’s something about knowing but not knowing that makes me not accountable or makes me think I’m not accountable,” Kima shared.[32] After the nurse confirmed her pregnancy, she acknowledged fear and knew she would be held accountable to the baby. The occurrence of pregnancy ambivalence is common.[33] A study of a population of prisoners from Rhode Island found that 41 percent of the women expressed ambivalent attitudes about pregnancy. 70 of the women from a population in San Francisco expressed ambivalent or negative attitudes towards pregnancy.[34] But the ambivalence of some women toward pregnancy is not a reason to prevent women who feel differently from reaping the full benefits of programs that support them during pregnancy. Another counterargument is that prison is becoming a comfort that women might seek if they are homeless or housing insecure. For example, Evelyn was released from a San Francisco jail after being arrested for using cocaine. She was 26 weeks pregnant and had a four-year-old son in the custody of her aunt. Following her release, she was homeless and using drugs in the streets. She felt that her only hope of keeping her baby safe was to go back to jail. Like Kima, she had been in and out of jail from a young age. She grew accustomed to and dependent on the care provided there. While incarceration can provide a home and a nursery, there is no ethical reason to argue for making prison less comfortable by separating babies and children from incarcerated women. Instead, these facts suggest we are not doing enough for women outside prisons either. CONCLUSION Many experts stress the dearth of research and information on these women and their babies. There is no empirical data to show how big the problem is, but there is evidence that programs providing nursery care for the children of incarcerated women have many benefits. Because the research is not largescale enough, many pregnant women in the prison system are ignored. Many women give birth in unacceptable conditions, and their children are taken from them the moment the umbilical cord is cut. While the US incarcerates too many women, a movement to expand prison nurseries could help new mothers bond with their children. Strong educational programs could aid in lowering the rates of recidivism by providing therapeutic resources for mothers.[35] There is a growing problem of mass incarceration in the US as many women are placed in correctional facilities. Most of these women are convicted of possession or use of illegal substances.[36] Many women come from disadvantaged backgrounds, poverty, and have experienced addiction. Depriving an expectant mother of adequate care is cruel and irresponsible both to the mother and her innocent child. The criminal justice system is harming children both mentally and physically. Reform of the system is needed to provide the basic care those children need. Programs like IWP’s Wee Ones are necessary for physical, psychological, and social development. A program that offers a place for mothers to raise their babies in the community of other mothers would incentivize and facilitate healthy parental habits. Further programs for mothers who are released from prison would give them valuable resources to keep them from returning and encourage healthy relationships between the mother and the baby. - [1] Li, D. K. Video allegedly shows woman giving birth in Denver jail cell alone, with no assistance. Denver: NBC News, 2019. [2] Kajstura, Aleks. “Women's Mass Incarceration: The Whole Pie 2019.” Prison Policy Initiative, 29 Oct. 2019, https://www.prisonpolicy.org/reports/pie2019women.html. (“Including those in prisons, jails, and other correctional facilities.”) [3] Swavola, E, K Riley and R Subramanian. "Overlooked: Women and Jails in an Era of Reform." Vera Institute of Justice August 2016. [4] Sufrin, C. Pregnant Behind Bars: What We Do and Don't Know About Pregnancy and Incarceration Allison Chang. 21 March 2019. Transcript. [5] Sufrin, C., 2019. (Suffrin expressed that she had seen such practices firsthand working as an OB/GYN for incarcerated women.) [6] Padilla, M. “Woman Gave Birth in Denver Jail Cell Alone, Lawsuit Says,” New York Times, Sep. 1, 2019. [7] Li, D. “Video allegedly shows woman giving birth in Denver jail cell alone, with no assistance,” NBC U.S. News, Apr. 29. 2019. [8] Knittel, A. and C. Sufrin. "Maternal Health Equity and Justice for Pregnant Women Who Experience Incarceration." JAMA Network Open 3.8 (2020). A study in Ontario, Canada, coincided with a study done in Australia. [9] Sufrin, C., et al. "Pregnancy Outcomes in US Prisons, 2016–2017." p. 803-804. [10] Sridhar, S., R. Cornish and S. Fazel. "The Costs of Healthcare in Prison and Custody: Systematic Review of Current Estimates and Proposed Guidelines for Future Reporting." Frontiers in Psychiatry 9.716 (2018). [11] Kifer, M., Hemmens, C., Stohr, M. K. “The Goals of Corrections: Perspectives from the Line” Criminal Justice Review. 1 May 2003 [12] Perry, D. M. "Our Long, Troubling History of Sterilizing the Incarcerated." The Marshall Project: Sterilization of Women in Prison 26 July 2017. [13] Rachel Roth & Sara L. Ainsworth, If They Hand You a Paper, You Sign It: A Call to End the Sterilization of Women in Prison, 26 Hastings WOMEN's L.J. 7 (2015); See Skinner v. Oklahoma ex rel. Williamson, 316 U.S. 535 (1942) (procreation considered a fundamental right; fact pattern of male sterilization in prison based on type of crime.) [14] Sufrin, C., M. D. Creinin, J. C. Chang. “Incarcerated Women and Abortion Provision: A Survey of Correctional Health Providers.” Perspectives on Sexual and Reproductive Health. p. 6-11. 23 March 2009. [15] Kasdan, D. “Abortion Access for Incarcerated Women: Are Correctional Health Practices in Conflict with Constitutional Standards?” Guttmacher Institute. 26 March 2009. [16] Born Behind Bars. Season 1, Episode 5, “They Can Take Your Baby Away,” produced by Luke Ellis, Francis Gasparini, & Jen Wise, aired on 15 Nov. 2017 A&E Networks [17] Bick, J., & Dozier, M. (2008). Helping Foster Parents Change: The Role of Parental State of Mind. In H. Steele & M. Steele (Eds.), Clinical applications of the Adult Attachment Interview (pp. 452–470). New York: Guilford Press. [18]Sroufe, L. A., B. Egeland, E. A. Carlson, W. A. Collins. (2005). The Development of the Person: The Minnesota Study of Risk and Adaptation from Birth to Adulthood. New York: Guilford Press. [19] Goshin, L. S., & Byrne, M. W. “Converging Streams of Opportunity for Prison Nursery Programs in the United States.” Journal of Offender Rehabilitation. 15 Apr 2009. [20] Babies Behind Bars. Dirs. W. Serrill and S. O'Brien. 2015. Another IWP pregnant woman is Taylor. At the time of the show, she was pregnant and expecting twins. In interviews throughout the episode, she expressed how her pregnancies in prison had put her in a better mood and felt beneficial to her. She had tried to sign up for the nursery program for her previous pregnancy, but her sentence was too long to get it. Her child was sent to live with a caregiver, and when Taylor was on probation, Taylor’s daughter didn’t want to be around Taylor. Taylor was so distraught that she messed up and went back, this time, pregnant with twins. After she was reincarcerated, she was able to be accepted into Wee Ones. She expressed to the camera man that the program might help her feel more like a mother so that when she gets out, she will have someone to care for. Taylor, Kara, and many other women depend on their children or their pregnancy for a purpose while behind bars. They relied on their babies to be a boon for them. [21] Babies Behind Bars. Dirs. W. Serrill and S. O'Brien. 2015. [22] Corley, C. "Programs Help Incarcerated Moms Bond with Their Babies in Prison." Criminal Justice Collaborative (2018). [23] Corley, C. "Programs Help Incarcerated Moms Bond with Their Babies in Prison." Criminal Justice Collaborative (2018). [24] Owen, B. & Crow, J. “Recidivism among Female Prisoners: Secondary Analysis of the 1994 BJS Recidivism Data Set” Department of Criminology California State University (2006) p. 28 [25] Prison Nursery Programs: Literature Review and Fact Sheet for CT. Diamond Research Consulting, 2012, www.cga.ct.gov/2013/JUDdata/tmy/2013HB-06642-R000401-Sarah Diamond - Director, Diamond Research Consulting-TMY.PDF. [26] New York Department of Correction Services (NYDOCS). (1993). Profile of Participants: The Bedford and Taconic Nursery Program in 1992. Albany, NY. Department of Correction Services.Rowland, M., & Watts, A. (2007). Washington State’s effort to the generational impact on crime. Corrections Today. Retrieved September 12, 2007, from http://www. aca.org/publications/pdf/Rowland_Watts_Aug07.pdf. [27] Carlson, J. R. (2001). Prison nursery 2000: A five-year review of the prison nursery at the Nebraska Correctional Center for Women. Journal of Offender Rehabilitation, 33, 75–97. [28] Carlson, J.R. [29] Little, B. "What Happens When a Woman Gives Birth Behind Bars?" A+E Networks, 29 October 2019. <https://www.aetv.com/real-crime/what-happens-when-a-woman-gives-birth-in-jail-or-prison>. [30] Margolies, J. K., & Kraft-Stolar, T. When “Free” Means Losing Your Mother: The Collision of Child Welfare and the Incarceration of Women in New York State 1, 9 (Correctional Association of N.Y. Women in Prison Project 2006) [31] Sufrin, C. Jailcare: Finding the Safety Net for Women Behind Bars. Berkeley: University of California Press, 2017. [32] Sufrin, C. Jailcare: p. 155. [33] Peart, M. S. & Knittel, A. K. “Contraception need and available services among incarcerated women in the United States: a systematic review.” Contraception and Reproductive Medicine. 17 March 2020 [34] LaRochelle, F., C. Castro, J. Goldenson, J. P. Tulsky, D.L. Cohan, P. D. Blumenthal, et al. “Contraceptive use and barriers to access among newly arrested women.” J Correct Health Care. (2012) p. 111–119. [35] Goshin, L., & Byrne, M. (2009). “Converging streams of opportunity for prison nursery programs in the United States.” Journal of Offender Rehabilitation. 2009. p.271–295. [36] Elizabeth Swavola, Kristine Riley, Ram Subramanian. Overlooked: Women and Jails in an Era of Reform. New York: Vera Institute of Justice, 2016.

Introduction Children are beginning to use digital technologies at younger and younger ages. The emerging trend of very young children (babies, toddlers and pre-schoolers) using Internet connected devices, especially touch screen tablets and smartphones, has elicited polarising opinions from early childhood experts. At present there is little actual research about the risks or benefits of tablet and smartphone use by very young children. Current usage recommendations, based on research into passive television watching which claims that screen time is detrimental, is in conflict with advice from education experts and app developers who commend interactive screen time as engaging and educational. Guidelines from the health professions typically advise strict time limits on very young children’s screen-time. Based for the most part on policy developed by the American Academy of Paediatrics, it is usually recommended that children under two have no screen time at all (Brown), and children over this age have no more than two hours a day (Strasburger, et al.). On the other hand, early childhood education guidelines promote the development of digital literacy skills (Department of Education). Further, education-based research indicates that access to computers and the Internet in the preschool years is associated with overall educational achievement (Bittman et al.; Cavanaugh et al; Judge et al; Neumann). The US based National Association for Education of Young Children’s position statement on technology for zero to eight year-olds declares that “when used intentionally and appropriately, technology and interactive media are effective tools to support learning and development” (NAEYC). This article discusses the notion of Digitods—a name for those children born since the introduction of the iPhone in 2007 who have ready access to touchscreen technologies since birth. It reports on the limited availability of evidence-based research about these children’s ICT use concluding that current research and recommendations are not grounded in the everyday life of very young children and their families. The article then reports on the beginnings of a research project funded by the Australian Research Council entitled Toddlers and Tablets: exploring the risks and benefits 0-5s face online. This research project recognises that at this stage it is parents who “are the real experts in their toddlers’ use of screen technologies. Accordingly, the project’s methodological approach draws on parents, pre-schoolers and their families as communities of practice in the construction of social meaning around toddlers’ use of touch screen technology. Digitods In 2000 Bill Gates introduced the notion of Generation I to describe the first cohort of children raised with the Internet as a reality in their lives. They are those born after the 1990s and will, in most cases; have no memory of life without the Net. [...] Generation I will be able to conceive of the Internet’s possibilities far more profoundly than we can today. This new generation will become agents of change as the limits of the Internet expand to include educational, scientific, and business applications that we cannot even imagine. (Gates)Digitods, on the other hand, is a term that has been used in education literature (Leathers et al.) to describe those children born after the introduction of the iPhone in 2007. These children often begin their lives with ready access to the Internet via easily usable touch screen devices, which could have been designed with toddlers’ touch and swipe movements in mind. Not only are they the youngest group of children to actively engage with the Internet they are the first group to grow up with a range of mobile Internet devices (Leathers et al.). The difference between Digitods and Gates’s Generation I is that Digitods are the first pre-verbal, non-ambulant infants to have ready access to digital technologies. Somewhere around the age of 10 months to fourteen months a baby learns to point with his or her forefinger. At this stage the child is ready to swipe and tap a touch screen (Leathers et al.). This is in contrast to laptops and PCs given that very young children often need assistance to use a mouse or keyboard. The mobility of touch screen devices allows very young children to play at the kitchen table, in the bedroom or on a car trip. These mobile devices have, of course, a myriad of mobile apps to go with them. These apps create an immediacy of access for infants and pre-schoolers who do not need to open a web browser to find their favourite sites. In the lives of these children it seems that it has always been possible to touch and swipe their way into games, books and creative and communicative experiences (Holloway et al. 149). The interactivity of most pre-school apps, as opposed to more passive screen activities such as watching television shows or videos (both offline or online), requires toddlers and pre-schoolers to pay careful attention, think about things and act purposefully (Leathers et al.). It is this interactivity which is the main point of difference, one which holds the potential to engage and educate our youngest children. It should be noted within this discussion about Digitods that, while the trope Digital Natives tends to homogenise an entire generation, the authors do not assume that all children born today are Digitods by default. Many children do not have the same privileged opportunities as others, or the (parental) cultural capital, to enable access, ease of use and digital skill development. In addition to this it is not implied that Digitods will be more tech savvy than their older siblings. The term is used more to describe and distinguish those children who have digital access almost since birth—in order to differentiate or tease out everyday family practices around these children’s ICT use and the possible risks and benefits this access affords babies, toddlers and pre-schoolers. While the term Digital Native has also been criticised as being a white middle class phenomenon this is not necessarily the case with Digitods. In the Southeast Asia and the Pacific region developed countries like Japan, Korea, New Zealand and Singapore have extremely high rates of touchscreen use by very young children (Child Sciences; Jie; Goh; Unantenne). Other countries such as the Philippines and Indonesia have moved to a high smart phone usage by very young children while at the same time have only nascent ICT access and instruction within their education systems (Unantenne). The Digitod Parent Parents of Digitods are usually experienced Internet users themselves, and many are comfortable with their children using these child-friendly touch screen devices (Findahl). Digital technologies are integral to their everyday lives, often making daily life easier and improving communication with family and friends, even during the high pressure parenting years of raising toddlers and pre-schoolers. Even though many parents and caregivers are enabling very young children’s use of touch screen technologies, they are also concerned about the changes they are making. This is because very young children’s use of touch screen devices “has become another area where they fear possible criticism and in which their parental practices risk negative evaluation by others” (Holloway et al). The tensions between expert advice regarding young children’s screen-time and parents’ and caregivers’ own judgments are also being played out online. Parenting blogs, online magazines and discussion groups are all joining in the debate: On the one hand, parents want their children to swim expertly in the digital stream that they will have to navigate all their lives; on the other hand, they fear that too much digital media, too early, will sink them. Parents end up treating tablets like precision surgical instruments, gadgets that might perform miracles for their child’s IQ and help him win some nifty robotics competition—but only if they are used just so. (Rosin)Thus, with over 80 000 children’s apps marketed as educational in the Apple App Store alone, parents can find it difficult to choose apps that are worth purchasing (Yelland). Nonetheless, recent research regarding Australian children shows that three to five year olds who access touch screen devices will typically have five or more specific apps to choose from (5.23 on average) (Neumann). With little credible evidence or considered debate, parents have been left to make their own choices about the pros and cons of their young children’s access to touch screens. Nonetheless, one immediate benefit that comes to mind is toddlers and pre-schoolers video chatting with dispersed family member—due to increased globalisation, guest worker arrangements, FIFO (fly-in fly-out) workforces and family separation or divorce. Such clear benefits around sociability and youngsters’ connection with significant others make previous screen-related guidelines out of date and no longer contextually relevant. Little Research Attention Family ownership of tablet devices as well as touch screen phones has risen dramatically in the last five years. With very young children being loaned these technologies by mum or dad, and a tendency in Australia to rely on market-orientated research regarding ownership and usage, there is very little knowledge about touch screen usage rates for very young Australian children. UK and US usage figures indicate that over the last few years there has been a five-fold increase in tablet uptake by zero to eight year olds (Ofcom; Rideout). Although large scale, comparative Australian data is not available, previous research regarding older children indicates that Australia is similar to high use countries like some Scandinavian nations and the UK (Green et al.). In addition to this, two small research projects in Australia, with under 160 participant families each, indicate that two thirds of these children (0-5) use touchscreen devices (Neumann; Coenenna et. al.). Beyond usage figures, there is also very limited evidence-based research about very young children’s app use. Interactive technologies available via touch screen technologies have been available domestically for a very short time. Consequently, “valid scientific research has not been completed and replicated due to [the lack of] available time” (Leathers el al. 129) and longitudinal studies which rely on an intervention group (in this case exposure to children’s apps) and a control group (no exposure) are even fewer and more time-consuming. Interestingly, researchers have revisited the issue of passive screen viewing. A recent 2015 review of previous 2007 research, which linked babies watching videos with poor language development, has found that there was statistical and methodological issues with the 2007 study and that there are no strong inferences to be drawn between media exposure and language development (Ferguson and Donellan). Thus, there seems to be no conclusive evidence-based research on which to inform parents and educators about the possible downside or benefits of touch screen use. Nonetheless, early childhood experts have been quick to weigh in on the possible effects of screen usage, some providing restrictive guidelines and recommendations, with others advocating the use of interactive apps for very young children for their educational value. This knowledge-gap disguises what is actually happening in the lives of real Australian families. Due to the lack of local data, as well as worldwide research, it is essential that Australian researchers obtain a comprehensive understanding about actual behaviour around touch screen use in the lives of children aged between zero and five and their families. Beginning Research While research into very young children’s touch screen use is beginning to take place, few results have been published. When researching two to three year olds’ learning from interactive versus non-interactive videos Kirkorian, Choi and Pempek found that “toddlers may learn more from interactive media than from non-interactive video” (Kirkorian et al). This means that the use of interactive apps on touch screen devices may hold a greater potential for learning than passive video or television viewing for children in this age range. Another study considered the degree to which the young children could navigate to and use apps on touch screen devices by observing and analysing YouTube videos of infants and young children using touch screens (Hourcade et al.). It was found that between the ages of 12 months and 17 months the children filmed seemed to begin to “make meaningful use of the tablets [and] more than 90 per cent of children aged two [had] reached this level of ability” (1923). The kind of research mentioned above, usually the preserve of psychologists, paediatricians and some educators, does not, however, ground very young children’s use in their domestic context—in the spaces and with those people with whom most touch screen usage takes place. With funding from the Australian Research Council Australian, Irish and UK researchers are about to adopt a media studies (domestication) approach to comprehensively investigate digital media use in the everyday lives of very young children. This Australian-based research project positions very young children’s touch screen use within the family and will help provide an understanding of the everyday knowledge and strategies that this cohort of technology users (very young children and their parents) have already developed—in the knowledge vacuum left by the swift appropriation and incorporation of these new media technologies into the lives of families with very young children. Whilst using a conventional social constructionist perspective, the project will also adopt a co-creation of knowledge approach. The co-creation of knowledge approach (Fong) has links with the communities of practice literature (Wegner) and recognises that parents, care-givers and the children themselves are the current experts in this field in terms of the everyday uses of these technologies by very young children. Families’ everyday discourse and practices regarding their children’s touch screen use do not necessarily work through obvious power hierarchies (via expert opinions), but rather through a process of meaning making where they shape their own understandings and attitudes through experience and shared talk within their own everyday family communities of practice. This Toddlers and Tablets research is innovative in many ways. It seeks to capture the enthusiasm of young children’s digital interactions and to pioneer new ways of ‘beginnings’ researching with very young children, as well as with their parents. The researchers will work with parents and children in their broad domestic contexts (including in and out-of-home activities, and grandparental and wider-family involvement) to co-create knowledge about young children’s digital technologies and the social contexts in which these technologies are used. Aspects of these interactions, such as interviews and observations of everyday digital interactions will be recorded (audio and video respectively). In addition to this, data collected from media commentary, policy debates, research publications and learned articles from other disciplinary traditions will be interrogated to see if there are correlations, contrasts, trends or synergies between parents’ construction of meaning, public commentary and current research. Critical discourse tools and methods (Chouliaraki and Fairclough) will be used to analyse verbatim transcripts, video, and all written materials. Conclusion Very young children are uniquely dependent upon others for the basic necessities of life and for the tools they need, and will need to develop, to claim their place in the world. Given the ubiquitous role played by digital media in the lives of their parents and other caregivers it would be a distortion of everyday life for children to be excluded from the technologies that are routinely used to connect with other people and with information. In the same way that adults use digital media to renew and strengthen social and emotional bonds across distance, so young children delight in ‘Facetime’ and other technologies that connect them audio-visually with friends and family members who are not physically co-present. Similarly, a very short time spent in the company of toddlers using touch screens is sufficient to demonstrate the sheer delight that these young infants have in developing their sense of agency and autonomy (https://www.youtube.com/watch?v=aXV-yaFmQNk). Media, communications and cultural studies are beginning to claim a space for evidence based policy drawn from everyday activities in real life contexts. Research into the beginnings of digital life, with families who are beginning to find a way to introduce these technologies to the youngest generation, integrating them within social and emotional repertoires, may prove to be the start of new understandings into the communication skills of the preverbal and preliterate young people whose technology preferences will drive future development – with their parents likely trying to keep pace. Acknowledgment This research is supported under Australia Research Council’s Discovery Projects funding scheme (project number DP150104734). References Bittman, Michael, et al. "Digital Natives? New and Old Media and Children's Outcomes." Australian Journal of Education 55.2 (2011): 161-75. Brown, Ari. "Media Use by Children Younger than 2 Years." Pediatrics 128.5 (2011): 1040-45. Burr, Vivien. Social Constructionism. 2nd ed. London: Routledge, 2003. Cavanaugh, Cathy, et al. 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"Is the Association between Children’s Baby Video Viewing and Poor Language Development Robust? A Reanalysis of Zimmerman, Christakis, and Meltzoff (2007)." Developmental Psychology 50.1 (2014): 129. Findahl, Olle. Swedes and the Internet 2013. Stockholm: The Internet Infrastructure Foundation, 2013. Fong, Patrick S.W. "Co-Creation of Knowledge by Multidisciplinary Project Teams." Management of Knowledge in Project Environments. Eds. E. Love, P. Fong, and Z. Irani. Burlington, MA: Elsevier, 2005. 41-56. Gates, Bill. "Enter 'Generation I': The Responsibility to Provide Access for All to the Most Incredible Learning Tool Ever Created." Instructor 109.6 (2000): 98. Goh, Wendy W.L., Susanna Bay, and Vivian Hsueh-Hua Chen. "Young School Children’s Use of Digital Devices and Parental Rules." Telematics and Informatics 32.4 (2015): 787-95. Green, Lelia, et al. 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1909–22: Turkey exterminated over 1.5 million of its ethnically Armenian, and hundreds of thousands of its ethnically Greek and Assyrian, citizens. Most died in 1915. This period of decimation in now widely called the Armenian Genocide (Balakian 179-80).1910: Siamanto first published his poem, The Dance: “The corpses were piled as trees, / and from the springs, from the streams and the road, / the blood was a stubborn murmur.” When springs run red, when the dead are stacked tree-high, when “everything that could happen has already happened,” then time is nothing: “there is no future [and] the language of civilised humanity is not our language” (Nichanian 142).2007: In my novel The Edge of the World a ceramic bowl, luminous blue, recurs as motif. Imagine you are tiny: the bowl is broken but you don’t remember breaking it. You’re awash with tears. You sit on the floor, gather shards but, no matter how you try, you can’t fix it. Imagine, now, that the bowl is the sky, huge and upturned above your head. You have always known, through every wash of your blood, that life is shockingly precarious. Silence—between heartbeats, between the words your parents speak—tells you: something inside you is terribly wrong; home is not home but there is no other home; you “can never be fully grounded in a community which does not share or empathise with the experience of persecution” (Wajnryb 130). This is the stubborn murmur of your body.Because time is nothing, this essay is fragmented, non-linear. Its main characters: my mother, grandmother (Hovsanna), grandfather (Benyamin), some of my mother’s older siblings (Krikor, Maree, Hovsep, Arusiak), and Mustafa Kemal Ataturk (Ottoman military officer, Young Turk leader, first president of Turkey). 1915–2013: Turkey invests much energy in genocide denial, minimisation and deflection of responsibility. 24 April 2012: Barack Obama refers to the Medz Yeghern (Great Calamity). The use of this term is decried as appeasement, privileging political alliance with Turkey over human rights. 2003: Between Genocide and Catastrophe, letters between Armenian-American theorist David Kazanjian and Armenian-French theorist Marc Nichanian, contest the naming of the “event” (126). Nichanian says those who call it the Genocide are:repeating every day, everywhere, in all places, the original denial of the Catastrophe. But this is part of the catastrophic structure of the survivor. By using the word “Genocide”, we survivors are only repeating […] the denial of the loss. We probably cannot help it. We are doing what the executioner wanted us to do […] we claim all over the world that we have been “genocided;” we relentlessly need to prove our own death. We are still in the claws of the executioner. We still belong to the logic of the executioner. (127)1992: In Revolution and Genocide, historian Robert Melson identifies the Armenian Genocide as “total” because it was public policy intended to exterminate a large fraction of Armenian society, “including the families of its members, and the destruction of its social and cultural identity in most or all aspects” (26).1986: Boyajian and Grigorian assert that the Genocide “is still operative” because, without full acknowledgement, “the ghosts won’t go away” (qtd. in Hovannisian 183). They rise up from earth, silence, water, dreams: Armenian literature, Armenian homes haunted by them. 2013: My heart pounds: Medz Yeghern, Aksor (Exile), Anashmaneli (Indefinable), Darakrutiun (Deportation), Chart (Massacre), Brnagaght (Forced migration), Aghed (Catastrophe), Genocide. I am awash. Time is nothing.1909–15: Mustafa Kemal Ataturk was both a serving Ottoman officer and a leader of the revolutionary Young Turks. He led Ottoman troops in the repulsion of the Allied invasion before dawn on 25 April at Gallipoli and other sites. Many troops died in a series of battles that eventually saw the Ottomans triumph. Out of this was born one of Australia’s founding myths: Australian and New Zealand Army Corps (ANZACs), courageous in the face of certain defeat. They are commemorated yearly on 25 April, ANZAC Day. To question this myth is to risk being labelled traitor.1919–23: Ataturk began a nationalist revolution against the occupying Allies, the nascent neighbouring Republic of Armenia, and others. The Allies withdrew two years later. Ataturk was installed as unofficial leader, becoming President in 1923. 1920–1922: The last waves of the Genocide. 2007: Robert Manne published A Turkish Tale: Gallipoli and the Armenian Genocide, calling for a recontextualisation of the cultural view of the Gallipoli landings in light of the concurrence of the Armenian Genocide, which had taken place just over the rise, had been witnessed by many military personnel and widely reported by international media at the time. Armenian networks across Australia were abuzz. There were media discussions. I listened, stared out of my office window at the horizon, imagined Armenian communities in Sydney and Melbourne. Did they feel like me—like they were holding their breath?Then it all went quiet. Manne wrote: “It is a wonderful thing when, at the end of warfare, hatred dies. But I struggle to understand why Gallipoli and the Armenian Genocide continue to exist for Australians in parallel moral universes.” 1992: I bought an old house to make a home for me and my two small children. The rooms were large, the ceilings high, and behind it was a jacaranda with a sturdy tree house built high up in its fork. One of my mother’s Armenian friends kindly offered to help with repairs. He and my mother would spend Saturdays with us, working, looking after the kids. Mum would stay the night; her friend would go home. But one night he took a sleeping bag up the ladder to the tree house, saying it reminded him of growing up in Lebanon. The following morning he was subdued; I suspect there were not as many mosquitoes in Lebanon as we had in our garden. But at dinner the previous night he had been in high spirits. The conversation had turned, as always, to politics. He and my mother had argued about Turkey and Russia, Britain’s role in the development of the Middle East conflict, the USA’s roughshod foreign policy and its effect on the world—and, of course, the Armenian Genocide, and the killingof Turkish governmental representatives by Armenians, in Australia and across the world, during the 1980s. He had intimated he knew the attackers and had materially supported them. But surely it was the beer talking. Later, when I asked my mother, she looked at me with round eyes and shrugged, uncharacteristically silent. 2002: Greek-American diva Diamanda Galas performed Dexifiones: Will and Testament at the Perth Concert Hall, her operatic work for “the forgotten victims of the Armenian and Anatolian Greek Genocide” (Galas).Her voice is so powerful it alters me.1925: My grandmother, Hovsanna, and my grandfather, Benyamin, had twice been separated in the Genocide (1915 and 1922) and twice reunited. But in early 1925, she had buried him, once a prosperous businessman, in a swamp. Armenians were not permitted burial in cemeteries. Once they had lived together in a big house with their dozen children; now there were only three with her. Maree, half-mad and 18 years old, and quiet Hovsep, aged seven,walked. Then five-year-old aunt, Arusiak—small, hungry, tired—had been carried by Hovsanna for months. They were walking from Cilicia to Jerusalem and its Armenian Quarter. Someone had said they had seen Krikor, her eldest son, there. Hovsanna was pregnant for the last time. Together the four reached Aleppo in Syria, found a Christian orphanage for girls, and Hovsanna, her pregnancy near its end, could carry Arusiak no further. She left her, promising to return. Hovsanna’s pains began in Beirut’s busy streets. She found privacy in the only place she could, under a house, crawled in. Whenever my mother spoke of her birth she described it like this: I was born under a stranger’s house like a dog.1975: My friend and I travelled to Albany by bus. After six hours we were looking down York Street, between Mount Clarence and Mount Melville, and beyond to Princess Royal Harbour, sapphire blue, and against which the town’s prosperous life—its shopfronts, hotels, cars, tourists, historic buildings—played out. It took away my breath: the deep harbour, whaling history, fishing boats. Rain and sun and scudding cloud; cliffs and swells; rocky points and the white curves of bays. It was from Albany that young Western Australian men, volunteers for World War I, embarked on ships for the Middle East, Gallipoli, sailing out of Princess Royal Harbour.1985: The Australian Government announced that Turkey had agreed to have the site of the 1915 Gallipoli landings renamed Anzac Cove. Commentators and politicians acknowledged it as historic praised Turkey for her generosity, expressed satisfaction that, 70 years on, former foes were able to embrace the shared human experience of war. We were justifiably proud of ourselves.2005: Turkey made her own requests. The entrance to Albany’s Princess Royal Harbour was renamed Ataturk Channel. A large bronze statue of Ataturk was erected on the headland overlooking the Harbour entrance. 24 April 1915: In the town of Hasan Beyli, in Cilicia, southwest Turkey, my great grandfather, a successful and respected businessman in his 50s, was asleep in his bed beside his wife. He had been born in that house, as had his father, grandfather, and all his children. His brother, my great uncle, had bought the house next door as a young man, brought his bride home to it, lived there ever since; between the two households there had been one child after another. All the cousins grew up together. My great grandfather and great uncle had gone to work that morning, despite their wives’ concerns, but had returned home early. The women had been relieved to see them. They made coffee, talked. Everyone had heard the rumours. Enemy ships were massing off the coast. 1978: The second time in Albany was my honeymoon. We had driven into the Goldfields then headed south. Such distance, such beautiful strangeness: red earth, red rocks; scant forests of low trees, thin arms outstretched; the dry, pale, flat land of Norseman. Shimmering heat. Then the big, wild coast.On our second morning—a cool, overcast day—we took our handline to a jetty. The ocean was mercury; a line of cormorants settled and bobbed. Suddenly fish bit; we reeled them in. I leaned over the jetty’s side, looked down into the deep. The water was clear and undisturbed save the twirling of a pike that looked like it had reversed gravity and was shooting straight up to me. Its scales flashed silver as itbroke the surface.1982: How could I concentrate on splicing a film with this story in my head? Besides the desk, the only other furniture in the editing suite was a whiteboard. I took a marker and divided the board into three columns for the three generations: my grandparents, Hovsanna and Benyamin; my mother; someone like me. There was a lot in the first column, some in the second, nothing in the third. I stared at the blankness of my then-young life.A teacher came in to check my editing. I tried to explain what I had been doing. “I think,” he said, stony-faced, “that should be your third film, not your first.”When he had gone I stared at the reels of film, the white board blankness, the wall. It took 25 years to find the form, the words to say it: a novel not a film, prose not pictures.2007: Ten minutes before the launch of The Edge of the World, the venue was empty. I made myself busy, told myself: what do you expect? Your research has shown, over and over, this is a story about which few know or very much care, an inconvenient, unfashionable story; it is perfectly in keeping that no-one will come. When I stepped onto the rostrum to speak, there were so many people that they crowded the doorway, spilled onto the pavement. “I want to thank my mother,” I said, “who, pretending to do her homework, listened instead to the story her mother told other Armenian survivor-women, kept that story for 50 years, and then passed it on to me.” 2013: There is a section of The Edge of the World I needed to find because it had really happened and, when it happened, I knew, there in my living room, that Boyajian and Grigorian (183) were right about the Armenian Genocide being “still operative.” But I knew even more than that: I knew that the Diaspora triggered by genocide is both rescue and weapon, the new life in this host nation both sanctuary and betrayal. I picked up a copy, paced, flicked, followed my nose, found it:On 25 April, the day after Genocide memorial-day, I am watching television. The Prime Minister stands at the ANZAC memorial in western Turkey and delivers a poetic and moving speech. My eyes fill with tears, and I moan a little and cover them. In his speech he talks about the heroism of the Turkish soldiers in their defence of their homeland, about the extent of their losses – sixty thousand men. I glance at my son. He raises his eyebrows at me. I lose count of how many times Kemal Ataturk is mentioned as the Father of Modern Turkey. I think of my grandmother and grandfather, and all my baby aunts and uncles […] I curl over like a mollusc; the ache in my chest draws me in. I feel small and very tired; I feel like I need to wash.Is it true that if we repeat something often enough and loud enough it becomes the truth? The Prime Minister quotes Kemal Ataturk: the ANZACS who died and are buried on that western coast are deemed ‘sons of Turkey’. My son turns my grandfather’s, my mother’s, my eyes to me and says, It is amazing they can be so friendly after we attacked them.I draw up my knees to my chest, lay my head and arms down. My limbs feel weak and useless. My throat hurts. I look at my Australian son with his Armenian face (325-6).24 April 1915 cont: There had been trouble all my great grandfather’s life: pogrom here, massacre there. But this land was accustomed to colonisers: the Mongols, the Persians, latterly the Ottomans. They invade, conquer, rise, fall; Armenians stay. This had been Armenian homeland for thousands of years.No-one masses ships off a coast unless planning an invasion. So be it. These Europeans could not be worse than the Ottomans. That night, were my great grandfather and great uncle awoken by the pounding at each door, or by the horses and gendarmes’ boots? They were seized, each family herded at gunpoint into its garden, and made to watch. Hanging is slow. There could be no mistakes. The gendarmes used the stoutest branches, stayed until they were sure the men weredead. This happened to hundreds of prominent Armenian men all over Turkey that night.Before dawn, the Allies made landfall.Each year those lost in the Genocide are remembered on 24 April, the day before ANZAC Day.1969: I asked my mother if she had any brothers and sisters. She froze, her hands in the sink. I stared at her, then slipped from the room.1915: The Ottoman government decreed: all Armenians were to surrender their documents and report to authorities. Able-bodied men were taken away, my grandfather among them. Women and children, the elderly and disabled, were told to prepare to walk to a safe camp where they would stay for the duration of the war. They would be accompanied by armed soldiers for their protection. They were permitted to take with them what they could carry (Bryce 1916).It began immediately, pretty young women and children first. There are so many ways to kill. Months later, a few dazed, starved survivors stumbled into the Syrian desert, were driven into lakes, or herded into churches and set alight.Most husbands and fathers were never seen again. 2003: I arrived early at my son’s school, parked in the shade, opened The Silence: How Tragedy Shapes Talk, and began to read. Soon I was annotating furiously. Ruth Wajnryb writes of “growing up among innocent peers in an innocent landscape” and also that the notion of “freedom of speech” in Australia “seems often, to derive from that innocent landscape where reside people who have no personal scars or who have little relevant historical knowledge” (141).1984: I travelled to Vancouver, Canada, and knocked on Arusiak’s door. Afraid she would not agree to meet me, I hadn’t told her I was coming. She was welcoming and gracious. This was my first experience of extended family and I felt loved in a new and important way, a way I had read about, had observed in my friends, had longed for. One afternoon she said, “You know our mother left me in an orphanage…When I saw her again, it was too late. I didn’t know who they were, what a family was. I felt nothing.” “Yes, I know,” I replied, my heart full and hurting. The next morning, over breakfast, she quietly asked me to leave. 1926: When my mother was a baby, her 18 year-old sister, Maree, tried to drown her in the sea. My mother clearly recalled Maree’s face had been disfigured by a sword. Hovsanna, would ask my mother to forgive Maree’s constant abuse and bad behaviour, saying, “She is only half a person.”1930: Someone gave Hovsanna the money to travel to Aleppo and reclaim Arusiak, by then 10 years old. My mother was intrigued by the appearance of this sister but Arusiak was watchful and withdrawn. When she finally did speak to my then five-year-old mother, she hissed: “Why did she leave me behind and keep you?”Soon after Arusiak appeared, Maree, “only half a person,” disappeared. My mother was happy about that.1935: At 15, Arusiak found a live-in job and left. My mother was 10 years old; her brother Hovsep, who cared for her before and after school every day while their mother worked, and always had, was seventeen. She adored him. He had just finished high school and was going to study medicine. One day he fell ill. He died within a week.1980: My mother told me she never saw her mother laugh or, once Hovsep died, in anything other than black. Two or three times before Hovsep died, she saw her smile a little, and twice she heard her singing when she thought she was alone: “A very sad song,” my mother would say, “that made me cry.”1942: At seventeen, my mother had been working as a live-in nanny for three years. Every week on her only half-day off she had caught the bus home. But now Hovsanna was in hospital, so my mother had been visiting her there. One day her employer told her she must go to the hospital immediately. She ran. Hovsanna was lying alone and very still. Something wasn’t right. My mother searched the hospital corridors but found no-one. She picked up a phone. When someone answered she told them to send help. Then she ran all the way home, grabbed Arusiak’s photograph and ran all the way back. She laid it on her mother’s chest, said, “It’s all right, Mama, Arusiak’s here.”1976: My mother said she didn’t like my boyfriend; I was not to go out with him. She said she never disobeyed her own mother because she really loved her mother. I went out with my boyfriend. When I came home, my belongings were on the front porch. The door was bolted. I was seventeen.2003: I read Wajnryb who identifies violent eruptions of anger and frozen silences as some of the behaviours consistent in families with a genocidal history (126). 1970: My father had been dead over a year. My brothers and I were, all under 12, made too much noise. My mother picked up the phone: she can’t stand us, she screamed; she will call an orphanage to take us away. We begged.I fled to my room. I couldn’t sit down. I couldn’t keep still. I paced, pressed my face into a corner; shook and cried, knowing (because she had always told us so) that she didn’t make idle threats, knowing that this was what I had sometimes glimpsed on her face when she looked at us.2012: The Internet reveals images of Ataturk’s bronze statue overlooking Princess Royal Harbour. Of course, it’s outsized, imposing. The inscription on its plinth reads: "Peace at Home/ Peace in the World." He wears a suit, looks like a scholar, is moving towards us, a scroll in his hand. The look in his eyes is all intensity. Something distant has arrested him – a receding or re-emerging vision. Perhaps a murmur that builds, subsides, builds again. (Medz Yeghern, Aksor, Aghed, Genocide). And what is written on that scroll?2013: My partner suggested we go to Albany, escape Perth’s brutal summer. I tried to explain why it’s impossible. There is no memorial in Albany, or anywhere else in Western Australia, to the 1.5 million victims of the Armenian Genocide. ReferencesAkcam, Taner. “The Politics of Genocide.” Online Video Clip. YouTube. YouTube, 11 Dec. 2011. 6 Mar. 2013 ‹http://www.youtube.com/watchv=OxAJaaw81eU&noredirect=1genocide›.Balakian, Peter. The Burning Tigress: The Armenian Genocide. London: William Heinemann, 2004.BBC. “Kemal Ataturk (1881–1938).” BBC History. 2013. 6 Mar. 2013 ‹http://www.bbc.co.uk/history/historic_figures/ataturk_kemal.shtml›.Boyajian, Levon, and Haigaz Grigorian. “Psychological Sequelae of the Armenian Genocide.”The Armenian Genocide in Perspective. Ed. Richard Hovannisian. New Brunswick: Transaction, 1987. 177–85.Bryce, Viscount. The Treatment of the Armenians in the Ottoman Empire. London: Hodder and Stoughton, 1916.Galas, Diamanda. Program Notes. Dexifiones: Will and Testament. Perth Concert Hall, Perth, Australia. 2001.———.“Dexifiones: Will and Testament FULL Live Lisboa 2001 Part 1.” Online Video Clip. YouTube, 5 Nov. 2011. Web. 6 Mar. 2013 ‹http://www.youtube.com/watch?v=mvVnYbxWArM›.Kazanjian, David, and Marc Nichanian. “Between Genocide and Catastrophe.” Loss. Eds. David Eng and David Kazanjian. Los Angeles: U of California P, 2003. 125–47.Manne, Robert. “A Turkish Tale: Gallipoli and the Armenian Genocide.” The Monthly Feb. 2007. 6 Mar. 2013 ‹http://www.themonthly.com.au/turkish-tale-gallipoli-and-armenian-genocide-robert-manne-459›.Matiossian, Vartan. “When Dictionaries Are Left Unopened: How ‘Medz Yeghern’ Turned into a Terminology of Denial.” The Armenian Weekly 27 Nov. 2012. 6 Mar. 2013 ‹http://www.armenianweekly.com/2012/11/27/when-dictionaries-are-left-unopened-how-medz-yeghern-turned-into-terminology-of-denial/›.Melson, Robert. Revolution and Genocide. Chicago: U of Chicago P, 1996.Nicholson, Brendan. “ASIO Detected Bomb Plot by Armenian Terrorists.” The Australian 2 Jan. 2012. 6 Mar. 2013 ‹http://www.theaustralian.com.au/in-depth/cabinet-papers/asio-detected-bomb-plot-by-armenian-terrorists/story-fnbkqb54-1226234411154›.“President Obama Issues Statement on Armenian Remembrance Day.” The Armenian Weekly 24 Apr. 2012. 5 Mar. 2013 ‹http://www.armenianweekly.com/2012/04/24/president-obama-issues-statement-on-armenian-remembrance-day/›.Polain, Marcella. The Edge of the World. Fremantle: Fremantle Press, 2007.Siamanto. “The Dance.” Trans. Peter Balakian and Nervart Yaghlian. Adonias Dalgas Memorial Page 5 Mar. 2013 ‹http://www.terezakis.com/dalgas.html›.Stockings, Craig. “Let’s Have a Truce in the Battle of the Anzac Myth.” The Australian 25 Apr. 2012. 6 Mar. 2013 ‹http://www.theaustralian.com.au/national-affairs/opinion/lets-have-a-truce-in-the-battle-of-the-anzac-myth/story-e6frgd0x-1226337486382›.Wajnryb, Ruth. The Silence: How Tragedy Shapes Talk. Crows Nest: Allen and Unwin, 2001.

IntroductionThis article addresses the experience of designing and conducting life-writing workshops for a group of clients with severe mental illness; the aim of this pilot study was to begin to determine whether such writing about the self can aid in individual ‘recovery’, as that term is understood by contemporary health professionals. A considerable amount has been written about the potential of creative writing in mental health therapy; the authors of this article provide a brief summary of that literature, then of the concept of ‘recovery’ in a psychology and arts therapy context. There follows a first-hand account by one of the authors of being an arts therapy workshop facilitator in the role of a creative practitioner. This occurred in consultation with, and monitored by, experienced mental health professionals. Life-Writing as ‘Therapeutic’ Life-story or life-writing can be understood in this context as involving more than disclosure or oral expression of a subject’s ‘story’ as in psycho-therapy – life-story is understood as a written, structured narrative. In 2001, Wright and Chung published a review of the literature in which they claimed that writing therapy had been “restimulated by the development of narrative approaches” (278). Pennebaker argues that “catharsis or the venting of emotions” without “cognitive processing” has little therapeutic value and people need to “build a coherent narrative that explains some past experience” in order to benefit from writing” (Pennebaker, Telling Stories 10–11). It is claimed in the Clinical Psychology Review that life-writing has the therapeutic benefits of, for example, “striking physical health and behaviour change” (Esterling et al. 84). The reasons are still unclear, but it is possible that the cognitive and linguistic processing of problematic life-events through narrative writing may help the subject assimilate such problems (Alschuler 113–17). As Pennebaker and Seagal argue in the Journal of Clinical Psychology, the life-writing processallows one to organise and remember events in a coherent fashion while integrating thoughts and feelings ... This gives individuals a sense of predictability and control over their lives. Once an experience has structure and meaning, it would follow that the emotional effects of that experience are more manageable. (1243)It would seem reasonable to suggest that life-writing which constructs a positive recovery narrative can have a positive therapeutic effect, providing a sense of agency, connectedness and creativity, in a similar, integrating manner. Humans typically see their lives as stories. Paul Eakin stresses the link between narrative and identity in both this internal life-story and in outwardly constructed autobiography:narrative is not merely a literary form but a mode of phenomenological and cognitive self-experience, while self – the self of autobiographical discourse - does not necessarily precede its constitution in narrative. (Making Selves 100)So both a self-in-time and a socially viable identity may depend on such narrative. The term ‘dysnarrativia’ has been coined to describe the documented inability to construct self-narrative by those suffering amnesia, autism, severe child abuse or brain damage. The lack of ability to achieve narrative construction seems to be correlated with identity disorders (Eakin, Fictions in Autobiography 124). (For an overview of the current literature on creative and life-writing as therapy see Murphy & Neilsen). What is of particular relevance to university creative writing practitioners/teachers is that there is evidence, for example from Harvard psychiatrist Judith Herman and creative writing academic Vicki Linder, that life-narratives are more therapeutically effective if guided to be written according to fundamental ‘effective writing’ aesthetic conventions – such as having a regard to coherent structure in the narrative, the avoidance of cliché, practising the ‘demonstrate don’t state’ dictum, and writing in one’s own voice, for example. Defining ‘Recovery’There remains debate as to the meaning of recovery in the context of mental health service delivery, but there is agreement that recovery entails significantly more than symptom remission or functional improvement (Liberman & Kopelowicz). In a National Consensus Statement, the Substance Abuse and Mental Health Services Administration (SAMHSA) unit of the US Department of Health and Human Services in 2005 described recovery (in general terms) as being achieved by the enabling of a person with a mental illness to live meaningfully in a chosen community, while also attempting to realize individual potential. ‘Recovery’ as a central concept behind rehabilitation can be understood both as objective recovery – that is, in terms of noting a reduction in objective indicators of illness and disability (such as rates of hospital usage or unemployment) and a greater degree of social functioning – and also as subjective recovery. Subjective recovery can be ascertained by listening closely to what clients themselves have said about their own experiences. It has been pointed out (King, Lloyd & Meehan 2) that there is not always a correspondence between objective indicators of recovery and the subjective, lived experience of recovery. The experience of mental illness is not just one of symptoms and disability but equally importantly one of major challenge to sense of self. Equally, recovery from mental illness is experienced not just in terms of symptoms and disability but also as a recovery of sense of self … Recovery of sense of self and recovery with respect to symptoms and disability may not correspond. (King, Lloyd & Meehan; see also Davidson & Strauss)Symptoms of disability can persist, but a person can have a much stronger sense of self or empowerment – that is still recovery. Illness dislocates the sense of self as part of a community and of a self with skills and abilities. Restoring this sense of empowerment is an aim of arts therapy. To put it another way, recovery is a complex process by which a client with a mental illness develops a sense of identity and agency as a citizen, as distinct from identification with illness and disability and passivity as a ‘patient’. The creative arts have gone well beyond being seen as a diversion for the mentally ill. In a comprehensive UK study of creative arts projects for clients with mental illness, Helen Spandler et al. discovered strong evidence that participation in creative activity promoted a sense of purpose and meaning, and assisted in “rediscovering or rebuilding an identity within and beyond that of someone with mental health difficulties” (795). Recovery is aided by people being motivated to achieve self-confidence through mastery and competence; by learning and achieving goals. Clearly this is where arts therapy could be expected or hoped to be effective. The aim of the pilot study was not to measure ‘creativity’, but whether involvement in what is commonly understood as a creative process (life-writing) can have flow-on benefits in terms of the illness of the workshop participant. The psychologists involved, though more familiar with visual arts therapy (reasonably well-established in Australia – in 2006, the ANZAT began publishing the Australian and New Zealand Journal of Art Therapy), thought creative writing could also be valuable. Preparation for and Delivery of the Workshops I was acutely aware that I had no formal training in delivering a program to clients with mental health illness. I was counselled during several meetings with experienced psychologists and a social worker that the participants in the three workshops over two weeks would largely be people who had degrees of difficulty in living independently, and could well have perceptual problems, could misjudge signals from outside and inside the group, and be on medication that could affect their degree of engagement. Some clients could have impaired concentration and cognition, and a deficit in volition. Participants needed to be free to leave and rejoin the workshops during the afternoon sessions. Attendance might well fall as the workshops progressed. Full ethical clearance was attained though the University of Queensland medical faculty (after detailed description of the content and conduct of the proposed workshops) and consent forms prepared for participants. My original workshop ‘kit’ to be distributed to participants underwent some significant changes as I was counselled and prepared for the workshops. The major adjustment to my usual choice of material and approach was made in view of the advice that recounting traumatic events can have a negative effect on some patients – at least in the short term. For the sake of both the individuals and the group as a whole this was to be avoided. I changed my initial emphasis on encouraging participants to recount their traumatic experiences in a cathartic way (as suggested by the narrative psychology literature), to encouraging them to recount positive narratives from their lives – narratives of ‘recovery’ – as I explain in more detail below. I was also counselled that clients with mental health problems might dwell on retelling their story – their case history – rather than reflecting upon it or using their creative and imaginative ability to shape a life-story that was not a catalogue of their medical history. Some participants did demonstrate a desire to retell their medical history or narrative – including a recurring theme of the difficulty in gaining continuity with one trusted medical professional. I gently guided these participants back to fashioning a different and more creative narrative, with elements of scene creation, description and so on, by my first listening intently to and acknowledging their medical narrative for a few minutes and then suggesting we try to move beyond that. This simple strategy was largely successful; several participants commented explicitly that they were tired of having to retell their medical history to each new health professional they encountered in the hospital system, for example. My principal uncertainty was whether I should conduct the workshops at the same level of complexity that I had in the past with groups of university students or community groups. While in both of those cohorts there will often be some participants with mental health issues, for the most part this possibility does not affect the level or kind of content of material discussed in workshops. However, within this pilot group all had been diagnosed with moderate to severe mental illness, mostly schizophrenia, but also bipolar disorder and acute depression and anxiety disorders. The fact that my credentials were only as a published writer and teacher of creative writing, not as a health professional, was also a strong concern to me. But the clients readily accepted me as someone who knew the difficulty of writing well and getting published. I stressed to them that my primary aim was to teach effective creative writing as an end in itself. That it might be beneficial in health terms was secondary. It was a health professional who introduced me and briefly outlined the research aims of the workshop – including some attempt to measure qualitatively any possible benefits. It was my impression that the participants did not have a diminished sense of my usefulness because I was not a health professional. Their focus was on having the opportunity to practice creative writing and/or participate in a creative group activity. As mentioned above, I had prepared a workshop ‘kit’ for the participants of 15 pages. It contained the usual guidelines for effective writing – extracts from professional writers’ published work (including an extract from my own published work – a matter of equity, since they were allowing me to read their work), and a number of writing exercises (using description, concrete and abstract words, narrative point of view, writing in scenes, show don’t tell). The kit contained extracts from memoirs by Hugh Lunn and Bill Bryson, as well as a descriptive passage from Charles Dickens. An extract from Inga Clendinnen’s 2006 account in Agamemnon’s Kiss: selected essays of her positive interaction with fellow cancer patients (a narrative with the underlying theme of recovery) was also valuable for the participants. I stressed to the group that this material was very similar to that used with beginning writers among university students. I described the importance of life-writing as follows: Life-writing is simply telling a story from your life and perhaps musing or commenting on it at the same time. When you write a short account of something chosen from your life, you are making a pattern, using your memory, using your powers of description – you are being creative. You are being a story-teller. And story-telling is one very important thing that makes us humans different from all other animals – and it is a way in which we find a lot of meaning in our lives.My central advice in the kit was: “Just try to be as honest as you can – and to remember as well as you can … being honest and direct is both the best and the easiest way to write memoir”. The only major difference between my approach with these clients and that with a university class was in the selection of possible topics offered. In keeping with the advice of the psychologists who were experts in the theory of ‘recovery’, the topics were predominantly positive, though one or two topics gave the opportunity to recount and/or explore a negative experience if the participant wanted to do so: A time when I was able to help another personA time when I realised what really mattered in lifeA time when I overcame a major difficultyA time when I felt part of a group or teamA time when I knew what I wanted to do with my lifeA time when someone recognised a talent or quality of mineA time I did something that I was proud of A time when I learned something important to meA memorable time when I lived in a certain house or suburbA story that begins: “Looking back, I now understand that …”The group expressed satisfaction with these topics, though they had the usual writing students’ difficulty in choosing the one that best suited them. In the first two workshops we worked our way through the kit; in the third workshop, two weeks later, each participant read their own work to the group and received feedback from their peers and me. The feedback was encouraged to be positive and constructive, and the group spontaneously adopted a positive reinforcement approach, applauding each piece of writing. Workshop DynamicsThe venue for the workshops was a suburban house in the Logan area of Brisbane used as a drop-in centre for those with mental illness, and the majority of the participants would be familiar with it. It had a large, breezy deck on which a round-table configuration of seating was arranged. This veranda-type setting was sheltered enough to enable all to be heard easily and formal enough to emphasise a learning event was taking place; but it was also open enough to encourage a relaxed atmosphere. The week before the first workshop I visited the house to have lunch with a number of the participants. This gave me a sense of some of the participants’ personalities and degree of engagement, the way they related to each other, and in turn enabled them to begin to have some familiarity with me and ask questions. As a novice at working with this kind of client, I found this experience extremely valuable, especially as it suggested that a relatively high degree of communication and cognition would be possible, and it reduced the anxiety I had about pitching the workshops at an appropriate level. In the course of the first workshop, the most initially sceptical workshop participant ended up being the most engaged contributor. A highly intelligent woman, she felt it would be too upsetting to write about negative events, but ultimately wrote a very effective piece about the empowerment she gained from caring for a stray cat and locating the owner. Her narrative also expressed her realisation that the pet was partly a replacement for spending time with her son, who lived interstate. Another strong participant previously had written a book-length narrative of her years of misdiagnoses and trauma in the hospital system before coming under the care of her present health professionals. The participant who had the least literacy skills was accepted by the group as an equal and after a while contributed enthusiastically. Though he refused to sign the consent form at the outset, he asked to do so at the close of the first afternoon. The workshop was comprised of clients from two health provider organisations; at first the two groups tended to speak with those they already knew (as in any such situation in the broader community), but by the third workshop a sense of larger group identity was being manifested in their comments, as they spoke of what ‘the group’ would like in the future – such as their work being published in some form. It was clear that, as in a university setting, part of the beneficial effect of the workshops came from group and face to face interaction. It would be more difficult to have this dimension of benefit achieved via a web-based version of the workshops, though a chat room scenario would presumably go some way towards establishing a group feeling. Web-based delivery would certainly suit participants who lacked mobility or who lived in the regions. Clearly the Internet is a vital social networking tool, and an Internet-based version of the workshops could well be attempted in the future. My own previous experience of community digital storytelling workshops (Neilsen, Digital Storytelling as Life-writing) suggests that a high degree of technical proficiency can not be expected across such a cohort; but with adequate technical support, a program (the usual short, self-written script, recorded voice-over and still images scanned from the participants’ photo albums, etc) could make digital storytelling a further dimension of therapeutic life-writing for clients with mental illness. One of the most useful teaching techniques in a class room setting is the judicious use of humour – to create a sense of sharing a perspective, and simply to make material more entertaining. I tested the waters at the outset by referring to the mental health worker sitting in the background, and declaring (with some comic exaggeration) my concern that if I didn’t run the workshop well he would report adversely on me. There was general laughter and this expression of my vulnerability seemed to defuse anxiety on the part of some participants. As the workshop progressed I found I could use both humorous extracts of life-writing and ad hoc comic comments (never at the expense of a participant) as freely as in a university class. Participants made some droll comments in the overall context of encouraging one another in their contributions, both oral and written. Only one participant exhibited some temporary distress during one of the workshops. I was allowing another participant the freedom to digress from the main topic and the participant beside me displayed agitation and sharply demanded we get back to the point. I apologised and acknowledged I had not stayed as focused as I should and returned to the topic. I suspect I had a fortunate first experience of such arts therapy workshops – and that this was largely due to the voluntary nature of the study and that most of the participants brought a prior positive experience of the workshop scenario, and prior interest in creative writing, to the workshops. Outcomes A significantly positive outcome was that only one of the nine participants missed a session (through ill-health) and none left during workshops. The workshops tended to proceed longer than the three hours allotted on each occasion. Post-workshop interviews were conducted by a psychologist with the participants. Detailed data is not available yet – but there was a clear indication by almost all participants that they felt the workshops were beneficial and that they would like to participate in further workshops. All but one agreed to have their life-writing included in a newsletter produced by one of the sponsors of the workshops. The positive reception of the workshops by the participants has encouraged planning to be undertaken for a wide-ranging longitudinal study by means of a significant number of workshops in both life-writing and visual arts in more than one city, conducted by a team of health professionals and creative practitioners – this time with sophisticated measurement instruments to gauge the effectiveness of art therapy in aiding ‘recovery’. Small as the workshop group was, the pilot study seems to validate previous research in the UK and US as we have summarised above. The indications are that significant elements of recovery (in particular, feelings of enhanced agency and creativity), can be achieved by life-writing workshops that are guided by creative practitioners; and that it is the process of narrative construction within life-writing that engages with or enhances a sense of self and identity. NoteWe are indebted, in making the summary of the concept of ‘recovery’ in health science terms, to work in progress by the following research team: Robert King, Tom O'Brien and Claire Edwards (School of Medicine, University of Queensland), Margot Schofield and Patricia Fenner (School of Public Health, Latrobe University). We are also grateful for the generous assistance of both this group and Seiji Humphries from the Richmond Queensland Fellowship, in providing preparation for the workshops. ReferencesAlschuler, Mari. “Lifestories – Biography and Autobiography as Healing Tools for Adults with Mental Illness.” Journal of Poetry Therapy 11.2 (1997): 113–17.Davidson, Larry and John Strauss. “Sense of Self in Recovery from Severe Mental Illness.” British Journal of Medical Psychology 65 (1992): 31–45.Eakin, Paul. Fictions in Autobiography: Studies of the Art of Self-Invention. Princeton: Princeton UP, 1985.———. How Our Lives Become Stories: Making Selves. Ithaca: Cornell UP, 1999.Esterling, B.A., L. L’Abate., E.J. Murray, and J.W. Pennebaker. “Empirical Foundations for Writing in Prevention and Psychotherapy: Mental and Physical Health Outcomes.” Clinical Psychology Review 19.1 (1999): 79–96.Herman, Judith. Trauma and Recovery: The Aftermath of Violence - from Domestic Abuse to Political Terror. New York: Basic Books, 1992.King, Robert, Chris Lloyd, and Tom Meehan. Handbook of Psychosocial Rehabilitation. Oxford: Blackwell Publishing, 2007.Liberman, Robert, and Alex Kopelowicz. “Recovery from Schizophrenia: A Criterion-Based Definition.” In Ralph, R., and P. Corrigan (eds). Recovery in Mental Illness: Broadening Our Understanding of Wellness. Washington, DC: APA, 2005.Linder, Vicki. “The Tale of two Bethanies: Trauma in the Creative Writing Classroom.” New Writing: The International Journal for the Practice and Theory of Creative Writing 1.1 (2004): 6–14Murphy, Ffion, and Philip Neilsen. “Recuperating Writers – and Writing: The Potential of Writing Therapy.” TEXT 12.1 (Apr. 2008). ‹http://www.textjournal.com.au/april08/murphy_neilsen.htm›.Neilsen, Philip. “Digital Storytelling as Life-Writing: Self-Construction, Therapeutic Effect, Textual Analysis Leading to an Enabling ‘Aesthetic’ for the Community Voice.” ‹http://www.speculation2005.qut.edu.au/papers/Neilsen.pdf›.Pennebaker, James W., and Janel D. Seagal. “Forming a Story: The Health Benefits of Narrative.” Journal of Clinical Psychology, 55.10 (1999): 1243–54.Pennebaker, James W. “Telling Stories: The Health Benefits of Narrative.” Literature and Medicine 19.1 (2000): 3–18.Spandler, H., J. Secker, L. Kent, S. Hacking, and J. Shenton. “Catching Life: The Contribution of Arts Initiatives to ‘Recovery’ Approaches in Mental Health.” Journal of Psychiatric and Mental Health Nursing 14.8 (2007): 791–799.Wright, Jeannie, and Man Cheung Chung. “Mastery or Mystery? Therapeutic Writing: A Review of the Literature.” British Journal of Guidance and Counselling, 29.3 (2001): 277–91.

Introduction There are many competing explanations for why people are drawn to conspiracy theories. Increasingly, conspiracy theories are mainstream sites of cultural engagement (Barkun). Conspiracy theorising, then, is part of, or at least brushes up against, people’s daily sense-making practices. However, many still think of conspiracy theorising and the communities that form around them as deviant, pathological or deficient (Swami et al.). In this article, we argue that we need to shift from a model of a deficient and deviant understanding of conspiracy theorising to understand these practices as part of our everyday behavioural and social repertoires. We argue that part of this shift means attending to the sensory and felt experience of conspiracy thinking, as a bodily and affective experience, as a site of pleasure. Centring pleasure as an explanatory framework for conspiracy theorising does not foreclose other explanations. Rather we argue that pleasure operates as a broader explanatory framework within which these competing explanations can also offer insight. We do not aim to provide an empirical account of the #FreeBritney movement in this article, but instead use it as an example through which we can begin to develop pleasure as a potential explanatory framework for understanding conspiracy theorising. To argue for the centrality of ‘pleasure’ in conspiracy theories, we draw on scholarship from fandom studies to ask, “What can the ‘Free Britney’ movement tell us about the pleasures of conspiracy?” We pay particular attention to how conspiracy theorising can be understood as a site of pleasure and, at times, hope, which in turn transform conspiracy theories into ‘sticky’ cultural sites (Ahmed). The centring of pleasure as a driver of conspiracy theorising also points to possible alternative approaches to countering the affective pull of conspiracy theories. Why #FreeBritney? This article focusses on the #FreeBritney community as an example for several reasons. #FreeBritney sits outside many of the political concerns that often characterise conspiracy theories; that is, it is neither left nor right in its orientation. Additionally, #FreeBritney was initially written off as nonsense by mainstream media outlets and commentators. For example, in the first version of TikToker Abbie Richards’s viral chart that categorises conspiracy theories, #FreeBritney is in the same category as UFOs and not something that ‘actually happened’ (Richards), meaning Richards did not believe the central claim of the #FreeBritney movement, that Britney wished to end an abusive conservatorship, was real. Similar coverage was evident in other press, including by Maria Sherman for Jezebel, which describes the #FreeBritney theory as “dubiously sourced” and as “mak[ing] gargantuan assumptions about mental health without much concrete evidence” (Sherman). Despite the derision, #FreeBritney persisted, and the claims made in the initial, instigating episode of Britney’s Gram (a fan-created podcast) have been borne in court, affirmed by Spears herself, and in numerous pieces of investigative reporting (Stark and Day). The #FreeBritney Context So, how did we get to #FreeBritney? In early 2008, after a string of increasingly erratic public appearances, Britney Spears was placed into a conservatorship arrangement. Conservatorships are typically reserved for the elderly and mentally ill, or those without the capacity to care for them themselves. Spears’s conservatorship meant that she could not make any personal or financial decisions for herself. Spears’s conservatorship was overseen by her father and court-appointed lawyers who benefited financially by allegedly exploiting the arrangement (Day and Abrams). Until 2021, Spears remained under the conservatorship, while continuing to work. These working arrangements included world tours, TV appearances and a long-running Las Vegas residency where she performed a 90-100 minute show several times per week (Jacobs). Rumours marked the beginning of Spears’s conservatorship that it was an attempt to exploit Spears financially while keeping her under parental control (Jacobs). This is evidenced by her thwarted attempt to acquire legal representation, where the court ultimately ruled that she was too unwell to retain her own counsel (Coscarelli et al.). Rumours of a broader conspiracy designed to entrap Spears in the conservatorship only gained widespread traction in 2019, resulting in the birth of the #FreeBritney movement. The growth of #FreeBritney discourse can be traced to an April 2019 episode of the podcast Britney’s Gram (Barker and Babs). Britney’s Gram was initially a ‘close reading’ of Spears’s Instagram focussed on parsing her captions, images, and emoticon use. In the podcast's special ‘emergency’ episode, episode 75, titled “#FreeBritney”, the nature of the conspiracy regarding Spears’s conservatorship took shape. The ‘emergency’ episode of the podcast responded to a tip called into the Britney’s Gram hotline. The anonymous source claims to be a paralegal who worked on legal documents related to the conservatorship throughout their employment. The paralegal claims that the conservatorship is “disturbing to say the least”. The show goes on to lay out a timeline of key events that support their assertion that Spears is being kept in the conservative against her will. Their claims are supported by a ‘close reading’ of Spears’s output, including her Instagram account and her public appearances, both official and unofficial. The hosts assemble their theory from a diverse range of sources, but their iterative theory building is underscored by the hosts’ empathetic reading, “what if it were me?” Fandom and the Collective Feelings of Conspiracy The #FreeBritney movement offers an opportunity to reflect on the parallels and intersections between fandom culture and conspiracy. It also allows us to consider what contemporary fan practices might tell us about the appeal of engaging in conspiracy. While #FreeBritney as a movement has extended far beyond the reach of the Britney Spears fandom, its roots began in the everyday fan practices that are not unique to the singer's supporters. Identifying as a ‘fan’ of a celebrity, a band, television show, film franchise, or other popular cultural texts has become a mainstream activity in recent decades, moving from a more subcultural or fringe practice (Gray et al.). Fan practices often include developing a repertoire of knowledge of their chosen fandom. This repertoire allows them to conduct close readings of these ‘texts’, which include relevant images and social media content (Hills), and look for patterns, consistencies and inconsistencies — what Jason Mittell (52) calls ‘forensic fandom’. Fans also create their own paratexts drawing on their fandom-specific knowledge to create work such as fanfiction, fan videos (fanvids), blogs, dedicated social media accounts, podcasts (such as Britney’s Gram) and other texts that fans may also analyse (Geraghty). Much like engaging in conspiracy, participating in fandom is also a broad continuum in terms of commitment, and depth of engagement. Some fans are more peripheral to the fandom, casually engaged, and only broadly aware of close reading practices that may be normalised for those within the more engaged inner circle of the fandom. However, these more casual fans may also draw on and consume paratext created by more avid fans. Creators of popular and well-made paratexts can even become renowned in social media spaces within fan communities for their creations (Hills). This mirrors conspiracy thinking, where believers range from curious about the conspiracy to committed and embedded in the conspiracy community. Like fandoms, the more active participants in the conspiracy can become established and well-known in the community for disseminating information and knowledge. For example, many followers of the QAnon conspiracy receive most of their information through secondary QAnon social media influencers who interpret ‘Qdrops’ rather than interpret the cryptic message board posts themselves (Conner and MacMurray). Scholarship examining fandom and fan experiences has emphasised the key role of pleasure for fans in developing this fan expertise (McCann and Southerton). In particular, the practices of close textual reading and familiarity with the fandom's texts, symbols, and key players offer a sense of community and collective feeling. As McCann and Southerton report in their study on queer shipping among One Direction fans (when fans invest emotional energy in the relationship, the ‘ship’, between two characters or celebrities), pleasure is collective rather than individual and emerges from a sense of belonging and shared investment. While, as we have discussed, the differing levels of involvement and investment can create hierarchy, and therefore potential conflict within fandom, scholarship on fandom has argued that fans primarily take pleasure in the feeling of community, support and belonging (McCann and Southerton; Geraghty; Pearson). Fan spaces are spaces in which collective feelings can be heightened, as participants take pleasure in experiencing something that thousands of others are feeling simultaneously — whether it be in person at a concert or, increasingly, in social media communities. The pleasures of fandom also go beyond momentous occasions like a singer's album launch or a celebrity scandal. Fans can cultivate pleasure in the mundane practices of fandom by building a sense of building and momentum, by using their close reading to predict imminent events (e.g. attempting to discern what Instagram posts might be hinting that a popstar is going to put out a new album) or undertaking rereading of old material to reinterpret meanings in new contemporary light. The pleasures of anticipation are central to these fan practices, with close reading offering endless rewards. Conspiracy theorists operate similarly, even when an anticipated event does not come to fruition. When the predictions of the mysterious Q that tell of mass arrests of prominent enemies of the movement fail to eventuate, rather than lose belief in Q’s prophetic power, the believers find explanation and new events to anticipate (Butler and Martin). Is #FreeBritney a Conspiracy? While it is tempting to situate #FreeBritney firmly within the domain of fan studies, we argue that while later borne out by facts, it can also be understood as a conspiracy theory. Conspiracy theories are united by a focus on and fear of a larger malevolent actor, who uses the power vested in institutions to control the narrative about the conspiracy, and indeed the conspiracy itself (Melley). In #FreeBritney, the stakes are a little lower, with the clearest villains being Spears’s immediate family, who appear to have financially benefited from her conservatorship. Nevertheless, the conspiracy involves elements of control, not only over Spears herself but the media, the criminal justice system, and the medical professionals diagnosing and treating Spears, as well as any close friends and staff. As with other conspiracies, power is exercised through social institutions to ‘cover up’ the conspiracy itself and any damage it is causing (Barkun; Melley). If conspiracies are secret, how then are they detected? Key to conspiracy theorising is the ‘close reading’ or ‘forensic’ examination (Mittell) of various texts to spot inconsistencies and gaps in authenticity that disrupt the dominant narrative. This is a hallmark of conspiracy theorising, which relies on “the interpretation of half-hidden cIues, tell-tale signs, and secret messages” (Melley 16). Within #FreeBritney, close reading is most obviously applied to her Instagram account and extends to various court courts, interviews, and media reporting. This analysis allows for these inconsistencies to build an alternative explanation while using a corpus of evidence available to everyone. Where Is the Pleasure? Where can we locate the sources of pleasure in #FreeBritney? To be clear, we are arguing for an understanding of pleasure that is not eroticised but rather found in the arguably mundane practises of conspiracy. The close, detailed sifting through evidence required to build a conspiracy theory is pleasurable in a number of ways. These practices are pleasurable in and of themselves — developing deep knowledge assembling the threads in the conspiracy theory holds the individual in a continual site of possibility and potential. The space of ‘what if’ where nothing is certain and outcomes can be constantly refigured allows conspiracy theorists to exist in expectation, in ‘looking forward to’ as one would a long-awaited holiday. The pleasure is in anticipating the event, but not necessarily in the resolution of the conspiracy itself. The momentum and anticipation in fan communities are remarkably similar to those of conspiracy theory communities, creating a pleasurable affective atmosphere (Anderson) that circulates in and through digital practices. The ‘close reading’ practice we describe is also pleasurable through proximity and intimacy. Close reading allows for a point of entry and connection to the broader #Free Britney community, where close readings are contributed, the readings of others are affirmed, and these individual contributions are incorporated into the fabric of the community. Close reading also provides proximity and a sense of intimate familiarity with Spears herself. Close reading is only made possible through deep knowledge, through being able to understand Spears’s self-presentation, mediated through digital platforms like Instagram, as authentic or forced. The Internet also makes close reading more accessible and immediate. Instagram posts can be saved for later perusal, comments screenshotted, and deleted comments captured before they vanish. This work of understanding, interpreting, and building happens both in real time (as soon as content is posted) and retrospectively, using what is now known or agreed upon to go back and reinterpret old material, hunting for clues and signs previously missed. This is evident in a number of TikToks where fans closely interpret Britney’s movement to confirm their theories. In one video, Spears discusses the LGBTQIA+ community. The video is not particularly coherent, and in the comments, a fan writes, “If you need help, wear yellow and blink twice”, and “If you need help do two spins” (ABC News). In her next video, Spears appears wearing a yellow top and holding flowers; she blinks twice, then does two spins for the camera. Given what we now know about Spears’s situation at the time, it seems likely she was in dialogue with her fans, counting on their close reading, attention to detail, and emotional investment. While Spears’s abusive conservatorship was obviously of concern to fans, there is also pleasure in the moments of reading, knowing, and dialoguing with Spears, creating a parasocial intimacy (ABC News). These compounding pleasures are overlapping and mutually reinforcing and create what Ahmed would call a ‘sticky’ site of affective engagement. Ahmed’s conceptualisation of ‘stickiness’ often refers to negative affects, but we argue can apply to positive or pleasurable affectivities. Conclusion #FreeBritney began as a fringe fan concern. It was mocked, derided and dismissed, before being ultimately vindicated through legal action and the removal of the conservatorship. Legal action addressing the financial exploitation of Spears is underway (Day). In a video after the end of her conservatorship, Spears speaks to her fans through an Instagram video detailing her next steps (Sky News). She also thanks the #FreeBritney movement, saying, the Free Britney Movement, you guys rock! Honestly, my voice was muted and threatened for so long, and um I wasn’t able to speak up or say anything, and um because of you guys’ awareness and kind of knowing what was going on and delivering that news to the public for so long ... because of you, I honestly think you guys saved my life. Examining the #FreeBritney movement allows us to consider the role of pleasure in conspiracy theorising. Through this reading, we can also begin to understand conspiracy theorists in a more nuanced way. Those who believe in conspiracy theories are often characterised as fearful, anxious, and paranoid. However, there are pleasurable affectivities also associated with conspiracy theorising. While conspiracy theories most often circulate through and coalesce in online spaces, #FreeBritney demonstrates that theories also drive practice with fans protesting outside of Spears’s court hearings and taking steps to dismantle the conservatorship system more generally (Rolling Stone). Focussing on pleasure can also explain the derision directed towards conspiracy theories and their subscribers. Anti-fan communities provide a language to discuss the gleeful debunking and mocking of conspiracy theories. Pleasure is also a core part of anti-fandom, that is groups mobilised around their hate of something or someone (usually a celebrity with a fan following), and this anti-fandom mirrors many core fan practices (Pinkowitz). The anti-fan is smarter and more discerning than the fan and has the ‘right’ way of thinking, reasoning, and appreciating. The rational anti-fan understands that any clue in Spears’s videos is coincidental and that fans are over-involved, overreacting and out of touch. However, the pleasure of anti-fandom, and debunking more generally, cannot exist without the fan and the conspiracy theory. Thus, the pleasure of the anti-fan only exists in dialogue with the fan, or in this case, the perceived conspiracy theorist. Attending to conspiracy theories as a site of pleasure allows us to construct a deeper and more nuanced understanding of the seemingly magnetic pull of conspiracy theories. References ABC News. “Britney Spears’s Fans Claim She Is Pleading for Help through Her Social Media Videos.” 24 July 2020. <https://www.abc.net.au/news/2020-07-24/britney-spears-fans-claim-she-is-pleading-for-help/12488754>. Ahmed, Sara. Cultural Politics of Emotion. Edinburgh UP, 2014. Anderson, Ben. “Affective Atmospheres.” Emotion, Space and Society 2.2 (2009): 77–81. 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